Caring for People Afflicted with Alzheimer’s at Home | Recreating “Home” in a Facility Fall 2014 | Kaitlin Davis | Dr. Benyamin Schwarz
Interview Summaries Conducted over the course of Summer and Fall 2014, so I could understand Alzheimer’s and its effect on the person with the disease, as well as the families who care for them. These vignettes help show how much work, dedication, and commitment goes into caring for a loved one with Alzheimer’s at home. Chuck — Wife: Anna Maria, a speech pathologist for over 20 years. — 2005 was when she started having problems at work, as well as health problems such as high cholesterol and diabetes. — 6 months later, she had more issues at work (argumentative with coworkers) and went on medical leave. It was decided that she would retire instead of going back to work. She ended up teaching at a
“Holding on to Home”
Senior Thesis - Alzheimer’s Care Unit While people prefer to live at home while they age and cope with Alzheimer’s or other forms of dementia, it’s evident that in late stages, they still require the use of a facility or constant, 24/7 nursing care, that their loved ones may not be able to provide. With this in mind, and from the information from my interviews, I designed a residential Alzheimer’s Care Unit that can accomodate those in various stages of the disease, while also providing them with a sense of “home” and comfort.
private school for a year. — Summer of 2007: got lost trying to go to her sister’s house, a route she had travelled many times. — Fall of 2007: Got an MRI. — February of 2008: Diagnosed with moderate Alzheimer’s — Hardest part for Chuck: “I can’t fix this”. — 2008: Chuck went to the Alzheimer’s Association and got fairly good help and resources, but it was not helpful for the day-to-day aspects of caring for his wife. — Found out about Memory Care Home Solutions, which was instrumental in making their home safe (locks on doors, silverware placement). — He made the conscious decision to care for Anna Maria at home because he thought that’s what she would’ve wanted. — 2009-2010 was okay, but Anna Maria became more argumentative. — Chuck learned to become very efficient with time and was also able to get some extra help from a woman from a nursing home. She came three days a week for four hours a day. — Anna Maria would always walk in a set, repetitive path from the dining area, to the kitchen, to the family room. — At the end of 2010, Chuck had Anna Maria participate in a study at SLU that had some positive findings, but not much. — Anna Maria’s health began to decline, and was wheelchair bound for the next year. — At the end of 2011, she was checked into a hospital for a week with a severe UTI. On the 4th/5th day of her stay, Chuck was informed that his wife needed to be put on hospice. — They did hospice at home and Chuck had a hard time getting Anna Maria’s family to come see her. — Anna Maria passed away in May 2011. — Chuck also explained that with 168 hours in a week, and only having help for 12 of those hours, it’s no wonder caregivers are stressed. — “Alzheimer’s sucks.”
Sandy — Cared for her husband with Alzheimer’s.
— The facility is organized into three distinct community “households”, each with its own living area, kitchen and dining area, and an outdoor courtyard. Residents also have safe access to outdoor areas around the perimeter of the facility. — Residents are encouraged to maintain their independence by continuing to follow their routines and activities, for as long as possible. — Care will be available, and will include necessary safety measures, and 24/7 supervision and medical care. — Each resident has their own private bedroom and accessible bathroom. They can also bring their own personal and familiar belongings if they wish. — Families and friends of residents are more than welcome to visit, interact and participate in activities.
— Husