Memories of Alzheimer’s April 25, 2002-Goshen
Page 1 of 62
General Hospital, the patient is having forgetfulness. History of present illness- this gentleman is fifty-six years old. He came to the emergency department. He was told he was losing it by his wife. He is a bus driver. The last couple of bus trips he has gotten a complaint from his employer. He apparently has gone to Chicago and didn’t know where he was going. This is very unusual for him according to the wife. She states that he generally knows directions and has never had a problem losing his way. The wife states that this process really was began a year ago and has been progressively worse with him being forgetful and forgetting things. The patient, however, has noticed this more over the last two weeks and he does not have insight into the fact that he does not remember where to go. He says his mind just goes blank. he has complained to the nurse a little bit of a throbbing headache, but he says this is a minimal issue. Wife states one-year duration of symptoms and the patient states more like two months. His wife called their daughter and the daughter stated that he needed to get checked out today and that is why the patient came in here. Primary doctor is Dr. Egli. Laboratory results–aspirin was given seven times, urinalysis unremarkable, urine screen unremarkable, Basic metabolic profile unremarkable, liver profile unremarkable, CBC was done, and all values were unremarkable. Radiologist Studies–CT of the head was interpreted as negative by radiologist. Nothing further reported to me. Consultation - I obtained consultation with Dr. Russell the neurologist at Elkhart by the patient and patient's wife's request. Dr. Russell took the patients’ name. He agreed with my treatment plan. Frontal Temporal Dementia is an umbrella term for a group of uncommon brain disorders that primarily affect the frontal and temporal lobes of the brain. These areas of the brain are generally associated with personality behavior, and language. In the frontotemporal dementia portions of these lobes shrink (atrophy). It is sometimes called Pick’s disease or frontal lobe dementia. The frontal lobes of the brain found behind the forehead deal with behavior, problem solving, planning and the control of emotions. Frontotemporal Dementia occurs when nerve cells begin to die in the front and/or temporal lobe of the brain. They have found in studies Alzheimer’s is very rare in states below the Georgia line. It is also more prevalent in the northern states stretching from New England to the state of Washington
Page 2 of 62
The study points to the seriousness of a lack of Vitamin D. There is very little sunshine in Seattle, and Alzheimer’s is very prevalent there. According to her Vitamin D is important because it definitely helps in not developing Alzheimer’s. This is really good to know if you live in any of those particular areas. Ira was driving bus for Cardinal out of Middlebury, and was on a trip to Chicago, and was asking the tour director for directions instead of knowing himself where to go. Before this there was one other time this had happened to him. So, they called me from the company, concerned that something was wrong because he was always so good with directions, and this was highly unusual. I immediately called my daughter, a physical Therapist, and she thought we should rush him to the hospital, so after many tests, and many hours in the Emergency Room, they suggested a Doctor in Elkhart, IN Many questions were asked to check his memory, and it was decided to put him on Aricept and see if it improved. I prayed it would not improve, because I did not want it to be Alzheimer’s. To my dismay he improved, because he was 56 years old, we decided to get another opinion, and Dr. Fargo was recommended at IU Med Center in Indianapolis, IN. During a 3-hour testing procedure, he sat us down and announced that he sees no other option but Alzheimer’s! Startled and confused we headed home, and my man said he would rather die than lose his mind. Get a gun when we get home and get it over with! I couldn’t do that, but we were both devastated. “I want to go to heaven”, he said that very frequently. We decided to go to Mayo Clinic, for 12 days of test. Then we took a Christmas break because the Alzheimer Specialist was gone for the holiday I felt I needed to get to work and try to earn some money instead of just spending. Ira’s sister Martha went back with him to the Mayo Clinic on January 22,2003. When I got the news from Mayo Clinic, I was at work, Ira and Martha were sitting across from the doctor when they called me. The report said it is definitely Alzheimer’s. The doctors report said “We had the opportunity recently to see Ira Miller. Our final diagnosis was Alzheimer’s Disease, indeterminate episodes of dizziness and in balance, bilateral sensorineural hearing loss, exertion dyspnea and chest discomfort. Obstructive voiding systems, benign prostate hypertrophy and hyperlipidemia”. My heart just broke upon hearing the news. I cried for a while, then I had to get it together for my customers. I called mom, Yolanda, friends, our pastor and told Dallas Martin. Ira called about 10:30 pm that evening from a motel, and I asked how he was doing. He sounded softened and not very happy. I told him I was sorry we didn’t get the answer we wanted, and he said what are you talking about. I said the doctor saying it’s Alzheimer’s. “He said, he didn’t say that he didn’t hear that! I heard what he said he told me, and the guy is just a goof ball, Page 3 of 62
I’m no different than I was 10 years ago. I had trouble remembering things when I was 10 years old and it’s no different now”. Martha and Ira talked about the report, he said “ forgetfulness runs in the family, but I’ll be the same 10 years from now as I am now, and I don’t want you telling people any different”! He’s still convinced he’s 100% right and the doctors are just crazy, and they don’t know what they’re talking about. We might have known this was coming, there were Incidents that indicated Ira had Alzheimer’s. There were many subtle indications to be recognized. •
• •
• • • • •
• • • •
• •
One day I asked him to take my coat to the cleaners and laid it by his shoes so he wouldn’t forget it, but he didn’t pick it up and when I ask him why, he said his head is roaring and he doesn’t think right. He bought a gallon of milk for me, and left it in the truck over-night, he forgot to bring it in. Ira is having a terrible time with directions today, I had to read the maps, but he kept saying they didn’t have enough info. So finally, he listened to me and we got to where we were going. Ira continues to ask me what day it is, sometimes four times a day. Repairmen were putting in a new kitchen floor at home, he took a nap, and when he woke up, he couldn’t figure out why all the stuff was in the living room and he was upset. I got in his truck and found a letter I had ask him to put in the mailbox 2 days ago laying on his seat. He’s being very stubborn and mean to me, he came home from the coffee shop, Sunday morning, 15 minutes before it was time to go to church, then he decided to go by himself. He doesn’t flush the toilet, doesn’t turn off the shower head, he doesn’t put things in the hamper, and he closes dresser drawers halfway. He can’t find a phone book, and he very seldom opens mail after he gets it in. He repeats the same thing 3 times in about 2 minutes He woke up in the night, and fell out of bed, couldn’t stand up; and he crawled to the bathroom and vomited. He felt like his head was going to burst in church because the sermon was too loud. We had a big blow-up, he said “bullshit” I want all the control on the checkbook. I tried not to respond and in about 15 minutes he threw the checkbook at me and said, “it’s all yours”! I cried to my Mom and Gladys. That same day a good friend stopped at the dealership where I worked, and I lost it again. Ira went through the EZ-Pass lane on the Turnpike and then tried to back up to get a ticket. At the Airport parking lot, he lost the ticket. My neighbors Butch & Dorothy told me they were at the Westside Restaurant in Topeka and he was confused and wondered if someone could tell him where Topeka was! Page 4 of 62
• • •
• • •
• • •
• •
•
•
He lost his shaver somewhere we had to buy a new one He said I had to wait 12 hours before I could have a tooth filled after eating breakfast. We went on a trip to Florida. We visited with Wade Barwick, Edgar Petershein, Tobias Yoder and Ira’s brother Edgar. They all seemed to say, “just put up 100 houses, borrow the money and pay interest, and somehow it will all grow, and we would have millions like these 4 men have’”. God help me I would love to see him take ahold of business opportunities and manage them and make some good purchases and see them grow. But with his Alzheimer’s it is not possible to make good financial decisions. God help me I don’t want to discourage him, so I said nothing. I’m scared of what he might do! We went to Shipshewana with Larry Gingrich to talk to a nutritionist, he told him the top of his head felt fuzzy and losing energy. He was having bad diarrhea and vomiting several times a month. He forgot to take his pills before going to the Airport. He made a mistake and put a Swiss army knife in a suitcase, that caused problems with tickets. We couldn’t find the United Limo Bus to go home even though he drove for them for years. We were at a motel trying to rest up and he kicked at me several times during the night. I couldn’t sleep so I finally got up at 7 am. I’m feeling frustrated, I found out he borrowed $2,400 to pay bills and was making payments of $100 a month. He forgot about it and it was two weeks overdue. He borrowed money for land on highway #20, it cost $65,000 and with the interest it would bring it up to $76,000. We got it down to $74,200. I am just not capable of working 12-14 hr. days forever to try to pay for his bad financial choices. God please help me at work today so I can make a lot of car sales. I seem to see work everywhere; I think I need to go do something wild and crazy and go on a fishing trip. I asked Ira to rub the small of my back, as I laid on the floor, he rubbed it a little and then said, “what are you making me do this for”? I said nothing, he asked again, I just about cried, he had no memory of me hurting my back Sunday skiing and no concern whatsoever. It’s times like this that I don’t know how I’m capable of dealing with this with kindness and understanding. At one point, I got his Social Security print out. He made $14,900 that year; no wonder he feels he doesn’t have enough money to buy his own underwear. The year before that $26,000, and year before that he made $5,943. God gives me 24 hours a day, am I making them count for him? That’s my daily goal. I don’t know, what people say about Carol Miller? She smiles a lot and sells lots of cars? Whoopee, I can do so much more spiritually and financially I know! But to step out in a new area and depend on my husband scares me to death.
Page 5 of 62
•
•
•
• •
• •
•
•
•
I had only one Saturday off a month. One Saturday we went to Lagrange for breakfast, we tried to stop at the apartments to get some rent that was due and he grabbed the steering wheel of my Mustang and said I cannot drive in there, he looked at me with hate in his eyes. I got a phone call from a renter and had to turn around and meet her at the bank to get rent and then stopped at the apartments to trim bushes and spray weeds. I ended up talking to two of the renters about God. God blesses me in so many ways. I only have 3 cars sold and it’s about the end of the month, help me Jesus today to be productive in selling and being a blessing for you. I had a day off and took Mom out for lunch. I came home after picking up the trimmer Ira kept forgetting. I rented an apartment and met with the realtor about the land on Highway # 20. Then I picked up his prescription for Aricept and found out it was $ 125 after insurance. That cost was every month. God help us! Ira had a rough night, gasping for breath a lot, it’s been 37 years today that we were married. What a day at Eby Ford, three service customers complaining, and a customer I worked with almost all-day Saturday decided against buying a truck. He bargained me from $12,100 to $8,200 and walked out and laughed. He said he would call later ,but no call! Even the jeep I sold Saturday came back, the customer couldn’t get it financed. Today I was told I owe $14,000 for road work on the highway # 20 land that my husband has already borrowed $65,000 on . Went to David Roger’s Day, a community park with log homes in Wolcottville and I waited and listened to his repetitive stories to a neighbor. I moved around from log home to log home trying to wait on him. About 20 minutes later I came back he was still talking to the same people, so I went and listened to the music for another 20-30 minutes. Ira was still standing in the same spot talking to the same guy! A sleepless night, I finally got up at 4:30 am and had a cup of tea and devotions. I checked out the bill file, God help me, he had borrowed another $1,700 against our home. Now the debt is over $3,900 and I didn’t even know he did it. I got another doctor bill from Dr. Russell for $198 and still have one coming from Elkhart Hospital of $1,198. What am I to do? All I’ve ever done since being at Eby Ford is worked to pay bills either he made or college and weddings and farm debts, God I need your help here. My restless husband was up and down a lot last night, for 3 or 4 hours. He finally took a bunch of aspirin and he felt better. I asked him a lot of questions, but he’s not good at describing what he’s feeling. He often got upset with me because I didn’t say what he wanted to hear or if I disagreed.
Page 6 of 62
•
•
•
• •
•
•
•
•
A day after his 57th birthday he had a stomachache during the night and a throbbing head. He didn’t sleep well. He sat by the side of the bathtub and cried because he felt so badly about me telling people, he needs to get a job! And he said there’s nothing he’d rather do than get a job but, his head just doesn’t work right, and he can’t make sense of things, and we both cried. Today I spent 2 1⁄2 hours with his nephew, who advised us to Auction the ground off on route # 20, as soon as possible. He said we’ve got way too much money in it. You’ll make no money putting houses on it. We should stay focused on the rental business that we know, don’t let one bad debt, run yourself to more bad debt. Great advice! Went to nutrition center in Shipshewana, and they advised him to take on a new project. Instead of trucking, take on a hobby, spend time doing things he enjoys. Let that hobby be taking care of yourself, take vitamins, and exercise. You’re in a hole and need to take one step at a time to get out of it. Find a job that you like and makes you feel important and build up your self-worth. Do service type work to help others. Went to see an Elder lawyer, Paula Coody, we got lots of advice, and I started getting things in place. My husband just got all roused that we haven’t bought more apartments all these years and it’s my fault because I always held him back from reaching his dreams. This is one of those times that I need to remember it’s the disease, not my husband talking, because that could really hurt bad. I’ve always felt he always pursued his different dreams especially jobs and business and I stood back on the land on “20”. He said if it weren’t for me, we would own 30 to 50 apartments and have them paid for. God Help Him! Ira was up reading when I got up and he said he felt his brain move in circles, it was moving around. He felt because he was reading, it was working his brain and was repairing itself because he was working it. Ira was very irate. We went to see Willie Christener at Northern Nutrition in Shipshewana. They discussed the disability we signed up for on Dec.5 2002. They decided it will keep him from getting a job or doing anything for income. He should go make more investments, like putting up houses on his land. The best thing we’ve got going is that land, all the interest and losses are deductible. Totally different from what his nephew said. All millionaires don’t pay much in taxes. He also found out I lowered his maximum credit card account to $500 when he went to get his medicine. He was furious with me again. I’ve been reading a book, “How to stop worrying and start living.”, I just finished Chapter 15 about counting your blessings. I came up with 36 really quick. We think we are separate from everyone else and God, our problem is we think we are separate from our source, which is God! The ability to face your life’s problems, go away, when you bring Gods light to a dark area of your life you are being spiritual. It’s an 800-yr. old theology-“Make me an instrument of thy peace”! How? Page 7 of 62
•
•
•
•
•
•
Talk softly, show kindness, find 5 ways a day to bring peace to them. Where there is hatred, let there be LOVE. (I’ve been putting my attention on things I shouldn’t) when there’s a disagreement, we respond with the same energy of peace not hatred. In the final analysis, it’s all between you and God, not you and them anyway. You give without expecting anything back! Where there is despair, let me send joy! Where there is darkness BE LIGHT! Row, Row, Row your boat- gently down the stream (No one else’s boat) Merrily, merrily, merrily life is but a dream. About 2 am, he had his hand and arm across me and squeezing my breast, I was lying on my side. He started talking and grabbed a tight squeeze on my breast. I pulled his arm away. He then said- “You bastard’s don’t put poisons in my bulk tank.” We were dairy farmers for about 20 years. He was dreaming, and pushed on it really hard, like a mad man, and I screamed. It hurt so bad I was in tears. About 2 minutes later he said, “is your lip bleeding where I hit you, I’m sorry. “I said it wasn’t my lip it was my breast, then he really felt bad. He asked about it a couple of times throughout the night, and again in the morning. He seemed to remember after the fact. Had a wonderful day spent time with some of my friends. I went to the bank and started a 2% decrease in the loan on the 7-mile addition. Put $300 down, it will take the loan payment from $589 a month to $552. I also have a $100 monthly payment on his $4,000 loan. When I got home and looked at the mail and we had 2 late notices of $25 from the bank, one for a bounced check to our missionary friends for $200 and a late fee of $28 for the payment on the land that was due March 1. Ira had told me he had paid it ahead to April 1, so I didn’t pay it. , Now I need to have $1,000 tomorrow in the bank. Where’s that going to come from? God help me-then the worst part was my husband threw the checkbook at me and said when “He” was in charge of everything he never had checks bounce and always had plenty of money in the account. He said It was all my fault the bills aren’t paid. I just walked out. It’s 11:30 pm and I couldn’t sleep for the last 1⁄2 hour. I’ve tried to get him to at least roll over on top of me for a little, even if he didn’t seem interested in making love, I kept encouraging him but only a weak hug. I started crying and the more I cried, he said he didn’t want me to cry. So again, I asked him to just lay on top of me and he wouldn’t. Pretty soon I started thinking, is this the way it’s always going to be? No interest, no concern for me. I’ve had a rough day, a new car manager with only two weeks on the job, told me I was saying two different things about attending a meeting. He said I couldn’t be trusted to tell the truth and I wasn’t a team player. All salespeople should be treated the same, attend all meetings and do all the walk-around competitions, and be to work at the same time as everyone else. I explained I’ve attended meetings for 8 1⁄2 years every day. Let them all do the same and
Page 8 of 62
then point fingers at me. He said he is here for the long term and Todd (owner) will back him up on anything he says or does. The department is his to run and I need to be a team player or get out. I said to myself, well, it sounds like I better talk to Todd and then get out of here. Maybe that’s what’s bothering me, or is it the slow progressing fact, that I’m losing my husband. •
• •
•
•
•
What a day! We started out about 9 AM and stopped at an apartment to speak to our renter Walter. He did a lot of repairs for us. I asked him if he would be able to help us today, we need to replace a doorframe in Goshen. He wasn’t available. Ira asked me if I had my toolbox and I said no, but yours is in the truck, so we'll be okay. We went to Priest lumber in Topeka, and also a salvage store but no door jams were available. So we went to Menards and found a door jam, Ira measured the door and said it was 34 inches or 36 inch, we bought the doorjamb and took it to the house and it was too big, the door was only 32 inches. So, we went back to Menard's and they only had one door jamb that size with a door. The price went from $20 dollars to $279. Ira and I went back to the house and when he opened the toolbox, no hammer, no power drill which was what we needed. We drove all the way back home 25 miles, got more tools and went back to Menards again to get a doorknob. Then we went back to the house in Goshen again and tried to put it in place. We couldn't get it tight. Finally, we decided we needed nails to put the framework on the door, so back to Menard's, where we bought finishing nails, then back to the house, by now it's 7 PM. When he put in the nails’ they were too short, it hit nothing, so I said I quit! We pulled the door out of the framework and we pushed the old one back in place and left! Accomplished nothing! God help me! Last Thursday, he asked me four times in about an hour if it was Thursday. I asked Ira to pay the remainder of the repair bill for the Mustang he backed into last summer. The remainder of the bill was for $450. I had an appointment for repairs. However, he would not stop shooting his mouth off saying that he had $500 and he was going use it to have the tree stumps removed not fix the car. No common sense. At one point he was mad about me going to a baby shower at his sister Martha's house. The men were invited too. He wouldn't go in he just sat in the truck. When we left, he couldn’t find our Hickory House rental that was close to his sister Martha's only about two blocks away. Enough! He couldn’t write checks, and he put deposit amounts in wrong place. I asked him to sign his name, he looked at me straight in the face and said what is my name? I was so startled I said nothing, and he finally wrote Ira, looked at me again and I couldn’t say anything and then he wrote Miller. I was sick with the flu about 5-7 days and asked him to get a refill on my medicine. I actually put a sticky note on the old container and wrote a note to the pharmacy. I wasn’t feeling good enough to cook, so I asked him to get a couple of cans of tomato soup and diet 7up.
• Page 9 of 62
• •
He asked 3 times before he left what the empty medicine bottle was for and when he got home, he had a quart of tomato juice, a Liter of 7up and no medicine. He doesn’t hear well anymore. In church today, he asked me 6 times what someone said, and at the restaurant the other night he could not hear any of my conversation, unless I leaned way over and talked directly into his right ear.
An interesting thought: Almost all pharmacies are famous for being at the very back of the store. A person could have a heart attack going to get medications and then walking all the way out of the store. o I spoke to my neighbor Marilyn Faulkner who is an RN looking for some advice. Ira started going to bed at 3:30 PM yesterday, but finally got up and down a couple of times before bedtime. At midnight, I woke up and he was standing beside the bed with nothing on but his Tshirt. So, I got up and put a diaper on him, his old one was lying beside the bed all torn up. Then I got into bed and it was all wet all the way through to the mattress pad, which was waterproof, thank God! I stripped the bed, and put on clean sheets, put pajamas on him and put him back to bed. Then I went in the bathroom and the carpet on the floor was all wet, and about 50 little pieces of torn diaper was all over. I cleaned it up and went to do a load of laundry. In the hamper was a whole bunch more of torn pieces of diaper just soaking wet. Needless to say, it was cleanup time. I asked Marilyn, “what do you think is causing this behavior? o I went to Dr. Egli late and went over his meds and discontinued the one he had given him for nausea, over Christmas time, but it's also for epilepsy, I think. Could that be causing all this behavior? At day-care today they said he wasn't himself. He didn't want to eat, which is very unusual. And they tried to help him with his diaper for the first time, and he got mean. All during the day he didn't say anything, except asking about Larry, his new friend in the mirror. This evening he didn't even talk. o Marilyn replied regarding his behavior: “My guess is that he might have a urinary tract infection. We see increased strange behaviors in a lot of people in the nursing home and once the doctor gets them on antibiotics, we usually see a remarkable improvement. He might be tired from the infection and urinating a lot. He might feel that he has to go all of the time and he’s preoccupied with that. If that is not it, I don't know what to tell you. You may be getting close to a time for respite stay for him somewhere. I would suggest the place where he goes to daycare. They would know him a little. You can do respite care up to 30 overnights at a time, but it requires full blown nursing home admission so you would need to talk to your day-care place and have them start pre-admission screening. o
Page 10 of 62
o
If you really need a break, they can do an emergency admission and have him 24 to 48 hours after starting the process. Then at the end of whatever timeframe you request on the screening papers you would need to bring him back or do different paperwork to have him stay. Sounds to me like you could use a break. Usually with respite you're charged the regular room rate for whatever days you request to have him in the facility.
o Have you prepared financially so he could apply for Medicaid? If not, I can explain that to you. Basically, the two of you cannot own anything together. All of his assets would have to be spent down to where he only has $1,500 or less before he could qualify for Medicaid. Your house and car would be exempt and anything that you owned by yourself (not true). Hopefully you have gotten his name off of stuff because Medicaid people look back five years to see if you have changed anything to preserve assets. Let me know if I can help in anyway, we could start the pre-admission paperwork for you if you want. Once started it is good for any nursing home in the state. If he wants to go to Miller’s Merry Manor, we are full right now, so I'm not able to admit him there. o Maybe you could get him to drink cranberry juice. That is supposed to be good for the bladder in case he doesn't have an infection. If you do hospice you would get some relief during the day. I think they can assign a nurse aide to 20 hours a week. Could you afford to hire some private help to stay at your house with him after the hospice hours so you could get longer time away from him for a while? I will keep thinking of things that might help. I don't know how much you pay for daycare, but I believe the going rate for private aid is $15 an hour. That might be less expensive as you would have to drive into Goshen, gas is gone up to $3.99�. March 2012 Zoning Meeting The battle of repossessed house in Wolcottville. I purchased a house in Wolcottville that needed approximately $100,000 in repairs and remodeling to get it ready for a rental property with two units. I completed the renovations and that resulted in two living units, one upstairs and one downstairs. I spent approximately 11 months repairing the house. My renovations were completed in February 2012. The following is the commentary I made at the zoning board meeting to justify the renovations I made to the location. What can I say? What can I do to resolve this misunderstanding on this property that I remodeled in Wolcottville? I trust in who I am, and whose I am. The I AM and I stand before you tonight trusting your decision and respect your position of authority over the remainder of my retirement years and financial position. Now I know I made a big mistake by not coming to the county first, but I didn’t know the Board of Zoning Appeal existed.
Page 11 of 62
Let me start at the beginning, I had been thinking of pulling my retirement account out of my IRA and using what little I had in a better way. My husband and I have been in the rental business in small way ever since we married 46 years ago. I started watching for repo houses. With the economy the way it is, I saw this house on the Internet on a Tuesday afternoon, I looked at it on Wednesday, and made the purchase. When I walked through the house, I had a vision of a double rental property the layout for two families was perfect, and that’s what it is today. There is plenty a room for two families to enjoy within 2050 square-feet on the upper level and the same on the lower level. I have been able to provide a home for two families who perhaps could not afford to buy, or they have circumstances that caused them to lose their home in the past. But they may still need a large home that was almost new and close to the lakes and beaches. I enjoyed the work and challenges of about 800 hours of work myself over 10 months and I made a lot of choices to make this home functional and beautiful. I was able to work on this house and still care for my husband, he was by my side the whole time, even though 10 years ago he was diagnosed with Alzheimer’s.
I can’t leave him alone, so this was something he could help me with, and it is only 4 miles from our home on Dallas Lake. The timing was perfect for the work project because since the first of the year the Alzheimer’s has been causing him to decline very quickly. We finished up about the middle of February, so my time is available for caring for him now. My apologies to the zoning board for not contacting them, but I didn’t realize they existed and all the past years I had not encountered any zoning issue. Perhaps my husband did. But he could not communicate with me on anything, so I just operate with my own knowledge. I did not knowingly defy laws or authority over me this. This is my first time taking on such a big project and I meant no wrongdoing, in fact quite the opposite. I was trying to do good by improving a very neglected house and making it fresh and clean and very livable for families again. I truly believe in making good use of every square foot in a property and I did. I understand there’s a law about making use of every available space. I now know you, are a board of law and zoning and I respect the fact that it will not happen again. That I am sure of. My understanding of the law is that it revolves and changes depending on the situation, this is an unusual situation. I need you to consider that I have been a taxpayer in the Lagrange County for over 30 years. I did not know there was a zoning board that affects what I was doing “inside” the house. I understand, second hand, our neighbor called in and made a statement that from a five minute conversation with me I said I knew about the zoning board and I said the heck with it I’m going to do it anyway. That is not true! I didn’t understand and my actions speak louder than words of the past 10 months to prove it. My understanding was that although it was zoned for a one family dwelling, this was not a serious issue on the same level as a law.
Page 12 of 62
Obviously, I was ignorant of the matter and did not research as I should have. I truly thought if someone complained it would be worked out between neighbors. In over 46 years of owning rentals I have only had a positive relationship with neighbors who felt that I was a conscientious landlord. If I would have had full knowledge that this could happen, I would have been up to that Lagrange Zoning Office to make sure before I spent the first hour. I believe from information I received that there are many people living in a house that is zoned for only one family. I plead for you to except a variance so the two families can enjoy this quality spacious home. Thus, I can afford to care for my family without relying on the county state or national government. I have been told that the families that first built the house lived in the lower level for years, then in 1973 they built the upper level. I really haven’t changed anything but improved it up to 2012 standards . Also, at one time it was a business property, they made cement vaults there, and also an evacuation business worked out of this property, so it was probably zoned commercial at one time. I plead for mercy to allow my dreams to be reality. I have made Lagrange County better for two families living here and we will continue to bring income to local businesses I plead for mercy to allow my dreams to be a reality As you make your decision please look into your own hearts and lives and don’t throw any stones at me. Thank you for your time and attention Carol Miller. The meeting ended with responses from the audience. A neighbor who lived across the road from the house stood up and said, “ we don’t want rental properties across the road from our home”. After her comment, the variance was turned down. A letter from friends who also owned multiple rental properties. Carolyn and Lowell Hostetler wrote me about the repo House. We are so sorry this has happened. We don't understand how anyone can do this to someone. I have been praying and asking God how I should pray, He gave me these verses to pray. I know that the God we serve is greater than the one that is in the world. I am praying these verses for you and praying that our Lord Jesus has mercy and will change that ladies heart”. II Samuel 22:1-3,” And David spoke unto the Lord the words of the song in the day the Lord had delivered him out of the hand of all his enemies, out of the hand of Saul, and he said, the Lord is my rock, and my fortress, and my deliverer, and in him will I trust. He is my shield, and the horn of my salvation, my Hightower, and my refuge, my Savior, that saves me from violence”. “Remember when you were in Israel and If you remember when you entered those old towns, they had towers. When the people knew they were under siege they would run to the towers and run into them for safety so no one could get to them. You are now running to your strong tower our Lord Jesus Christ. This lady cannot harm you and I believe God will be your rock, your shelter, your deliverer, your Shield. He is your Hightower. We are praying for this and over you. Love you Carolyn”.
Page 13 of 62
An e mail from Lee –“Just some words to meditate on and pray over today. I was reading 1Corinthians this morning and came across these two passages. I know there are some among you who are so full of themselves and they never listen to anyone, God’s way is not a matter of mere talk, it's an empowered life. I'll tell you what I would do. Bring it out in the open and deal with it in the authority of Jesus our master. And our master Jesus will be present in power. These are from the Message translation. Even if you feel you might experience defeat in this one battle, God has not resigned. Battles are often lost even though in the end; the war will be won. He may have some other plan our finite minds could not even think of that will be bigger and better than what you now have in mind for the property. He always does things we could never think of and leads us in a path we would never consider. Let them lead, Carol, don't bite the Pastor the Shepherd has chosen. Right now, he's leading you through curves and stagnant water but there will be greener pastures and sparkling streams at the end. He sees the big picture but, we can only see the muddy path and lurking dangerous on this particular leg of the journey! He desires our faith and our trust more than anything else we can give him. Praying, my friend”. The Alzheimer’s Email from Marilyn Faulkner. “The criteria changed since I was in home health. He basically just has to have a diagnosis that is terminal, and he does. Any prognosis life expectancy of six months or less. Don't freak! We had hospice patients that were on hospice for years as long as the physician would keep certifying down the six- month prognosis didn't matter. Once this is done, I believe he meets the Medicare criteria. Basically, you just call the hospice company of your choice.
The aid would be to help dress etc. A nurse might come too. They used to offer a chaplain but I think they have stopped that because so many people have their own religious support people. When you sign up for this you are agreed that you do not want to be aggressive with any treatment, do not want him to go to the hospital for anything related to this terminal diagnosis. Whatever the hospice company does for him in regard to his diagnosis they have to pay for. They bill Medicare. That means they pay for his visit, his medications that are for the dementia, his diapers, antibiotics if they decide incontinence is a result of the dementia and the incontinence is the cause of the infection. I do not believe he has to be homebound. The goal of the company is just to help his life be as fulfilling and normal as possible. If you are not able to keep up with the demands of his caregiving for all the hours of the day that hospice is not in the home, then they might suggest a nursing home. They don't like to do that because if he’s admitted then they are usually done. I think it would be a great thing for you and Ira. There are hospice companies in La Grange, Goshen, Elkhart, etc. Page 14 of 62
Tuesday the 20th is the next meeting of the Alzheimer's support group. I went last month as a sponsor. It seemed helpful for those attending. I think this month they are going to talk about bathing and dressing the person who is confused, maybe he doesn't know you or maybe he is resistant to your help. It is at the Council on aging building from 6 PM till 7 PM. Our unit is full right now but LIFECARE has a nice unit. The admission director at LIFECARE is the leader of the support group in Lagrange. Let me know if you would like me to go with you to the meeting. I went to the doctor with Ira today, he gave him some antibiotics. About an hour ago I saw white stuff laying all around, and sure enough he has pulled all the stuffing out of his diaper. He still had the diaper covering on. I complained and he plainly said he didn't do it! Right! Never to ask any questions. When one has dementia, he doesn’t want to hear questions. Questions can be somewhat intimidating. They need to hear complements about their actions. He vomited four times after breakfast. Finally, when he finished and looked normal, I gave him yogurt and seven up. Lesson learned. I just can’t let my guard down. Sometimes things seem to go ok for a few days, then, POW. I need to be wary of these events all the time. Our doctor advised me to get Ira signed up for hospice. They told me when I need to rest, or just need a break from him following me every step I take inside the house and of course everywhere I go that they could help me. I got him a sedative for nighttime so he can sleep and me too. For two weeks he woke up at least 3 to 4 times a night, and somehow, he wet through and around his diaper. Usually he gets the T-shirt wet too and pajama bottoms. I ordered from “Buck and Buck” a full pajama coverall that has a zipper in the back, so he won't be able to go to the bathroom without me. It restricts him so he can’t move around so that he sprays outside the diaper. He often pees on the bathroom floor before he gets to the toilet. Pray for me to have wisdom. I heard from Yolanda and she said “I would question hospice, because that is truly end-of-life care. Which would mean he is actively dying. He would likely be more appropriate for a long-term placement in a memory unit. I would certainly consider a memory unit. It does not sound like he is appropriate for travel or can be placed in an unfamiliar or changing environment. I seriously think it would be a huge mistake to bring him with you to my place. It would not be fair to him, you, or the kids to see that regression here. You cannot be a good caregiver or grandmother if you are exhausted trying to keep up with him”. I sent a long-winded email to my friends. “I woke up at 2:30 AM and changed his diaper, no wet sheets. Back to sleep till 8 AM then started moving his hands on his diaper, I could hear the shuffling. His pajamas were wet and so were his T-shirt, the sheet and the pad under the sheet. He had a mad face at breakfast.
Page 15 of 62
I needed to shower and of course he follows, right on my back everywhere. Couldn't get him out of the bathroom so I couldn't lock the door. I started a bath and he started taking off his clothes, I said, no, so I jumped in the tub, thinking he would understand, but he put his foot on the edge of the tub and tried to quickly wash himself. I washed my hair under the faucet and by the time I finished rinsing my hair he took his T- shirt off and sat down in the tub. Since I gave him a bath at 8 PM the night before, I dressed and thought I would see what he’d do by himself. He came out with only his slacks on and no diaper. So, I tried to motion we need to take his pants off. He pushed me. Wasn't about to do it. Finally sat down and I pulled his pants down and off but he wouldn’t lift his feet. Finally, I got them up, and the diapers back on and after many tries got the rest of his clothes on. He continued with a mean look on his face. It’s just a bad day. Ira is just not with it. He seems to be in a daze. He is constantly saying to me ‘I don’t feel good” I said, “where”? He said, as he held his head in his hands, “In my brain”. I almost broke into tears. But then after sitting on the recliner a while, at about 10:30 AM he started smiling and playing with the cat and watching the birds At 12:15, as I prepared a quick lunch, I went into the bathroom and most of the carpet by the toilet was wet. What is going on? He dumped the extra turkey noodles in the waste basket, followed me to the bedroom and acted like he wanted to be changed. I changed him then let him finish putting his pants on. I did only one leg, he came out with only one shoe on. About 1 o'clock we went to Topeka for a few groceries. He shivered uncontrollably in the car, I put the heat on to calm him down. Late in the afternoon he kept pointing to the neighbor. He was burning something in his fire pit, so I got Ira to put his shoes on and we walked over to talk to our neighbor for a little while. He was a retired policeman from Chicago. When we came back in the garage, our shoes were covered with grass, so I asked him to take his shoes off. He pushed me and pinched my arm hard. So, I just sat on the step with him several minutes. Finally, he took the shoes off. I had spent most of the day cleaning house. He started to get a mean look on his face while we were talking to the neighbor, so we didn't talk very long. Later about 6 PM he kept grabbing me and pointing to another neighbor’s house. The red truck was there, and they are not home very much. After shoving me hard a couple of times, I had to put his coat and shoes on and got in the car and drove over to their house. I explained what was going on, but Ira would not get out of the car. He shoved me again. We stopped at their driveway, and he hit the door of our car hard on his side. They were very kind to him. They got him out to look at their John Deere lawnmower, and he calmed down, but wasn't happy. Later he sat in his recliner for a long time with his coat and hat and shoes on. Finally, at 8 PM I gave him a bath he was not as cooperative as normal, but I got it done. That's my story and I'm sticking to it. I'm not telling you this, so you’ll feel sorry for me. The opposite, you are the ones who asked how he's doing, and this is how it is.
Page 16 of 62
As I wrote earlier, we were turned down for hospice because he is too mobile, and he moves too well by himself. Dr.Egli talked them into at least 30 days to see how it goes and they would give me advice, so I'm in good hands, especially with the Lord. Tomorrow a healthcare nurse is coming to examine him. Tried to put his glasses on him, he rubbed them in my face. Went to bed with his shoes and glasses on, just before bed he wanted to go outside with his pajamas on. He vomited a mouthful after breakfast but got over it, I took him to day care and on the way stopped at McDonald's and he smiled. At daycare they said he was mean and vomited his lunch. Later a social worker came to visit, and he wouldn't sit down. He just wandered around in the bedroom and bathroom. Seems he mainly was looking in the mirror at Larry. He talked to Larry for some time, but he didn’t make any sense at all. Sometimes I just leave and go find something to do, so I can be ok with my own senses. I worry about my own mind at times. Woke up at 2:30 AM changed his diaper, he was restless and jerky. He woke up at 8 AM seemed happy. We looked at two nursing homes and tried to get a golf cart again. While I was on the computer, he ripped his diaper off and spread it in 50 pieces all over the bathroom. I changed him and he finally relaxed in the recliner. The rest of the time we were home he just walked from the bathroom to the bedroom like four hours, talking to Larry in the mirror. He started riding the mower and he mowed for an hour or so. He then left the mower running and walked through the house dropping grass everywhere and ended up sitting on the toilet with his pants on. About 1:30 PM I found his morning meds in the waste basket in the bathroom. Slept through the night with no diaper change. Smiling all morning. Spent most of the morning in and out of the bathroom, sitting on the toilet with his pants on sometimes off. Sometimes he was standing up sometimes lights on and sometimes lights off. After 1:30 I ran several errands, I took a neighbor man to pick up his repaired car and got some groceries. We went to Dr. Egli to test for urine infection, it was very slight, so we picked up the medicine and got home about four or five. I checked his pants for a diaper on, found them behind the hamper so I tried to get him to use the toilet and after a couple of times he sat on the toilet but wouldn't pull his pants down. I finally got him to unbutton and pull his pants down, but he wouldn’t lift his feet. Finally. He was just being very mean to me. He continued to walk in and out of the bathroom. Six different times during the day he grabbed my arm and pushed me in the bathroom and sat on the toilet and pulled and ripped his diaper apart again. I tried, but not able to show or explain that we have to have underpants on.
Page 17 of 62
He’s too strong for me, so I stepped out of the bathroom and just cried. I was thinking about having a nervous breakdown, but then maybe just acquiring some kind of complex. This at least seemed better for those who have to associate with me. I made a turkey sandwich for dinner and he tore it apart, after he grabbed it out of my hand. I wasn't quite done making it and he threw it across the table. I put it back on his plate again, and he did eat it, but I didn't watch. It seems the less eye contact the better. I found the sandwich laying on the counter. I gave it to him again and he looked at me and smiled and just threw it in the sink, so I put it away. After Wheel of Fortune I started his bathwater and he stepped in with his T-shirt on, I let him go, then he started struggling as I tried to wash him. He pushed me again. I stepped back and tried later, and he smiled and let me finish. At 8:15 PM I gave him a sleeping pill and his antibiotic; he bit the pill in half and threw the rest across the kitchen. I was getting water, so I gave him a glass of water and he threw the water at me. I quickly wiped it up, wiped myself off and set a glass on the counter. He picked it up and drank it. I made him some cinnamon toast and gave it to him; he ate it and drank some more water. He then calmed down and I didn't look him in the face. He sat in his recliner and finished watching the Waltons. Day care called and said he was mean to people and I should come pick him up right away. Another blow. The rest of the day till about 5 through 7 he was in the bathroom with his pajamas on but smiling. Slept till 4:30 AM, needed a total bed change as well as his wardrobe. I prepared eggs and hash browns and yogurt crushed with his pills. In the afternoon again he stayed in the bathroom, I gave him drinks and snacks while he was sitting on the toilet. He tore diapers apart, while I was trying to put them on. He was just mad. He woke up happy, I crushed pills and put them in yogurt, and he ate it all. We went to Miller Merry Manor daycare about 10:30 AM. I stayed with him till 12:15 and returned at 12:45. He had eaten a little food but when I left, they said he started pushing all the doors hard to try to get out. I am physically and emotionally beat up and tired right now. We came home about 1:30 PM and he immediately sat in the bathroom on the toilet. Sometimes the seat up sometimes the seat down. He looked at his wallet and cell phone. I kept checking on him. He came out a couple of times. Then when I checked about 4:30 the floor was wet with urine he didn't have his diaper on. With great difficulty I got a diaper on. He looked angry on his face so, I decided to get him out of the house and go for walk. He didn't understand. So, he pushed me real hard, then kissed me hard. I went outside but he wouldn't go. Finally put my jacket and shoes and ran outside, he followed me. As we walked, he got nicer and nicer. By the time we got home he was pleasant again, so we went out to Lagrange to eat. I gave him a bath, he didn't like the diaper, but the quicker I could get the diaper inside pants the easier it was to put his pants on.
Page 18 of 62
He forgets about tearing his diaper off. Good bedtime. Gave him Aricept and antibiotics at 7:45 PM, sleeping pills crushed in his yogurt at 8:45. At 12:45 AM there was lots of shaking and throwing arms for about 15 minutes. Marilyn wrote me another letter; “Hi Carol, I talked to the staff today after you picked Ira up. I don't know all they told you they seem to think he’s very strong. They are willing to try him here again but, they suspect that if you were to leave him for a week, he would become pretty irate after a couple of days. If that did happen, we would be scrambling to Generations in Fort Wayne for medication tuneup. Also, after Kathy came out to your house the last time, she called me and asked what I thought about him going to Generations. She was going to get back with you and see what you thought. After today I really think a hospitalization for medication adjustments would really help everyone connected to the situation. Let me know what you think and let me know if you want me to call the social worker or has she already gotten with you. Is your May trip set in stone or can it be flexible? Do you know how long it might take to get him into Generations or how long they might keep him there? You could come to Miller's Merry Manor directly from Generations, maybe then he won't notice the adjustment as much as if he had to come from home. It would be nice for him to only have to go through one adjustment. From hometown hospital and then not such a big deal to leave the hospital and come directly to Miller’s Merry Manor. It might save you some grief too. Let me know what I can do. Keep trying daycare. If he does not behave well at daycare then he probably won't react well if he is left there for a longer period of time”. I just don't know, I just could not continue to think about these things day after day. Surely, I will turn into a mental mess myself if I keep dwelling on all this stuff. FRIDAY THE 13TH FOR IRA !I’ll try to be brief. After dressing Ira, about 7:30 AM, we went into the bedroom, he was helping me pull up the blankets, he fell flat on the floor-BANG-straight as a board. He hit his head on the table and started foaming at the mouth and breathing very hard and deep. His face swelled up real big and I thought he was dying. I ran over and got our neighbor Marilyn who is an RN and she said he’s probably having a stroke. We called 911, and 15 minutes later they got there. After working on him for a while he started to open his eyes, and after lifting him on the stretcher, his face looked normal again. They took him to the hospital. At 11:30 am I finally got to the emergency room and they said there is no sign of a stroke and he continued to be more alert. They think it was a seizure. They admitted him and he had to fight with them several times, so he was tied tightly, his arms and both his legs, till Saturday morning when I got there for breakfast. A different nurse was on duty, and she allowed me to get him up to the restroom and he was wobbly but sweet again. So, we took the restraints off except the one where he kept trying to pull out the IV needle. Page 19 of 62
For the rest of the day he was up walking around and talking more than I have heard in a long time, and clearly – PRAISE GOD! We got him accepted at “Generations” at St. Joe Hospital in Fort Wayne. Our friends Greg and Connie Layman and I drove him there with their car, because he didn’t need an ambulance as they had thought. At 8:30 pm we left him there and I called at 10:30 pm and he was walking the floor trying to find a door to get out with his coat and hat on. I prayed he could be happy there until they find out what caused the seizure, and get his medicine straightened out. I know he’s headed for heaven when his time comes, but since Sunday morning at Generations, he is so misunderstood and fighting and doing BM’s in the wastebaskets. When they try to clean him up, he fights with all his might. He is strong! They are all strangers, getting into his face to cleanup his messes, and he can’t express himself and often they are not told he can’t hear anything they say. Today he upset the place two times, and they locked down part of the floor to keep him from everyone else. When I come around, he is sweet and is very cooperative. They drug him up every time he fights, and he becomes so out of touch, but when I’m there he’s happy. I can only be there 1 hr. and 15 minutes in the morning and 2 hrs. in the evening. He can’t find his room so I brought his John Deere blanket today so hopefully that will help. He doesn’t realize there is a toilet is in his room, so he won’t use it, it’s stainless steel and just sticks out of the wall and the flusher is up high. Nothing is right to him, and then, I sneak out on him and leave him alone. Today when I walked in, he said plain and clear TAKE ME HOME. I received an e-mail from my friend Lee : “How my heart is breaking. I believe it’s come to the point where we can pray for a quick release of his soul from the shell that is holding his spirit captive. My prayer is that God will carry his soul home very soon. This has to be so hard for you. Especially when he so lights up when he sees you. I can’t imagine the tug this is on your heart. You certainly have done all you can for Ira and I’m sure it’s not been easy. Alzheimer’s is such a debilitating disease, and it can come upon any one of us. These last few years have certainly had to be a steppingstone to know the strength of the Savior and to know what it means to carry on in His power, mercy and grace. This didn’t just happen. God called you out to be the recipient of His love because he knows you are teachable and will seek His face and will glorify His name through Ira’s condition. My prayer is the day will come when you can thank the Father for all this and for the things’ he’s taught you. Few are given that opportunity so consider yourself to be in the very center of the eye of God. Dear Lord, my prayer for Carol this morning is that she would be able to lift her heart above the rubble that the flesh creates and seek your peace as she lovingly cares for her husband. Help her to understand the battle is not hers but yours. She needs your uplifting arms to hold her and carry her from day to day. Your ways are so superior to the flesh we are bound by. Perhaps the very soul of Ira is now experiencing something so wonderful that the flesh cannot conceive of it and therefore is fighting for release of Ira’s spirit. Page 20 of 62
I am so thankful Lord, for life’s mysteries because it causes us to give ourselves fully to you. Please release Ira from this battle going on in his mind. If the time is not yet, then Lord I urgently plead for peace. Your peace... not the peace of the world, not the peace of the drugs but perfect peace. In the name of your Son. May it be so. Love you�. I also received a letter from Mike Rippey that said: “I was saddened by the news of diagnosis of Alzheimer's disease. I have some further bad news. I have been diagnosed with stage one, Parkinson's disease. As you know Ira and I are suffering from two of the most common neuro- afflictions where certain brain cells for some unknown reason started to die. I just wanted to help you understand some of the feelings that Ira and I are going through. I have asked God to enable me to express this feeling along with our greatest fear. Alzheimer's disease and Parkinson's disease have some things in common. They are both progressively debilitating. One mentally and the other physically respectively. Progressive might not be the best word. Perhaps regressive. The saddest burden we bear is the way we can feel ourselves slipping away. It's like being pulled into a dark hole which has no bottom. We lose something of ourselves every day. Our memory, of the many things we cherish , our personality, our facial expression. A slowed deterioration of every part of us that makes up who we are. People perceive us only as the most recent time they saw us. They forget how we were when we were healthy. Some are ashamed and embarrassed for us as the disease becomes more visible, and we become less visible. We are ashamed of what we have become as the slow death progresses. I am ashamed of my shaking tremor and hate for people to see it. They look at you when your hand or body shakes as if you have leprosy. I am sure IRA is also ashamed of his condition, loss of memory and the increasing difficulty at communicating. We certainly can't help our dilemma and one would say therefore you have no reason to be ashamed. Nowhere, but in our mind and the minds of many others we do. I became very depressed when I looked ahead at the last stages of our disease. It still tries to steal your dignity and make you look like a blooming idiot. My wife Margaret was the first to tell me you cannot look ahead, rather we must, and you must take each day one at a time. Margaret further consoled me to not let the bad days, nor the fear of the future bad days ruin our good days that still remain in us. We try to prepare for the future of our family, as best we can. Please let me tell you what we fear the most from these diseases. We can expect most people to see only our disability as it increases over the years. We can live with that although if there was any way we could prevent it we certainly would. Bear with me, for this part brings tears to my eyes. We are deadly afraid for our loved ones, our family, to lose sight of who we are, who we still are, and in your mind lose our dignity. Keep in mind this slumped over trembling man, this completely disorientated man, this aggravating man who now has become the shame of the family to outsiders is still hidden inside that prison and shackles of the disease.
Page 21 of 62
We are still the man you love and married. Remember the kindness, the Love, the hard-working, the encouraging, humorous, faithful husband, the spiritual leader, the head-over- heels in love with you, a lover, the way we brag about our wives, the usual happiness we brought you for years the way we were then. We are still there even though you cannot see any resemblance of us. Remember the good times, bad times, in between times, the honor we gave you, the patience we showed when you were somewhat less than on-top of things. Remember the impatience and the crankiness we demonstrated so we had to apologize, forgive each other and go on. Find a way to bring the real man you married into remembrance because, believe me, it will be difficult to remember but, remember you must. Seeing by faith what we will be like in heaven, free from our prison, free from our disabilities again. One day we will trade our diseases, and disabilities in for a pair of angel wings to take us to heaven. In some cases, death can be our friend, free from our physical curse and allowing us to face God face-to-face. To worship him for eternity, waiting for our loved ones to join us! Isaiah 48:10. Sometimes I think about people who don’t worship God. How do they deal with this stuff without Jesus to talk to? I feel so sorry for non-believers. I am sure I would feel like I have been put through a ringer every day and night if I didn’t have my faith and Jesus to hang on to. The Lord is my strength”. Brief description of letter sent from Elder Attorney who was handling Medicaid. He wrote this letter to reiterate and cover again some of the numerous issues we had discussed, and that his charge would be $3,500, in full up front, non-refundable. This came on the 17th of April also, when it rains it pours on me. The planning I perform for the at home spouse cannot be reversed and if the one at home goes into the nursing home, the planning and the trust I have drafted for the one at home cannot be changed. At this time, they are asking for any gifts in the 3 years prior to the application. The assets will have to cash out or transfer their existing accounts, sometimes this will cause taxes and expenses however must be incurred if the client’s assets are to be protected from the nursing home spend-down. On and on, please discuss any penalties and the income tax ramifications of cashing out or changing the ownership of an annuity, life insurance, or IRA’s with your tax preparer and financial planner. For a person in a nursing home to qualify for Medicaid the nursing home has to qualify. A Medicaid resident can’t have any assets in their individual or joint name, (news to me), with their spouse or anyone else. It continues on with 4 small print legal pages of things for me to do, completely overwhelming. On the 18th I received this note from a caring relative: “Hi Carol, please don’t take this the wrong way but I don’t think sharing the part about Ira’s bowel movements and diaper issues are appropriate. Page 22 of 62
We all understand you are going through a difficult time and writing about it helps you but, some things should go unsaid and private. I feel that you are degrading Ira and belittling him as a man and a person. We all want to remain with the picture of Ira being the wonderful, loving and smiling person that he used to be. Why would you want your grandchildren remember grandpa as diaper wetting person? I suggest you just tell them that Grandpa is not doing well, and he is not himself anymore and, that the disease is progressing and changing him. It is nice you keep everyone current on his health we all appreciated him, but my advice to you is keep it simple, such as where he is at, how he is having a hard time adjusting to a new place but, not how he can’t use the toilet. I hope you don’t take this as an attack but, just a piece of advice. You always have me to talk to about more personal aspects of Ira”. My thoughts were different, by writing about the daily activities, even diaper changing and physical struggles, I feel I am able to make a very difficult situation a tad easier, if not for Ira, maybe for me. Keeping all this stuff inside, and not having an outlet where I am not able to release my feelings would no doubt be bad for both my emotional and physical health. My children and grandchildren need to recognize how I feel, I need their support. I received a letter from a good friend Lee; “My dearest, I’m sure it’s difficult to see this process move from stage to stage. It also will be a greater assurance that the drugs will prevent him from hurting himself when the combative urges arise. You know, through this whole process you’ve been experiencing, it is teaching me, to enjoy every day you have because the situation you and Ira are in could be given to any one of us. I see our lives changing and I see my kids facing dilemmas we faced as we moved from milestone to milestone and it makes me realize that life is a spiral and it goes on and generations move from one milestone to the next and we never know where the spiral we’re in will carry us. I thank you so much for letting us be informed of what your life has been like and it’s all the more reason to write some final chapters in your story. Life never has a final chapter, it just moves from what we know as reality to eternity which we have no insight in, until we take that awesome step...something to look forward to and be excited about. I truly believe that in God’s infinite wisdom, this is his preparation time for you to be ready to let Ira move on and make his final run. What we often see as tragedy, God means for good, as Joseph said to his brothers when they saw him in Egypt and he forgave them for selling him into Egypt as a slave, “you meant it for harm but God meant it for good.” I guess if I could encourage you in anything it would be to rest in the assurance that what God has done and is doing is what is best. I guess I would encourage you to embrace his plan and rest on the mighty breast of Jesus knowing Ira is fully in his care. Your experience will be valuable to help somebody else walk through this valley. Your strength has been phenomenal, and your courage is definitely upheld by the spirit that sustains you. You are living a testimony and my prayer is for strength and submission what God will continue to carry you through. Submission is not easy but is needful when we fully trust what we can’t understand.
Page 23 of 62
4/24/2012 Admitted to Millers Merry Manor He’s adjusting pretty well, I just left at 7 pm and I always sneak out, the nurse let me out the back way. Earlier I tried to leave, and he saw me and ran after me. The poor guy he can’t express himself, so he just keeps walking around looking in every room for me. He doesn’t get mad or talk about me at all. I was there 7 hours today, and yesterday 8, so I do spend a lot of time there with him. The night I had to leave him there for the first time, my heart tore into a million pieces, like Humpty Dumpty, and I’ll never be the same again. At this point I am totally wiped out both emotionally and physically I want to take him to church and Lucy’s ice cream, but I’m afraid I won’t be able to get him to come back into the nursing home. Pray for him to have PEACE where I stuck him. Message from friend: “I can’t imagine how difficult that must be! First of all, you only did what you HAD to do-Ira wasn’t safe, and neither were you! At least now you will be able to get some rest and have more strength to face each day’s challenges. It will probably be a good idea to give Ira some time to adjust to his new surroundings, before you take him out. When the time comes to take him outside of the nursing home, could you possibly have another couple with you so that there is a man to help if Ira gets stubborn or unruly. Are your children supportive? Do you have family, friends, and church support? It really does “take a village” in cases like yours-this cannot be a solitary journey. Hugs and Prayers”. “Thought of you when I read this devotional this morning. Hope it will encourage you. Look forward to lunch tomorrow and getting to see Ira’s new home. Kathy. “Perseverance means more than endurance—more than simply holding on until the end. A saint’s life is in the hands of God like a bow and arrow in the hands of an archer. God is aiming at something the saint cannot see, but our Lord continues to stretch and strain and, every once in a while, the saint says, “I can’t take anymore”. Yet God pays no attention; He goes on stretching until His purpose is in sight, and then He lets the arrow fly. Trust yourself to God’s hands. Is there something in your life for which you need perseverance right now? Maintain your intimate relationship with Jesus Christ through the perseverance of faith. Proclaim as Job did, “Though He slay me, yet I will trust Him”. Faith is not some weak and pitiful emotion but, is strong and vigorous confidence built on the fact that God is Holy Love. And even though you know Him, disaster occurs in your life when you lack the mental composure that comes from establishing yourself on the eternal truth that God is holy love. Faith is the supreme effort of your life, throwing yourself with abandon and total confidence upon God. God ventured His all in Jesus Christ to save us, and now He wants us to venture out all with total abandoned confidence in Him.
Page 24 of 62
There are areas in our lives where that faith has not worked in us as of yet, places still untouched by the life of God. There were none of those places in Jesus Christ’s life, and there are to be none in ours. Jesus prayed, “This is eternal life, that they may know you”; John 17:3 The real meaning of eternal life is a life that can face anything it has to face without wavering. If we will take this view, life will become one great romance-a glorious opportunity of seeing wonderful things all the time. God is disciplining us to get us into this central place of power. April 14 , 2012 Admitted to St. Joseph Hospital in Fort Wayne. Is it possible he is getting better and they are trying to treat him as unaware of life and he seems very aware what's going on? Even though someone has Alzheimer’s, and their brain is not functioning right, they know things are not right. They continue to feel things in their heart but not in their head. The heart takes over and does all of the thinking. They feel things. I’m no doctor, but this is my husband and I think I know him better than anyone. When he walked into the Generations unit, he looked at me and said, “I'm not sick I don't need to be here”. He is constantly asking to go home, and he wants to go to the car. That didn't happen before, but maybe one time a week, and I could redirect him. He hit me so hard yesterday when I came, I cried lots of tears. Every day he's getting more comfortable when I leave. They think it's okay for him to see me leave, but it makes him furious. Tonight ,Ross and Lorena were there with me, and they tried to distract him, and it didn't work he turned as we were going out the door and saw me leave, and he hit several nurses. Before he was not alert like this and was pulling his diapers off when they didn’t know it. He's better with letting them put them on. Tonight, after we left and he hit the nurses, they drugged him, and he went to sleep in someone else's bed, so they let him sleep there. He's never going to get out of there if he gets upset when I leave, I feel like he is more alert than ever. I felt I could handle him at home. His heart and soul is breaking, no one listens to his heart, I'm sick and so sad with the way they're handling him, and I don't know what to do! Another E-mail from Marilyn “Okay stop and think how he was before he went to the hospital, the day he passed out and fell. He was not on the medications he is now. Maybe it is the new meds that are making him better and more understanding of what is going on. Talk to the doctor and ask what he thinks would happen if you took him home and kept him on these current meds. He would be happy being home with you. He would be easier to handle since you are the only one he is not hitting or trying to hit when personal care is performed. You would not be feeling sad or guilty. The downside. You would be strapped to him 24 hours a day. How do you feel about that? You would have to deal with the incontinence again. How do you feel about that? You could not travel anywhere without him.
Page 25 of 62
The possibilities. Maybe traveling somewhere wouldn't be so hard now since he is on the medications that he wasn’t on before the first hospitalization. Maybe the new diapers that fasten on the side would make dealing with the incontinence easier for you. Maybe you could get home healthcare or someone you pay privately to sit with him, someone he likes and would talk with him or color in a book with him so you can get a break. My predictions. The disease will get worse with time, no one knows for sure what that will do to him. It is very possible that with time he will become more forgetful. At some point he won’t know you, or his home surroundings. When this happens, I think he won't care who does his personal care and may not know the difference between you and anyone else. Maybe what he needed in the beginning was to go to Generations and get him on these new different meds, and perhaps he will be okay for a while again. Dr.Egli will be his general practitioner and the psychiatrist will be his specialist. You cannot let the two doctors treat him for anything without one knowing what the other is doing. If you bring him home, what if he’s not eating, what if he gets violent”? I responded, “Thanks Marilyn, I appreciate your honest thoughts. Today was a bad day again, it seems I can’t have a good day anymore, I am weary. I am waiting for the inevitable and I feel like a zombie and totally numb. He tells me over and over “ I love you”. When the disease began, he would often tell me 50 times a day. I keep telling him “ I love you too”. I want him to know he is also loved as he makes the transition from this life to the next. Is this really me? Is it really Ira? We know that no one is going to leave this world alive, Jesus, this too will pass. I was there at 11:45 AM, and then with Ira we had a short meeting on dementia at Generations. Only Ira and I showed up, and I left without him seeing me. I thought we did good, but after 4 o’clock I got a call from Generation stating he was running down the hall looking for me. One of the weird ones there reached out his hand to shake Ira’s hand and Ira grabbed it and twisted his arm. This guy is out of it most of the time, and he also flirts with me a lot, his voice is very loud, and I think Ira maybe hears him sometimes. They locked Ira in an empty room, gave him a shot, and took him down to his end of the ward. They removed all the other patients, and locked him down there with only one nurse, and a security guard the rest of the night. They called me again and asked me not to come because it's when I leave that he falls apart looking and trying to find me. An e mail from my friend Connie: “Again, I am so sorry, my heart breaks to think of you two. Question has come to my heart before and so I will ask it now, what would it take for you to bring Ira home? What will have to change at your house to keep you safe if something happens? To help you to be able to sleep at night.
Page 26 of 62
If there were no obstacles, what would you change, so you could imagine having him at home? What kind of help would you need? If you brainstormed and wrote down a list about the things that we need to change to make it happen, I wonder what it would look like? May you see God's peace and grace through this”. My list of what we need to change my home: You remove all carpets and couches and beds. Safety: have a place to run for safety day and night. A place to safely sleep at night. Someone else to stay up at night and get him up to the bathroom and change his diaper. To have him home, all things taken care of would be wonderful for us both. I would not be able to leave without someone there all the time, lots of laundry daily. He might still mow the grass, and probably spend most of his time talking to the mirror to his imaginary friend Larry, while sitting on the toilet. He could watch the bird feeders and sit on his recliner. He could run the vacuum, poorly, he wasn't interested in getting the mail in or looking at the mail anymore. In my daily bread yesterday was this statement, “there is no bond on earth nor any separation so bitter, as that which occurs in a good marriage”. Thank God that is true for Ira and me, I hope it's true for everyone who reads this. I didn't go see him at all today, Ross and I talked it over and since every time I leave, he gets combative to find me, my hope is no more lockdowns. Right now, he's been in a lockdown area for over 24 hours, and I’m sure he’s restless to get out. I keep praying and hoping for the stamina and strength to see him through this terrible time in his life. I just wanted to go somewhere today and cry. My husband is imprisoned in a body and mind that never was his. He was removed from Miller’s Merry Manor, and he has been back in Fort Wayne since Tuesday. They forced me to take him back to Fort Wayne from the nursing home because he got combative with changing his diaper, and I guess a few other small situations. I was broken and still am, pray for his comfort and peace as I can only visit 30 minutes, in the morning and thirty in the evening. He’s pretty much stuck where he doesn't want to be without me! For me to drive an hour and a half to visit only 30 minutes and then he gets in big trouble because he wants to go home with me, it's not fair to him, I don't how much longer I can take this? E Mail from Lee: “This is the third time I've written this. The enemy does not want me to send you this, I thought because twice, I have accidentally deleted it and I don't know how I did it. But here's what's on my heart. Oh, my dear! I have no way of knowing what you're going through. I know the ache in your heart is deep. When you think about what is best for Ira you may have to put your own desires aside and endure that bitter separation for a while. Maybe with a few days of separation it will give him time to forget what he is combative about.
Page 27 of 62
I know that sounds hard, but his protection and well-being is priority and even though it is heartbreaking when a loved one doesn't always remember things we want them to remember, it can be a blessing in disguise. You don't want to get hurt and I know you don't want him to be angry. This is something I want to share with you because of something the Lord opened my eyes to the last couple weeks while the Hoffman’s are dealing with the loss of their little three-year old. How much can one family take? This is where the Lord has been letting me meditate on Romans 12:1”. “ To be not conformed to this world but be transformed by the renewing of your mind to prove what's the good and perfect will of the Lord”. “I always thought that verse pretty much was directed to new Christians as far as the first step we needed to take. I believe that is something we do every day. Every day comes with new challenges that God has ordained as a part of our growing process and the only way we can endure those challenges and changes he has in his plan, is by constantly renewing our thought process to see his perfect will and everything that happens. What a privilege to be called on by God to receive his new blessings every morning by embracing the days challenges and searching for his mercy every day. Tough as our days can be, we are all unfinished projects and these old clay pots we live in have to be broken and remolded time and time again to make us stronger and deeper. So, my prayers are with you”. To my daughter Yolanda Please help if you can, make a call to Generations or to the doctor, it was a very mean night for him, and he is miserable. He is in confinement. The nurse said he was mad, and he hit and kicked, and tried to fight with a toothbrush. He is so sad and miserable, but I can't bring him home like this. I need some answers. He had a half hour in there that he wasn't mean, he can't get out of the confined area, and is smart enough to know he doesn't want to be there, and now I'm never there either. He is all alone and been told he can’t do anything but walk around about seven bedrooms and a small dining area and a small TV, but he doesn't watch TV with interest. I think if I were there, he would be happy, but then he would be sad again when I leave. It is so terrible. I don't think I can stand anymore bad or worse news. I am taking every minute as it comes. I am sitting with him and I feel so helpless, just don’t know when the end will come? They haven't showered him since I did Saturday night. I need to help but I can't come, he is still very normal when I'm around him. With all the meds and shots and hitting he is losing his spirit and his mind. Isn't there some answers? I have cried more today than ever, and I've had so much sadness with all this and the divorce mess at your house, I am so worn! Email to my son Ross and daughter Yolanda: They still have dad on lockdown, he is going to go completely crazy if they don't let him out of there, it's been since yesterday afternoon.
Page 28 of 62
The social worker said the doctor gave us three options, taking him home with scheduled help and more meds, or possible ECT treatments which they put him out and stimulate his brain with shock treatment, for three to five minutes. The whole procedure lasts about three hours with the recovery time. We can limit his visitations, at least at the nursing home for a couple of weeks and see if he adjusts. They won't take him back till the records show he has calmed down. The shock treatments also increase memory loss, and they calm his whole body down. Also, I asked for a clean, complete evaluation from the neurologist, I'll let you know when they call with some answers. Mom I got home at 10:30 at night. How much time? He's been locked down in the back area since about three on Sunday afternoon. They have not showered him yet, nor any baths since Saturday night when I showered him last. There is no cell phone. He played with it constantly, I haven't seen it for several days. They said today, he was putting blankets on the different beds and going from one room to the other. They are driving him crazy with no one to interact with, nothing to do, and no wife or friends coming in. I bet he has not been shaved, I know no shower, just people trying to make him stay in where he doesn't want to be. How much punishment does a man have to have for trying to twist a man's arm, the same man that is always flirting with me and wanting to marry me every time I walk by. He's got to feel so helpless and all alone. He understands a lot more than you think, he seems very normal for him. I was with him Sunday and Gladys said he seemed normal when they saw him, he even knew their names. Reply from Yolanda: I know you are concerned and saddened by the way dad is reacting to his care and surroundings. He does not understand what is going on nor would he if you changed his environment again. Remember change is extremely difficult for him, he needs routine. It will be hard, but you need to step back for a few days and let the staff figure out a plan that works for him. If you don't take care of yourself ,you will be worthless to him and put yourself at risk of a nervous breakdown. I have emailed Ross and he also feels you need to take a break. I would try to call and talk to the social worker and nurse tomorrow. It is what is best for both of you. He can't come home. He is strong and confused and you would get hurt or he also. Wish I could make it easier. Unfortunately, I see cases like this on a weekly basis. It will not get better. My thoughts: Why can't all these experts find an answer? Why can't they do a hearing test to see if the brain does hear? If not able to hear find some type of hearing aid that works for him. He has no way to express himself to strangers and they are treating him like he can hear and restrain him accordingly. He can't speak to me at all. He didn't eat breakfast and had a terrible time with lunch and dinner.
Page 29 of 62
He's not as steady as he was while walking, his pupils are very small. His hands are always cold, he can't dress himself, he is so much worse every day. Why am I allowing them to put him through all this? There are days when you think he’s improving even if only for a short time. He just goes back down again. My husband is dying a slow hideous death as I sit here watching. If I could see and touch dementia, I would pound it to pieces with one of Ira’s many hammers. May 17, 2012 to Ross and Yolanda Ira is in very bad shape and sometimes unable to straighten his body. I’m not sure since this hideous disease plays sneaky tricks, but I would say that he is getting closer to a time when he will be completely bed ridden. When I walked in, he was lying on someone else's bed with scrubs on and no shoes or socks, and his face looked slightly swollen, but he was sleeping well. So, I talked to the nurses a little, got a list of his meds, and they said he has been walking a little, and then he lays down and sleeps somewhere, even on some of the couches. I woke him up and he started crying, he looks so broken and lost. I took him down to his room and put lotion on his cold dry feet, and I put socks and shoes on and his regular clothes. He felt quivery or shaken way down inside, like his nerves were shaking, and he kept saying he was cold, so I changed him from shorts to sweats. We walked a couple of times up and down the hall, but he hung on to me almost leaning on me and walked very slow compared to his normal walk. I guess that is the only way he can exist, he is not combative, he is one sad man. Eating is very confusing now, he tried to pour milk on his meat and potatoes, later he took a salad poured on top of his cake. He ate his bun with a fork, and when he first sat down to eat, he opened the butter and scooped it out with his finger, and almost ate it, but I stopped him. Just thought you'd like to know his condition. Today so far has been especially disheartening. Ira’s mind simply wasn’t working at all, gibberish of all kinds of unconnected words were coming from his mouth. I am pretty sad. Mom May 18, 2012 from Yolanda“I spoke with the nurse June. She said he was doing well and to ask about plans to discharge. She said I needed to speak with the social worker. I am trying to connect to her. I just tried to let them figure it out and get him released back to Miller's nursing home. I asked the social worker to talk to you about assisted living memory units. Hang in there. Yolanda”. May 18, 2012 from Ross. It is a sad state but if that is what it takes to get him there it's better than going someplace worse. I think you should get on an every-other day schedule. I would just go in the mornings whenever the nurses feel is the best time of day to visit. Let's build on this progress and not make it worse so he can get back to Miller's nursing home, hang in there mom. Page 30 of 62
Notes from one of the nurses to me. He pushed staff when redirected out of a peers room. Angry combative about changing his diaper, Very aggressive. Irritated, clenched jaw, piercing eye contact. Sent to friends: I know you are praying for IRA. I am very weary; Ross has convinced me I need to go just once a day to Fort Wayne. Before when I'm in town I have been leaving him about 1:30 and coming back at 6:55 PM. Today I didn't go this morning, but our pastor Larry Byrnes was going to go in to see him so he wouldn't be all alone. He is very drugged up, having trouble eating, mixes his food, and often tries to eat with his fork. I feel the drugs are affecting his vision, besides walking slower, a little unsteady, hardly any words anymore, he is not a happy man. He holds onto me for dear life, it is so hard to see he can't figure out how to dress himself anymore, or brushes his teeth, or put on deodorant. If he doesn't get mad and hit someone, they hope to send them back to the nursing home Wednesday, which will be tough for me because I want to bring him home, he would be so happy. I can't be on duty 24 hours a day and that's what he needs. I'm so sad for his family, that they have had so little participation in our journey since 2002. May 21, 2012 at 11 PM Carol Miller. I feel Ira had a good day. I was going to have a day with no tears and broken heart, but I just got a call at 10 PM from my neighbor lady Marilyn, she is an RN and works as an admissions manager at Miller's Merry Manor. They were planning on having him readmitted Wednesday, but they are concerned that if he has any outbreaks at Miller's they can't keep him. The doctor has determined his dementia is frontal temporal, just a hard disease to control with medicine. Pray that he will be able to stay calm, and not need any more security guards or shots to put him down so we can leave Generations in Fort Wayne, it's been so hard on him. My understanding is that he hasn't had any trouble since Thursday or Friday. He is very drugged, and sad!!! May 22,2012 from Yolanda I am sorry to hear that you were struggling with Dad’s situation. It is always more difficult on the spouse of those with dementia. I would consider a behavior step down unit before you go with any other options. You cannot take him home.
Page 31 of 62
He needs help. You would both be in danger. It will be hard, but the best for both of you. Love you Yolanda. May 23, 2012 written at midnight -The bad news came, Miller's will not take him back! The administrator called me from Miller's, she is going to look into another behavior health care home, there are three in Elkhart. There is Eastlake, Elkhart Rehab, and Woodland Manor. There is also one in Warsaw, and Columbus, Ohio. We'll have to make sure they accept Medicaid, even though it's not in place yet. Another option is to get him a week of ECT treatments and see what he does with it. She feels it is a 50-50 chance it will work for him. Another option would be to bring him home. She encouraged me to have dependable people in the home 24/7. I have a hard time making these 1,000 major decisions since April 13. Could you handle dad at your house Yolanda? Dad would love it and your children, too. The problem he has is he is going into other patient rooms, and when they change his underwear his aggression gets terrible. When he does get upset, it only lasts a little while and it's over. His doctor is going on vacation for a week, so we should know today if we are going to do the ECT treatments so he can write the orders! Feeling powerless. Mom May 24, 2012 from Yolanda Mom, I'm very concerned that you are exhausting yourself you can't think clearly at this point. You need to take a few days and not see him. He will survive. Just like I had to let Matthew cry to learn that he needed to sleep, you must let Dad. It is necessary. If he does not do better, then you can reconsider your options. Home would only make things worse. Please try to do this for Dad and for you. Love Yolanda. May 24, 2012 -a personal letter to myself Sometimes a life can be beautiful or ugly, you just have to take whatever comes. You just can’t change anything no matter how much whining or crying or feeling sorry for yourself, nothing changes the ugly side. Sometimes I can't stand my life, and all Ira is going through. Why can't he have some quality of life, he can't go outside, his body jerks all the time. He can't see his food correctly, why can't he go for a ride in the car, and look around the country? Why can't he enjoy our church and listen to the gospel music? Why can't he take a walk with me somewhere, anywhere? Why can’t he go to a restaurant? Why can’t he be with a group of friends visiting? Why can’t he go to a zoo and watch the animals or ,can he see well enough for that? Why can't he have a reason to laugh and smile again? When he walked into Generations the first time he was better then he’d been for a year, then came the drugs,
Page 32 of 62
shots, security guards holding him down, and now he can't dress himself, cannot eat well at all, can't put shoes on, or express himself hardly at all. But he kisses and hugs and loves me like he never did before. Carol. May 25, 2012– To Yolanda and Ross I need to get Dad out of this hell hole, he has been in here for about 20 days, if we give him the ECT treatments, they can't start them until the doctor gets back from vacation on Tuesday, but paperwork needs to start Saturday or Monday at the latest. I stopped and talked to Jim Helmuth, and he is really pleased with his wife Ann and she is now at Life-care in Lagrange as of Monday. She has Alzheimer's. She is also from our church. Parkview nursing in Edgerton, Ohio has accepted dad. I googled it and, it's about an hour from Wolcottville, so it will be about the same as Fort Wayne. At first, I wasn't interested, but it has been rated a five star overall, so it sounds good. I may try to find someone to go with me today and see it, what do you think? If we start the ECT treatments, they will start Tuesday. He would receive two or three treatments, then again, the next week two or three and then transport him to Ohio. Or I can take him and see how he does without the treatments and then they would have to transport him back and forth each treatment probably to Fort Wayne. Standing alone here in need of help and answers. Mom To Ross and Yolanda May 29, 2012- Thought you would like this update, I just called again, and he now has a fever, so more fighting to get bloodwork. Maybe he will have ECT tomorrow, and no MRI, because they don't think it will show anything different. What about the fall and the vision problems? He was better yesterday, it seems he could see me, but he still can't walk without someone on both sides almost holding him up. They won't schedule an eye doctor, because it has to be outpatient which can only happen when he's dismissed. He gets no help on vision to see if there is a problem from the fall, that was when he fell apart even more. They have not done the ECT treatments yet, but I was told to make sure they got the paperwork started on Saturday. I signed the papers Friday when he was so terrible, now the doctor needs to reevaluate him. We were able to see a doctor about his eyes, and he wasn't able to do anything because of him being combative. The MRI is not scheduled yet, and that was supposed to be done today. It's all about scheduling, and they are sorry they are not getting it done as I was told today. I'm so sick of this place. Mom. May 29, 2012– from Marilyn Faulkner “Thanks for the update. Is he still peeing a lot? I don't expect any MRI will show anything more than what they already know. I already think that vision is part of the disease. Page 33 of 62
That is what happened to the lady we had here. It’s also the reason we had her wear a helmet. I don't think that glasses can help. Whatever he damaged in the fall will heal and he will seem better in that respect, like bruises, sore knees, and etc. But I think vision will stay the same or get worse, that is if it is due to the disease. Is he still strong and fighting the staff when they try to work with him? I hope after the ECT that will stop. If that is stopped, we could take him back in Lagrange. I guess it's too early to tell. If he stops walking eventually due to the disease you would not have to be in a locked unit anywhere which might make placing him easier. If you bring him back to Lagrange or anywhere, you should ask about hospice again. If the disease has progressed and he is going down rather quickly, then hospice would pick him up. When that happens, you could put him in a nursing home, hospice pays the room and board, and you wouldn't have to pay out money or put him on Medicaid. I think that is correct. If he is not walking you could manage the incontinence better. You could take him home with hospice, they would tell you the max of hours they could be in the home to help. You could decide if you could manage the rest of the time. Like you, I am praying for him all the time�. May 29, 2012 at 10:45 PM to Yolanda They tell me so little. If you call them, they will probably respond to you, but I guess he is still combative some of the time, especially last Friday when he fell and was put in lockdown. I know changing the diaper is still a problem. Saturday night they just left him in the chair all night and didn't change his diaper. When I got there at 11:30 AM I changed him the smell was strong and now he was having sores on his bottom. He also had a sore on his foot, they put his sandals on wrong and it rubbed two blisters on his foot. I made them give his tennis shoes back so that the blisters would heal up. They hid them when he kicked one at one of the nurses some time ago. They have no time to care for the residents, way understaffed, that's horrible. Do you think he is going to die soon? If the progression is all that fast, should we delay the ECT? I truly believe Aricept has done wonders too slow it up. At Generations they've taken it away he is sliding downhill fast. Today he was walking better, very wobbly, much more out of it, talking to himself and everyone around, he hadn't talked much for a long time. They took an x-ray today, and he has a slight case of pneumonia, fever of 100, too much sitting around but the hospital doctor said with walking more again, he should be okay with some antibiotics. I don't know where to turn. Mom
Page 34 of 62
May 30, 2012 6:30 AM: from neighbor MarilynIt does sound like the progression of the disease is happening rapidly. I don't think it's anyone's fault, just how the disease works. The ECT will not stop the disease. I understand if it works it will just keep his behavior easier to deal with. I don't think there is a thing you can do to stop the disease. If he had cancer it would be easier to understand and make more sense to you. Perception is what I have been trying to explain when I said his brain does not see his shoes as he did a few months ago. We need to concentrate on keeping him as well as we can and comfortable. May 31, 2012- from neighbor Marilyn Faulkner. “Hi again. I googled Ohio Medicaid and found the eligibility rules on an application. It says to apply, one must be living in a nursing home in the state where you are making application. That means that once he sleeps in Ohio one night he can apply. You don't need your financial people to do the application. The nursing home in Ohio will do it. It might take 3 to 4 months to get it to go through, but they won't care because the Medicaid system pays them back to the date of the application. They will not make you pay anything while they wait if they are pretty sure he is going to qualify. Worst case would be that he would have to sell a truck or one of the cars. All they will have to do is apply to the Ohio Medicaid people for you. I wish you would have your financial people call the nursing home. According to Generations financial department this particular nursing home gets Indiana people on the Ohio system all the time. If he ever does move back to Lagrange, we just do the application for Indiana. Again, not a big deal. The hospital cannot keep him forever. Right now they are billing his insurance and when he first goes into any nursing home the nursing home will be able to bill the insurance for a week or two and that will give you time and let them help you. I will still fax all of the Indiana information that Dina compiled to the Generation Southwest and you can go from there. This Ohio nursing home has a really good reputation with Ira’s type of dementia. As far as Dina goes in getting her to accept him at Miller's Merry Manor in Lagrange, Ira’s condition cannot stay the same. As his diagnosis progresses it will change again, and probably get increased behaviors again. The Ohio nursing home is supposedly able to deal with these changes so I do not think he would have to be admitted to Generations again. Whatever his condition, he is in currently, one thing is for sure, it will change, and he will regress. This is just how the disease works. I know this is so very hard and I cannot feel any worse for it than I do. I think the best advice right now would be to put him anywhere they are used to working with his diagnosis and pray for the best. I know that Dina will say, he will get worse again and if he is at Miller's Merry Manor then we, you and Ira will have to go through all of this again. I will talk to you tomorrow if I find out anything more. I wish this was not happening but neither you nor I can fix it. We just have to keep pushing on and get through it. I have no doubt you will survive this and be strong again.
Page 35 of 62
June 2, 2012 letter received from attorney Hartman concerning Ohio Medicaid. “We really need to decide what path we are on and where we are going and where he is staying . The last I heard this Friday was that he was now staying in a facility in Fort Wayne Indiana. This is not an issue anymore, at least as of Friday, that is what I was told. The fact pattern seems to be constantly changing here. You're apparently getting input from people who either don't know all your facts or don't know about all of your assets. They may have never actually done a Medicaid application, probably likely both, from what I am seeing. I am trying to help you with what I am being told. No matter what state he is in we still have the exact same spin down issue, no exceptions, of one half the value of the snapshot date asset values, no matter what anyone else telling you. Please keep in mind that just because everything is in your name it does not mean anything. The maximum value of countable assets you can have, and I'm being very cautious because I only know of the assets I have actually been told about, is around a cumulative and confined value of $75,000. That is as of the first day of the first month of Medicaid eligibility when I actually apply. That's assuming that the annuity was actually cashed out and you incurred the penalty. The real estate is exempt – however the value of your cumulative assets over and above the $75,000 must be put into an exempt SPI annuity. It can be used to fix up your home or, purchase a new car. The Medicaid application is to be going unless the value of your countable assets are over the $75,000. This has to be resolved and taken care of first before the application is made for Medicaid. You can only be on Medicaid pending if you actually qualify for Medicaid for the prior month, until the first of the next month at best. June 2, 2012 Today Ross and I went to Fort Wayne and picked Ira up at Generations St. Joe hospital and drove him to Edgerton, Ohio. We took him to Parkview Nursing Center where he will live until we can get Medicaid approved. It seems nice with lots of nurses, and good care, a blessing from God. Generations and Miller's Merry Manor tried many nursing homes, and no one would take him, so there was no other option. That is God’s way of leading our lives in this decision. If a closer nursing home becomes available, hopefully, he will be less combative and not have to make a move again, God willing. Pray for his adjustment period, it's about one and a half hours from home. Carol June 3, 2012- 9:30 PM First I was happy to see him pretty comfortable with walking around everywhere, but they said that he only slept 2 to 3 hours at best last night. He was in everyone's room, laying on other peoples’ beds, which is common for him. He lost his tennis shoes, but before the night was over, we found them. He would not eat for me at all, he clamped his teeth, he would not sit down. He just kept walking, didn't know what the toilet was, nor care to sit on it. He pulled his shoes off, but doesn't know what toothbrushes are for, or the shower. If he continues, he cannot eat like he did today he won't last long, although he was walking all over. He ate about half the breakfast, and 25% of the lunch and no dinner. He was trying to put a magazine on his foot, it is just so pitiful. He wasn't concerned at all when I left. I could do nothing to make his life better today, nothing. Carol
Page 36 of 62
June 4, 2012– Carol It was one of my saddest visits. He would not open his mouth to eat, it was like he didn't know it was food. He would not sit down when I put pressure on him to sit, which has worked before. He tried again to put a magazine on his foot for socks. He lost his tennis shoes and would not lay on his bed but for a moment. I tried to shower him, as I had done every day for a month and he just kept walking out from under the shower and didn't want me to put soap on him, I was soaking wet, I tried, he didn't even let me rinse off when I did soap him up. My heart was completely worn out from trying so hard to wash him and accomplished nothing! He didn't seem to care much if I was there, I walked out without a problem. June 4, 2012 a reply from Marilyn Faulkner “Oh Carol, I feel so bad for you. What he is going through must be because of dementia and the type that it is. No one can make someone eat or drink. I think this will change day by day. You’ll have days that he doesn't eat and other days he’ll eat all day. The staff will keep after him to eat. They will give him finger foods to eat on the way as he walks if he won't eat a meal. Part of what they have to monitor is his intake and one of their goals is to keep his weight in an ideal range for his height and activity. Part of it may be an adjustment but I am guessing that most of it is because of the disease. Try to accept what is happening. Try to relax and just love him. Try not to worry. God will take him through the paces and the staff will try to keep him as good as they can. He will eventually be unable to walk and will eventually have to spoon-feed him. I wish you would come to Miller Merry Manor and see a gentleman who used to be like Ira. It would give you an idea of what is coming. When you go there just keep reminding him of things he is familiar with, like the cars, the Lake, the beautiful weather, the grandkids. Some of it might sink in, and also your actions will show love. I think it is out of our hands now. He will be what his diagnosis allows him to be. Just love him”. June 6, 2012 from Ross's wife Lorena Carol, it breaks my heart to read this not so much for IRA but, for you, I fear you have not grasped or understood the disease that has taken IRA. You need to remember that what is happening to Ira unfortunately is the disease taking its toll on him, it goes hand in hand. There is nothing you can do to fix that. It seems that you're fighting a battle that you are not ever going to win. You must also understand that there is nothing you can do to make his life better, Ira is going to have his good days, and his bad days, regardless if you give him a bath or force him to eat.
Page 37 of 62
Just enjoy him, hold his hand, and hug him, stop being so concerned about the rest, that is what the nurses are for, trust me they will not let him starve, just be with him. June 8, 2012 written to Yolanda I feel so all alone with this mess with Dad, and I always knew you would be there for us when this time came. This has been almost 2 months, and no calls for weeks, no answer to emails, what is happened to my girl that always said she would take care of me? I am just overwhelmed! Mom. June 9,2012 about noon I don't know what to share, I am completely at NO answers for my man. Yesterday I called about 10:30 AM and he came out of his room with only a sheet wrapped around him There was a BM everywhere, so they tried to shower him and he fought with all his strength, and it's a lot, but they managed to clean him and gave him some medicine. Today when I called about the same time, he woke up more combative than ever, and they called the doctor and got a stronger shot for him, which they called me for permission to give to him, so it must've been a strong one. Pray for his spirit, that somehow, he can relate to the nurses and what needs to be done. For those of you that don't understand, he has lost his perception. He doesn't perceive a chair is a chair or a toilet as a toilet, shoes are shore. The other day he was trying to put a farm and ranch book on his foot for a sock, he cannot put shoes on correctly or even close, or brush his teeth, or try to spit. It is so sad. Pray for wisdom and peace for his heart. We are back to Generations at St. Joes Hospital, tied down in an ambulance. A bleeding heart, Carol. 6-12-2012-Conversation with social worker Ron. I need to know exactly why he is not given what I've asked for, in over a month he has been at Generations. A normal human being gets sleeping pills, not psychic drugs. When I arrived, his shoes are not laced up correctly. His shoes are loose, and he shuffles more. He could stumble because his shoes are not tied correctly. Kindly check on that when he's up and about walking the hall. He's got to have backaches shuffling and he and doesn't need more pain and suffering. Also, what are you doing to feed him his meals? It helps a lot to lock him in his room and be persistent, and then he will eat. He needs a plastic cup with a straw for whoever is walking with him to carry. They can offer liquid to him frequently, so the food goes down better. June 13, 2012 He can no longer feed himself. Sometimes he reaches out and touches my arm as I feed him. He can’t communicate. There will come a time when he will no longer be able to swallow, at least today he is able to breath and swallow. I am scared. I’m doing my best to keep it all together.
Page 38 of 62
He was good for me last night because I locked him in his room to eat so he couldn't go far. I got all his meal into him while he was on the move. He was on the move all night, pulling the headboards off all the beds up and down the halls. He could not be redirected at all, just on the move constantly. It was that way last night too. Finally, at 7 AM they gave him a shot and it slowed him down a little. Nothing seems to really do the job as it should on him. They have to have some control of him, he was on one to one last night and today. Tomorrow they start ECT treatments in the morning which are shock treatments, and he will be put under light sedation. They will give him a muscle relaxer and perform 3 to 5-minute treatments while he is under. He returns to his room in about three hours. Pray for tomorrow morning when this all begins, pray for peace for Ira, and pray that it will be effective and to his advantage. Carol June 16, 2012–to Marilyn Faulkner. I found him tied in a chair when I got there with his legs down and cold with no socks or shoes on, he was very non-responsive. I hugged him, he just kind of looked at me. My heart sank I started shaving him, he wouldn't let me, put shoes on. I asked the nurses how long he was in the chair. She said about a couple of hours. I need to have help getting him up and see how he walks, he is very unsteady at first, but by the time we got to the end of the hallway he was doing pretty good. Praise God. He became more alert, noticed Bob when he waved, and smiled, I haven't seen a smile in a long time. I tried to feed him his dinner, the meat was dry with roasted potatoes, and corn. He just wouldn't open his mouth and he pushed me away. I kept trying, maybe got two tablespoons in him. I asked for his favorite yogurt that I had brought for him. With lots of encouragement he ate that. When I was ready to leave he was holding tight to my hand, steering me down the hallway, so he seemed about normal by the time I left. He knew me, and actually tried to talk more, he didn't make any sense, but tried to talk. June 16, 2012–to Marion ByrnesHe has more shock treatments scheduled for Monday, and from there I don't know. The social worker thought maybe in a week he could be dismissed. I can’t imagine they will know by then if he is not combative. He still was combative today with a diaper change, and a little washing of his stinking body. He has had no shower for about two weeks. He didn't hardly eat again tonight. I gave him two bananas and he ate both of them. I physically pushed him down in his bed about 6:30 PM, because he doesn't realize a bed is a bed. He started relaxing immediately and his arms that were crossed behind his head began to slowly fall. Within five minutes he was out, so I snuck out, I hope he sleeps all night. The night before he only slept in a recliner about 2 to 3 hours not in bed at all. Carol
Page 39 of 62
June 19, 2012 When I arrived at five yesterday, they had the unit in the back closed off because Ira was being very combative, and the nurse couldn't control him, he was walking around. They opened it up when I came, but tears were already coming to me. He barely recognized me and walked okay. Right before I got there the nurse gave him an Ativan shot, so he continued to get more confused. He fought me badly when I changed his diaper, the nurse said he was mean for no reason before. He hit and kicked me several times, and as I fed him. I had to block his room because he kept on walking away from me. He still kept throwing food at me. As the night progressed, he became more and more out of it, and actually stood and slowly leaned backward a lot. I cried so much in his room as I tried to feed him and change his diaper. He ripped my one ring off, I don't know if it was a shot or the ECT treatment, but he was a mess. I don't know the plan for today, I called the social worker, but no reply yet. God help him! June 19, 2012–from Elaine Slabaugh. “Hello Carol, I cannot imagine your sorrow, disappointment and confusion. And how does one deal with life when it becomes almost unbearable? My concern is for you and your physical and emotional well-being. I will share with you how I dealt with the sorrows of watching my husband slip into another world a few weeks before his death. He tried to take the plumbing in the bath apart because it was clogged up. He would be tottering around with the imaginary hammers building a house. The list goes on. I had to come to the conclusion my darling was already gone. Just his almost non recognizable body was there. Then I was able to deal with it. Yours is the different situation but somewhat the same. And you will have to let him go. This sounds so tremendously harsh and unacceptable. It is our nature to do everything for those we love and fight for what was, as long as we can. And thank God we loved our mates so much we did battle. But somewhere we have to lay down our nature to battle and allow these horrible diseases to take their course or neither will we survive. We as humans cannot change or control the course of these horrible diseases. Please, Carol, my almost sister, you really are if we believe we are one family. I say this because I love you, step away a little at a time. Allow yourself to realize your Ira has already departed. If you're going every day, go every two or three days. You are not abandoning him, do not allow the sense of guilt to come into play. You have loved and cared for your man for almost 15 years. You could change and control most things for him. That time is gone and in reality, so is that man you loved so much, my heart aches for you. I have cried for both of you. I may not look it, but I have pretty broad shoulders. I have been in tears as I understand others in my sorrows. There is room for more. At one point, my first job out of high school, I worked, at a Mennonite nursing home. I went into change a lady and she reached out and hit me. I was astonished when she said, “get that little girl out of my room”. She no longer recognized me. It broke my heart. I had to change patients. She packed a big punch for a little sweet lady. She was no longer my sweetheart. I learned a valuable lesson with the help of the seasoned RN.
Page 40 of 62
My friend was no longer there. She did not need me, she needed someone else. I love you both”. June 19, 2012- 11:30 at night.-from Lorena. “I am sorry, it must be awful for you, but sometimes as painful as it might be, and for the sake of your sanity, the best thing you can do is just walk away and leave him alone. Carol, I know Ross and I sound like a broken record, and I understand your heart is broken. You must really need to start coming to terms that there is nothing you or Ross or the doctors can do for him anymore. I think that maybe you need to talk to someone and have them help you deal with your loss and grief. I know you understand the process of the disease and how it affects a person, but you're writing says otherwise. I really hope that you'll get some professional help to help you deal with all of this, I was thinking of you and Ira.” June 19, 2012 9 AM–Doreen neighbor “Dear lord, we come to you flat on our faces asking you for mercy and grace for Ira and Carol. You promised to never give us more than we could bear, to never leave us. We except this by faith, not feelings – because your word is truth. Lord help Carol to continue to look to you even when it seems you are not in this. We can't possibly understand how there is any good in this. Bring verses to her mind, surround her with people who will lift up her arms. Lord we try not to ask why when your ways are so much greater than ours, when only you see the whole picture. We are but ants crawling around on a picture, with such limited vision. Lord I lift up Carol right now and ask that you surround her with your presence. Give her your peace that passes all understanding that only you can provide in this heartbreaking time. Strengthen her, give her wisdom to know what to do. Father, we pray for Ira. We ask that you touch him with your healing hand–we ask that you show yourself mighty in this Father. We ask for protection for Carol, Ira, and those that work with him. Only you have the answer to this Lord. We pray for you to intervene with your great mercy, compassion and your perfect love for your children. Carol my heart breaks for you. I don't have an answer–only to keep placing it at the feet of the one who does”. June 21, 2012, Martha Miller, Ira’s older sister wrote Happy birthday Carol. God is in control. Jesus died on the cross for my sins all alone. Everyone turned their backs to him; this has helped me more than words can say. It makes me say, I never had a problem, also I respect my brother Ira for the man he is, which has nothing to do with the disease”. June 21, 2012 8 AM He is not walking as well, he still knows me, and he is still combative with me. I find myself fighting to change his diaper, what a battle, but at least the nurses didn't have to do it. He
Page 41 of 62
is better with me than anyone else, he is sitting more often in a chair. He is tied like others in the hospital. God help him to not become a man with no happiness. Carol June 21, 2012, From Marilyn FaulknerCarol, you sound discouraged. I am glad he still knows you. I'm sorry, he has to be tied. You know in an actual nursing home it is illegal to tie someone in a chair. We would probably use a chair that has a tray in the front to keep him in. Restraints are illegal in nursing homes nowadays. Actually, to tie someone in a chair or even use the seat belt it has to be one that the patient can undo in an emergency. I am sure that Ira does not have the know-how to use one in any appropriate manner. They are trying to keep him and those around him safe from harm. But he won't have injuries from banging into stuff or falling or hitting on others while in a chair. He can still enjoy his surroundings as much as he could if he were mobile. Think about if he had a different disease where his mind was good, but his legs didn't work. It would be a sad man aware of his circumstances in his case I do not think he feels unhappy. I don't think his emotions are working correctly. I think you were feeling extra sensitive, feeling your grief and the extra grief that you think he is feeling. Once he becomes a sitting man, he will be much easier to care for and will hopefully be able to be closer to home. How often are they doing the ECT treatments? Do you know how long they will be doing them? I have not been able to contact the family of the lady that we had in Lagrange that was similar to IRA. I have tried but they have not called me back. I wanted to ask them how long their mom acted wild like she was in La Grange, hoping some sort of timeline that you might look forward to Ira being a little less rowdy. I understand you're going through hell right now. I wish I could help you. Try to look for the little things that are good. As long as he is alive there's a chance, he will become more manageable and get to live closer to you. I guess that's one thing. June 25, 2012 I am desperate again Ira can't even stand up, this is his treatment day, he is not going to be combative any longer, he is pretty well gone. I can't talk about it, it's 11:30 pm. and I am so I tired my emotions are shot. They are shipping him out tomorrow somewhere, please, can it be Miller's Merry Manor in La Grange, give the manager a change in her thinking! I need someone to love and care for him because he is no longer going to be a problem. Please take away all this pain he has gone through so he will know nothing. Please help him stop being so combative, please let the nurse from Millers come and re-evaluate him tomorrow.
Page 42 of 62
Please give him a chance Jesus, tears are endless today, Carol From Marilyn Yolanda called me last night. I think she thought you were probably on your way home. She is very worried about you having a breakdown. I forwarded this email on to Dina, the administrator at Miller's Merry Manor. I don't think she will let Ira comeback due to past history with people with his diagnosis. I will talk to her. Maybe you need to let him go back to Ohio and, if he is non-combative in another few weeks, he can be placed closer to home and they will consider him. He will be okay in Ohio. You need to stay home and rest up, let them care for him. If they can care for him without incident of combativeness, then his chances of getting close to home are better. Carol, you are dealing with denial and anger other steps of grieving. And rightfully so. Please get yourself to a counselor. It would be a shame for your family to lose Ira and then you. You need some help with all of this, and your friends and neighbors don't know what to do. Yolanda said she is considering looking at places in Florida. She feels at a loss as to how to help you. I don't think Ross knows what to do either. If he did, he would be doing it. They both love you and they are suffering losing their dad just as you are suffering losing your husband. You all need each other. I told Yolanda I would find that list of places near home and get it to the social worker in Ohio. I think she can help you if anyone can. Yolanda said, “Dad is gone”, and I think she is right. You need to get through the grieving stages, so you can move on with your life. Ira is never going to be the same. June 25, 2012 6:45 PM–lawyer Sorry to hear that he is not getting any better and it's not getting any easier. As I mentioned Monday, I will call Byron Healthcare in Fort Wayne on Tuesday and see if they will let him come in and stay private pay until he can be on Medicaid. Hopefully, this will work out, but no guarantees. He will be in Ohio. Since the rules are different in Ohio, I am concerned that once he is on Medicaid in Ohio he may never realistically or come back to Indiana because his residency will be in Ohio. June 25, 2012. Carol's reply to lawyer He is receiving his last treatment Monday morning at St. Joe Hospital in Fort Wayne he has really changed, and I won't get into that. Due to your concern about being in Ohio, I've called Muncie, Anderson, Indianapolis, and about seven other places in southern Indiana, but no replies yet. They are dismissing him Tuesday to Egerton, Ohio, if I don't find a place to take him. I talked to so many people on the last three days my jaws hurt, but I am on it big-time and doing the best I can to keep him in Indiana. I talked to Byron, Healthcare in Fort Wayne and they won't take him till he is on Medicaid, please let me know what you think I can do?
Page 43 of 62
June 26, 2012–Marilyn Faulkner Hi Carol, I read your last email, sounds like you're pretty, angry. And you are correct. I have not seen Ira for a few months. At least two. I have however seen what his disease has done to others. He is no exception except that he is yours and you love him so deeply. He is lucky in that respect. I can understand you not wanting to talk about it all the time. I just wondered if the ECT had changed him in anyway. Obviously from what I gather from your mailing he is much quieter and less combative. Just know that if I was allowed, I would take him back to Miller’s but, the decision is not up to me entirely. We have to look at the reality of the situation and not what used to be. I am so sorry if anything I said upset you. I did talk and fax to the place in Ohio today the list of nursing homes in Elkhart who might take people and his circumstances. I hope that is helpful. When I talked with Yolanda last evening, she spoke of looking for places down in Florida. There are so many people pulling for him to be in the best place possible. I hope you can get the frustration and anger out and feel the love that your community has for you. They are all hurting for you and praying for you and Ira. July 3, 2012- from Yolanda Mom I know and understand dementia all too well. I didn't say he wasn't in there. Glimmers of hope for better days will be fewer and further between. I've been dealing with hundreds of patients like dad at all stages. I am concerned about your health too, are you getting any rest? July 2, 2012 note to the lawyer Is it okay to sell the Mustang to Ross for fair market value and put it in his name? I can put the pickup in the LLC for rental business, that is all I use it for, otherwise I don’t need it. I have begun car shopping. If I have the money from the annuity in my checking account is that okay? Does the amount I have in the checking account matter? Should the renters deposits go to the bank? They all do a direct deposit to my checking account. So many questions? July 2, 2012 letter from lawyer. Since it's an IRA annuity in his name, you will have to change the ownership of the annuity, there is no way around that, the income tax issue is a given since his qualified money is in his IRA. The only thing you could possibly avoid is the annuity contract withdrawal penalty by waiting for 30 days, for the nursing home waiver to kick in so they will not be penalized. If he stays in Indiana as part of the spend down process you can instead do a new SPIA exempt annuity in your sole name instead of buying a new car and spending money on the home. The car should be sold for fair market value if he stays in Indiana. We can do the exempt annuity for the spend down and a car will not need to be purchased for the spend down if he stays in Indiana. Indiana versus Ohio Medicaid question is still the first question we have to resolve. Page 44 of 62
July 5, 2012 Admitted to Summit City in Ft Wayne IN The process of going from St. Joe Hospital in Fort Wayne to an Indiana nursing home was finally coming to an end. With over 40 calls and faxes two finally said they would take my husband, one in Fort Wayne and one in Morgantown, Indiana. Our miracle happened July fifth. He spent his thirty days at the hospital. Our miracle is happening tomorrow at 10 AM they are transporting him to his new home. He was accepted to Summit City Nursing Home in Fort Wayne, IN. Pray that he will adjust, and most of all they will adjust to his toileting problems, no hitting and kicking, please God! This all started April 13 it's been a long hard journey. Still hanging in there, Carol. July 6 . 2012 Summit city in Fort Wayne called and said he hit a nurse this morning, I need to come in and have a meeting, what did they expect? Pray! July 8, 2012 8:30 AM note to Insurance man-Eric Keep praying he has already hit and kicked the nurses at diaper changing. He fell and hit his head, they can't restrain him, so he is just going and going up and down the halls. He’s not too steady on his feet. Eric, also cancel the scooter and also need you to cancel the Jet Ski, let me know the payment amount approximately for this month. Carol Miller, standing in the need of prayer for my man. July 8, 2012 8:30 AM to Yolanda I hope you are okay, children and husband included! Dad has had nervous energy bad the past two days, walking the halls, he is not really steady. As you are aware, he can't be restrained, and they can't watch him constantly. They called last night about 8:30 PM and he had apparently fallen down. He had a black and blue bump on his head and blood in the middle, but he seemed okay. It seems they are scared of him, so the diaper is a problem to get changed very often. I do understand. He holds on to his pants with both fists as tight he can, and when we finally get his pants down, he hits and kicks. They gave him some meds to slow him down about noon yesterday. I got there at 12:30, and he was sitting with his head down. They were finally trying to feed him juice when I got there, the food was cold, I had them heat it up and he ate every bite. July 13, 2012– From Yolanda I'm sorry to hear things are so bad. Hopefully from your message Parkview can help him. I will call this weekend and we can talk. I spoke with Tracy. She said you needed an eye doctor.
Page 45 of 62
Maybe Tracy’s husband Kevin can help. July 13, 2012- I went to Elkhart with my sister Norma and worked out at Fitness USA. When we left at 11:30 AM I had three messages on my phone, all from Summit City nursing home in Fort Wayne. The worst possible news, Ira had pulled the flat screen TV off the wall and pulled the fireplace off the wall. We were not going back to Generations. Parkview Behavior Health was the only option. My sister Norma and I headed for Fort Wayne and picked up my friend Jerri who was maid of honor in our wedding. She was going to help us with directions to get to the right place. We found Ira in the ER with two of the employees from Summit City staying with him which was very kind. They arrived at the hospital at 12:30, we got there about 2:30, and then we stayed with him until 8:30 PM. They finally decided Parkview Behavior Health would not take him, because they didn't think they could do anything more than Generations had done. Summit City Nursing home had no choice but to take him back! What a nightmare, they didn't want him back because they felt he might hurt a resident. but he had not, and praying he will not, and that they will be understanding and make a way for my Ira. July 13th Admitted to Summit City. Released on the 14th again. Later that same day–This was a therapy bicycle pedal on the counter, and it was there yesterday too. Ira got curious about it, picked it up, and one of the other residents tried to take it away from him. They ended up swinging back and forth. Now Parkview Behavior Health will not take him because he was involved with another patient. That piece of equipment should not have been up there, but they are forcing him out! I am so done, I can hardly breathe, Carol. July 15, 2012–from missionary friends in El Paso Texas Joe and Esther Bontrager Father God in the name of Jesus, I ask you for Carol at this moment. Give her strength to continue walking this valley that you have led her to, help her to see that your arms of love are surrounding her, you care very much about what happens to Ira as well as to her. Fulfill your purposes in her life as well as her beloved. I ask your angels to watch all around Ira and Carol and provide every need that they have in this moment. Raise up friends who will be at her side as a support system in this deep, deep trial. In Jesus name amen. Hugs, Esther. July 16,2012- a letter to Dr. Egli and his staff: A brief summary of life with Ira and Carol Miller: Friday the 13th. On April 13, Ira fainted and was foaming at the mouth, we called the ambulance. They tied him down on a stretcher because he had no idea what was going on. He spent 24 hours tied down at Parkview Noble Hospital in Kendallville, Indiana, and then was transferred to Generations at St. Joe Hospital in Fort Wayne.
Page 46 of 62
I think for approximately 10 days he was at Generations then transferred to Millers Merry Manor in Lagrange for two weeks. He was kicked out from Millers and sent back to Generations. He spent about 25 days there. No nursing home would take him, finally we went to Edgerton, Ohio to Parkview Nursing Center. They said they could handle him. He was kicked out after one week and sent back to Generations, for about 30 days. After over 40 calls and faxes trying to place him in a nursing home, only two nursing homes would take him. One of the nursing homes was Summit City nursing home in Fort Wayne. He was there six days and they kicked him out and he had to go back to Parkview Hospital emergency room. They tried for 8.5 hours to get him into Parkview Behavior Health, but they wouldn't take him, so he was sent back to Summit City for one more day. That is when he picked up a therapy pedal bike that was on the nurses desk. Another resident said NO and grabbed it, and a struggle started. They blamed Ira for the behavior, the item should have not been there, and the resident should not have tried to stop him. Saturday, they put him in an ambulance instead of their van and tied him down for 5.5 hours in the ER again at St. Joe Hospital Generations. He is there with no place to go because of his combative record at diaper change. He is only curious and bored and physically very strong. Pray for a home for Ira, I'm at the end of hope, it's been about 95 days of all bad news. I still believe in God, but not the medical community for a 66-year-old man with frontal temporal dementia.A girl at the end of strength and hope, Carol Miller. I've driven to Fort Wayne every day, except today, I'm done!!! 7-19-2012. He is in the hospital again for the fourth time, he has been kicked out of the three nursing homes, has frontal temporal dementia, for 10 years now and he is 66 years old. I know this social worker at the hospital is working on placement, and so is the nursing home that kicked him out, but he is so much worse. They are hoping his last ECT treatment , a shock treatment, calms him down it's number eleven. Carol July 19, 2012–note from Denise A specialist my nephew recommended. I'm so sorry. Frontal temporal dementia is a difficult disease and nursing homes are often not willing to take someone with this diagnosis. They can be difficult to redirect and manage– through no fault of their own. The ECT should calm him down, has it worked in the past? For how long? There is a neurologist at IU in Indy named Brandy Matthews who specializes in FTD. I'm sure she would be willing to talk with your doctor. She may have some other ideas. I wish I could help more. He will be, really difficult to place.
Page 47 of 62
July 19, 2012–response to Denise He has had 11 treatments now, and it really isn't making much difference yet. Today I didn't go to see him so all I know is he only slept an hour and a half after the treatment, and he is tied in a wheelchair. I'm very irritated, he doesn't feed himself anymore. He’s not speaking, and hasn't been able to, on and off for years. Could you send me the phone number for you and Dr. Brandy Matthews? Thank you. July 19, 2012 response from Denise to Carol and nephew Dallas Slabaugh. I am sorry to hear about Mr. Miller. These situations are difficult. Once a person becomes labeled difficult, placement is very hard. Facilities are careful of their liability; this does not help you or him at all. Is Mr. Miller at home or in the hospital now? Any facility that he is in hospital or nursing home must help with his placement if they aren't able to care for him any longer. You also have the right to refuse to bring him home. It might be best to have this conversation on the phone as it is difficult to get the details and provide answers by email. We answer the phone in the office from 8:30 to 4:00 daily. The Chicago contact center answers in the p.m. hours and they can be helpful as well. July 20, 2012–thoughts on Dad's condition to Ross and Yolanda. I appreciate you both taking care of your Dads details from a distance. I need you to know what is going on daily, and minute by minute, that is you do not know. Ross, you get to see Dad maybe two or three times a month, and Yolanda you can talk to the nurses and doctors and social workers like Karen. I called Karen this morning and I left a message like this so she will be informed. You two can take it from here. My husband is being tied down for at least 95% of the time, he does get 1 on 1 care. With that on his record he'll never get out of the hospital. The 1 on 1 is great if they could really make sure he is at least cared for and somewhat entertained. He needs something to hold in his hand instead of pulling his eyes, fingers and chewing on his hands for something to do. He needs plenty to drink, a cup with a lid and a straw with 7-Up or lemonade, offered often throughout the day. A waffle pillow under his bottom always seems to be forgotten. It is used so he doesn't get red and sore, his skin is very sensitive. They should be making sure he has shoes on when he is walked, and it is pretty seldom. There should be someone that could push him in his chair around the halls instead of just sitting there. It would be good if he could look out the window some of the time, that would be nice for him. They could keep the recliner up so his feet don't swell most of the time. He has no quality of life even though someone is sitting right there with him–looking at him. If he is too hard to handle, they get a security guard if necessary. I’m a very sad wife, not seeing hope for the future of Ira getting out of this hospital. Six days of this is too long to be tied down.
Page 48 of 62
Always someone by his side, I appreciate that but, what are they doing to help him improve his quality of life? I wish the nurses would think of him as their husband or father. What would they do for him if they were sitting right beside him? Mom July 22, 2012 from Ross Miller I called the jet-ski Amish man, they're going to test it and put it out for sale. I was looking at other jet skis around that year that look like $1,000 would be optimistic. I think he's going to start at $1,200 but would let it go at $800. The doctor called yesterday but I missed him, and I will probably not be on the ground during normal hours today. I told Karen and Yolanda that the only way to get a hold of me at a specific time is when I'm home. Today I will be flying until 1 AM. In reference to your email, nothing is going to be ideal or even close to ideal. Dad's quality of life, is it bad? Yes, but expecting the caregiver to do things exactly the way you would only drags you deeper into the daily battle. There is not a person you or Yolanda have talked to in the past three months that suggest that you get more involved in Dad's care. You have every right to be concerned but you can't be there insisting on details getting into almost daily emergencies with the wild range of emotions. Think of the things that you were so concerned about two months ago, despite all your time, energy, phone calls, emails, pain, and sorrow, Dad is no better off, don't burn yourself out! The situation is going to play itself out with or without you. Walking him, holding his hand, letting him hear a familiar voice are great. Unfortunately, there are no caregivers at any facility that you are going to be happy with. Your only other option is to bring him home and care for him exactly the way you want, but you would soon be exhausted, beat up, and probably having health problems of your own. You worry that he is bored and have nothing to keep him busy, you are thinking of his time as you would with the sound mind. If he had 20 things in front of him to play with would he still be biting his fingers and then pulling on them? Dad's behavior is not because he is bored, it's what seems logical to him at the time of his misfiring brain. The shoes, this is where the frustration started, and it continues still. In the big picture is it really imperative that he wears shoes? It is an awful situation, but it will get worse, it will not get better, if so, only momentarily, and on those days be happy. You say you don't see hope in the future, I suggest that is where you remain in your heart, do you continually set yourself up for disappointment. We will all continue to work on getting him to the best place we can. We can insist that he is cared for the best they can but, we have to accept that situation is only because of his brain and it's dying.
Page 49 of 62
There's no amount of care, or super doctor or wonderful facility that can change that. Ross July 23, 2012 to Yolanda What changes have you and the doctor made? Do you know what the doctor thinks it will take to get him ready for nursing home care for the rest of his life? Today he had number 13 or 14 of the ECT treatments, another two are scheduled for Wednesday and Friday? How many more is the doctor thinking? They still have him tied in a chair all the time, but for a few minutes they walk him at night. He didn't sleep at all, when he does get a good night sleep, he is so happy. The last time the doctor allowed me to bring in over-the-counter sleeping pills and it helped. But that was not allowed this fourth visit! He is still on 1 to 1 care, which they just watch and change his diapers, not much else. I wish you would change your choices and come with your family in August face to face. It would mean so much to have you here to share in this life I have been called to walk-through! Mom To Yolanda I ran into Dr. Schneider at the hospital tonight and asked him his plans for Ira. I was walking Dad, so I wasn't able to talk very long. He hit me in the breast today and swung at me with both fists. I was just taking his shoes off, they had to get the security guard in there. I got there at five for the nurses to give him a shot, I was able to hold his arm. They didn’t have to use the guard, but in fact he's more restless. He is more irritated today than ever; the treatment is not calming him down. He is still tied in a chair most of the day and on 1 to 1. How is the nursing home going to even consider him? I hope you understand why they think he is ready I don't, I don't want to go somewhere and get kicked out again, he is no better, probably worse. July 24, 2012 A couple from church took me tonight, and Sunday another couple from church took me, it is really nice for me not to have to drive and think about other things . Tonight, he was asleep when we got there, he hadn't slept for about 48 hours, he was in the recliner, he had been a terror all day. Tearing a recliner apart, pulling on people's clothes, lots of hallucinations, not eating well, only half his lunch, and no dinner because he is sleeping. Sleeping is good and healing, but today his knees did not hold him up, not able to walk, he looks so pitiful in the chair, I put his feet up, they were cold, and a blanket, and tried to put a waffle cushion under him. We left for dinner at Cracker Barrel, and when I came back, he was still sleeping so we went on home. Pray that the doctor will call the right places this time for Ira and me, we can’t handle a move again. He has been tied in a chair all the time and one-on-one care for 24 hours a day, what nursing home can handle that is beyond my understanding.
Page 50 of 62
July 27, 2012 from Yolanda I have talked to Karen and she called me. She informs me of her communications with the doctor. August 2, 2012–Marilyn Faulkner “Hi, I did some more checking things out today and sorry to say I do not have any good news. I think admitting Ira into a hospice setting would be manageable at this time. Due to Indiana State Board of health rules and regulations for the nursing homes I do not think you will find a nursing home that will take him. Even if his medications and treatments are managed by the hospice company. Rules for nursing homes do not allow them a lesser level of functioning for the sake of caregiving. I talked to Jenny at Parkview Hospice and she understands it, but she sounded perplexed. I think for that plan to work he will have to be admitted to a hospice house. That would be an excellent thing for him but the only ones I know about are Fort Wayne and Elkhart. Nothing in Lagrange or Kendallville. Talk to Jenny at hospice again and see if she will be able to make any headway towards the hospice house. I am so sorry we will not help you at Miller's Merry Manor. I do not agree with the state rules, but I have to abide by them anyway. I have to wonder what it would take to bring him home to your house and hire a caregiver to help you. Maybe you could devote a portion of the house to him and he would not have to be incontinent all over the entire house. Then when he is gone you could redo. Just an idea to think about. If the neurologist is right and he only has a few months left it might not be so bad. Not suggesting you do it but just think about it. I am out of ideas if the hospice house doesn't work but will keep thinking about it. Surely someone will come up with something to help you and Ira. August 3, 2012 from Martha Miller- Ira’s older sister I really think God has a plan for taking Ira so far away from home. There are things we cannot change, we have to back off and trust God to work things out, there were and still are places where I have to completely back away and get myself away then God can work. In my life and, also the life of others, there's things we don't know how to fix but God does. I trust them to fix things without my help and he does it right. Joe did not know me, people told me I had to give him up so God could work, that was horrible. I thought I had to be with them at the hospital, right or wrong, but I had a lot of struggles. Through all the deaths of my husbands I have learned a lot, God is in control, I for one do not have any desire to see Ira in those places. I have a great brother and that is how I am going to leave it, but not what is going on now. I am totally sold on it that God is in control, do not know why this happened, God does. It is nothing I can do for Ira now but pray. So, I see NO reason to visit him. I think it would make it worse for Ira. And I would love to see your grandchildren if we can work it out. God cares, Martha.
Page 51 of 62
August 5, 2012– (Letter to nursing home where he might be for 3 days,) He is and was a friendly man, the frontal temporal dementia has taken a lot away from him. Perception of what is, he high steps over different colors on the floor. He cannot hear well. To communicate use your hands and make sure you make eye contact. He cannot do anything in personal care, shaving, putting on deodorant, bathing, anytime he is touched he will push you away. Just keep re-approaching, slowly and persistently, you can get it done. He’s a strong man to hold. He has been held in a comfortable recliner for at least a month. His feet need to be up as much as possible. They get cold and swollen if down too much. He needs to be walked frequently he gets better as you continue the walk. Please have nurses on each side for walking. Be sure he has his glasses on. He likes to be pushed in the recliner, sometimes feet up and sometimes down and he walks with his feet down with the wheelchair . Ira likes many things to hold as he sits in the chair that he can't tear apart. He needs things to do he has always been a very busy man. He was a farmer and truck driver. He drinks a lot, but not much water, he likes lemonade, pop, and juice of all kinds. Sometimes he won't suck on the straw, just put a little liquid from the cup on his lips and he'll get the idea, but he likes to hold it. He loves to eat, but needs help all the time, let him taste a little on his lips lots of fluids with his meals. Usually after evening meal a good walk and he has a BM. He’ll grab his bottom and get all excited. Try to head to the closest bathroom. Changing his diaper, he hates it, he holds tightly to his pants, doesn't want to pull his pants down and he'll hit and kick. It is best to have someone to hold his arms and someone on his legs, and then someone to wash him well. He has sat so much on his bottom that he gets sores. Quickly put on a clean diaper and pants all at once if possible. You have to push him down, to sit on the toilet, his perception is gone on the toilet being a toilet. After putting this information together for his attendants, the nursing home cancelled his admission. August 5, 2012– “I'm going to believe that God is up to something good”- This is a great song”!When God doesn't answer the way we wanted him to, and when we want him to, we still can choose to believe he is it up to something good, that’s the way I'm going to believe. Friday at 4 PM we received approval for a nursing home in Scottsburg, Indiana over four hours one way from our home. He was supposed to be taken by ambulance Saturday morning, but they called and said the man that was supposed to move out did not move. This morning I decided to spend both visit times with Ira since I won’t be able to be there for three days, because the grandchildren are coming tomorrow morning. I won't be able to drive eight hours a day, too many hours visiting Ira, while they are here. On my way to the hospital about 11 AM Ross called and said the social worker called and said that the nursing home in Scottsburg canceled out. She called the other possibility in Lima, Ohio and they bowed out too. So, no place for my man again, our fourth try, approximately over 100 nursing homes contracted all saying no. Page 52 of 62
August 8 , Transported to WYATT WOODS NURSING HOME in Akron OH, about 4 hours away. August 26th, 2012-The hardest for me is not visiting. I can go only two or three times a week. I have always been there every day for him, but he is comfortable most of each day sitting in a Board chair. This helps him not to get more sores on his body from moving so much. I pray, that he is happy, and his heart is finding joy in his life as it is. The angels (nurses-caregivers) are working with him every day. Most of them seem to really love and care for him, which is so easy to do. He still gets the sparkle in his eyes when He sees me. He can't speak or respond most of the time. Sometimes he surprises me and says hi, he grunts with pleasure at our hugs, thank God. Thanks to everyone who's taking me to see him in the last few weeks, it helps so much and, it is a financial blessing too. The pressure is on for August 31st. All of Ira’s annuity money for retirement has to be spent out of all the accounts, and documented, it has been overwhelming for me to be ready for Medicaid. Prayers are appreciated for all the monies to be safe. I will be busy before the end of this month. Thanks Carol September 7, 2012–Carol to Friends I really don't know how to start, but my heart is so heavy I can't sleep so getting it out to my friends and family seems to help my heart. I went to visit him Friday with Ross, Monday and Thursday by myself, he is changing quickly. I don't know if it is the medicine or the disease, but yesterday I struggled to walk him by myself, he wouldn't totally wake up. His eyes were closed 95% of the time, I don't know if he opened his eyes enough to see me, he is hard to feed, I forced food in him and slowly he would chew, but not open his eyes. I am now praying that any day now will be his last, he keeps hanging in there. Am I going to be sad or glad when he is no longer here? No. I will simply be extremely relieved. I can’t describe how that relief will feel. When I got there, he was in his wheelchair sleeping. I could not wake him up even to shave him. I washed his face, and I could only change his diaper when he was lying in bed. He seems to feel safer laying down than standing in the bathroom being pushed around when they cleaned him up. He felt cold in my arms, pray for wisdom for the nurses and the doctors that are caring for him, it feels like he's leaving me, I know he is ready but I'm not. No advice needed unless you have walked in my shoes for at least 4 1/2 months, just pray!
Page 53 of 62
September 7, 2012–from Lee “When our situation comes to the point where we've done all we can, we have no choice but to find our hope in our redeemer. Lord Jesus, you are the redeemer of our lost and pitiful souls. It is you and you alone who is worthy to snatch us out of our dying state and set our feet upon you the rock of our souls. When we find any peace at all, it is in the presence of your indwelling spirit feeding us, nurturing us, and picking us up and carrying us on to the finish line. I pray for Carol and Ira. Because I know them and the love they have between them, it is not possible for me to pray for one and not the other. Their love and their unity has weathered storms together, strengthened them and brings them together as a couple and brings them closer to you because they love you and they trust you. At this time Lord, let them both feel your strong arms of compassion about them in your healing hands of mercy over them. I'm thankful Lord for peace for Ira. I trust during the seemingly unawaken times for Ira that you Lord, are communicating with his soul. I trust you Lord, that his spirit is experiencing peace only you can provide. Help Ira to beware of Carol's presence. I pray that he will continue to feel her love when she is present and that his heart will be ever mindful of her and compassion for him in her absence. I pray for the preparation of Carol’s heart for the days to come. You have brought them, Lord, to the threshold of a new chapter in their lives that requires the gentleness of your spirit which is ever present with them. Help them both feeling confident in your awesome grace and mercy. Give Carol strength and courage to do what she feels needs to be done day by day. Protect her as she travels. I pray that every day a new and refreshing portion of your wondrous kindness will awaken her every morning with knowledge it is another day you have made and give her peace to rejoice and be glad in them. Thank you, Lord, for providing a place for Ira. It's been a long struggle. In the light of eternity, it will have been worth it all. Just know we have done as you asked and given to each other as you arranged for our marriage together. We were in love, putting the other above ourself. I lift them both to the throne of grace and mercy in the matchless name of Jesus. We continue to pray and love you both”. Lee
Page 54 of 62
September 10, 2012 to Yolanda It's been over a month since I have heard from you, I know I raised you to walk through life on your own, but it's tough to feel you have no interest in your Dad. There is so much I would like to talk to you about like not selling your house, no equity, the moving of your children again, living your life with the children being priority, on your own. If Steve is no good, then raise them to live their life completely centered on shining for Jesus in all they do and say. You are they're example. Seeing the Bible alive and well in your life and Steve’s, and mine! I love you so much I just don't know how to love you and care for you and your children from Florida, it is such a long distance. September 28, 2012 - to Yolanda It always makes me so happy to see you sent an email. Dad is leaving me; they have taken him off some of his medicine about five days ago. They took off the meds that made him sleepy, but he is still very sleepy. Hopefully, it will get out of his system soon. When I got there yesterday, he was in his wheelchair, but the aid was feeding him, he ate about half of his meal. I took over and he soon fell asleep. I had to push food in his mouth as I have done the last three or four visits. We pushed him into his room, changed him on his bed, no fighting just grunting when we rolled him over. We covered him up and he started snoring, with his mouth open, and arms crossed over his chest. It tears my heart out when I see him like that, he looks like he's already in the casket! He looks like a really old man. He lays there and just babbles. I feel I am now living in his world; it is sad he is no longer able to live in mine. Life can be so fragile. Ira used to say, “don’t take anything for granted”. Like our loss on the farm that was just not expected, but that’s another story. After about a half hour, he started stirring so I sat him up, he doesn't have the strength to help put his shoes on. I walked him out of his room two doors down with the aids help, and he was really breathing heavy so we stood still, we let him rest a little and then on about the same length of space, set him in his chair. His heart was really going fast. They are not walking him, there is no doubt in my mind, he is getting weaker and his feet were swollen. I washed them in the basin and put lotion on them before I left. I also brought him his third pair of glasses, the other two pairs have been lost for three weeks. He been without glasses for that period of time. We walked him back to his chair in the dining room. He was alert, I put his glasses on him and put food in front of him. The flat screen TV was in front of him also. I leaned his chair back so he could focus on Bonanza, he seemed to be watching it.
Page 55 of 62
This is tearing me up. I kissed him all over his face and hugged him and he finally hugged me back and focused on me. We left at about four, we arrived there at one. I felt better because I was able to allow him to walk, and he responded to me a little. Oct 3, 2012 He is leaving for heaven soon. This nasty disease has taken his mind away. His brain has nothing left but holes like you see in a slice of swiss cheese. I have seen a brain with dementia in pictures. Short circuits in there continue to destroy my husband’s amazing brain. I was there for his birthday, and for the first time I don't think he knew I was there. His eyes had a film on them and looked almost pasted shut. Hoping the trip from earth to glory will be relatively peaceful for him. He was not responsive. I prayed for him to be peaceful, and comfortable, as he passed on to the next home prepared for him, but I still want him at our home. A crying wife, Carol Miller. October 5,2012 To Ross He hasn't eaten all day or drank anything, the nurse said he doesn't look good, like he doesn't feel good, I don't think I can make it through this! I don’t want him to suffer. It is tearing my heart out to see him this way after 47 years of marriage. I just want him to be at peace. Mom October 5, 2012 from Ross It's sad to hear, but all we can do is pray he goes comfortably. I will call you tomorrow, not getting in until late tonight. Be strong it's all in God’s hands, we are just along for the ride. Ross October 6, 2012–probably the last prayer request for Ira He is deteriorating fast, no response to anyone or any food or water today. I tried to give him some water, it was not the right thing to do at this point. After researching the internet, I found scientific evidence reveals death by dehydration is a very compassionate and comfortable way to die. When hydrating by a feeding tube or IV it may prolong the process of dying. It can even make it more uncomfortable by filling the body with fluids which can gather in the throat and lungs. The doctor told me he would not starve to death if he can no longer swallow. I chose to not have a feeding tube. The doctor agreed that nature would be allowed to take its course. He would not have much discomfort and he would not feel he was being denied food. I don't know if I can make it through this journey, it's all so fast, his nose and lips were so cold.
Page 56 of 62
October 6, 2012 -from Lee “My dear friend, Ira is standing in the wings of heaven. His new garment will follow up on his shoulders and he will be covered with the holiness of Jesus. To think that he will be ushered in by the very song of Heaven that no man has heard. Can we find it our hearts to rejoice with him? I hope you can my friend. It's been a long journey. During your years together and especially these last months it seemed you had more than you could carry. There is such beauty to arise from life from devastating ashes”. The Ira who you loved continues yet, for just a little while, in this deteriorating clay shell will not die for Matthew 22:32 said he is not the God of the dead but of the living. I believe these tried out, worn-out, ragged old shells we live in simply shutdown and soon Ira will know what it is to step away into everlasting peace and perfection. I envy him, Carol. I truly am in the air right now. You know, we live in our flesh our whole lifetime, however long that may be. We have only one destiny; to one day quit functioning, and to be laying down and return to the earth. Ira’s flesh will simply be laid down, in his life a step away in the beauty of holiness! Wow! I can get excited about that. Death comes suddenly, unexpectedly. but you know anytime now, Ira will rise up in the likeness of Christ. We shall be like him for we shall see him as he is. I'm sure your heart is prepared even though the flesh wants to hang on. I'm sure you will let us know when Ira ceases to last. Ira passed away on Monday October 8,2012. I am feeling all kinds of emotions right now, but I am relieved for him. They removed his brain, and it was sent to Harvard Resource Center to help find a cure of Alzheimer’s. The Funeral Service was Saturday October 12 at New Life Fellowship in Topeka, Indiana. A few memories after his death: October 28, 2012–to Yolanda and Ross, I want to send this on to you both. I just got off the phone with Dora, I had asked her and Martha about birth dates of Ira’s parents, the reason for their death, and grandparents, and all his brothers and sisters’ birthdates and health at present. They both have told me, after the funeral, ask for help in any way, so I thought that would be information they could help me with brain donation papers. Well I didn't hear from them for a week, so I called and left a message at each of their homes. Dora called, she was concerned about giving that information out and that I should not call Martha. She started going on about how mad Martha is, I cut her off, and said I don't want to hear about it!
Page 57 of 62
Dora also stated that several of his cousins died from dementia, and that Ira took pills to stay awake when he was trucking and the other man did that too, and they seem to be telling me that was why he died, I'm sick of it, that pretty well did me in, I don't get it! Mom October 28, 2012 from Martha Miller Ira’s Sister Why? Can't you listen-to what we want? Is this the life that Ira had? You do not listen! I do not want my name on that report. None of us do! October 28, 2012-Carol to Dora I will not be involved in any conflicts with anyone, especially the family of the love of my life. So please do not let me know of any family feud, I will not participate. Just so you know, don’t have any fear that any information is getting out. There are no names on anything, just relax and enjoy your life in peace. November 29, 2012–from Carol to attorney “Apparently, Wyatt Woods health center in Akron, Ohio has not sent the charges for the two months to Donna, but they said they will fax it tomorrow first thing. I will be on them. I've got bills for $5,569 I had paid in September and also have outstanding bills for $41,346.02, that's how much I have already spent, besides, everything you already have that I have sent”. As a widow am I to have anything left? I don't understand why I must pay out all these medical costs way above his annuity money. Struggling, Carol Miller. November 29, 2012–from the attorney Hartman Since he was in and out of so many facilities, Donna says she cannot confirm from the snapshot date. Bottom line, if she cannot verify the 31 days, then it's as if no snapshot date is established, and therefore no Medicaid coverage, the verification of 31 days it's what she says she is having an issue with. I told her there is no way you could control his medical situation and that he had to move to many different facilities because they could not take care of him or were not licensed to so. The fact he came from Indiana to Ohio for the sole purpose of medical care, without being a resident of Ohio for a long time is not helping. As I mentioned right after he died, since he is deceased, in my experience caseworkers usually denied Medicaid, or find a way they can deny coverage. Since their attitude seems to be they are trying to use Medicaid resources for the living only–I think that is why she keeps asking me why we are following through on the application and why she seems to be taking so long to go through all our paperwork.
Page 58 of 62
December 5, 2012– From the attorney Carol good news I have talked to Donna at DF CS–she informed me this morning that Medicaid has been approved for Ira starting from September 1 until the date of his death Oct 8 –any bills that were services rendered–after –September 1, 2012 should be covered by Medicaid– However any bills rendered before September 1 are your personal responsibility. Please be careful when you're paying bills to verify the date of the bills and the dates of the services being rendered. You will not get a refund if you pay for services that Medicaid does cover. Medicaid does not give refunds. We should be getting an approval letter soon to show that you can show the service providers that issued services after September 1 to contact Medicaid to get paid. December 19, 2012–Dear Wyatt Woods staff, I want to share some of Ira’s clothes with the residents at your care center. The two months that Ira spent there were the hardest in both of our lives, but the end result is great for Ira because he left there and went directly into heaven and God's presence. I'm left here behind, and I am at peace because the love of my life is finally completely taken care of and he’s the happiest he has ever been in his whole life, and therefore when he's happy, I'm a happy girl. Thank you to everyone who was involved with his care, I know it was tough many times. I will be sending all his clothes so you can use them for the residents there that do not have much to wear. A brief survey of admissions and discharges during Ira’s journey to heaven. Parkview Noble Hospital, admitted April 13, 2012, discharged April 14, 2012.p Saint Joe Hospital for April 14, 2012. Discharged April 24 Admitted April 24 to Miller’s Merry Manor, discharged May 8 Admitted May 8, 2012, St. Joe Hospital, discharged June 2, 2012. Admitted to Park view nursing Center in Edgerton Ohio June 2, 2012, discharged June 9, 2012. Admitted June 9, 2012 to St. Joe hospital in Fort Wayne again, discharged July 5, 2012. Admitted to Summit City nursing home in Fort Wayne admitted July 5, discharged July 14, Re admitted to Summit City July 14, discharged July 14
Page 59 of 62
Admitted again to St. Joe hospital July 14, 2012 discharged August 8, 2012. Admitted August 8 to Wyatt Woods Nursing Center in Akron Ohio Ira passed away October 8, 2012 at Wyatt Woods Nursing Center in Akron Ohio
You either get better or you get bitter. It’s simple, take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.
Page 60 of 62
Below is my basic support system, it does not include Jesus and many others who were with me through this difficult journey with Ira. So many friends and family took me back and forth to Fort Wayne and several different locations in Ohio. I especially thank Norma my sister who devoted so many hours driving me to multiple locations.
Yolanda
Lorena
Ross
Norma
Page 61 of 62
Page 62 of 62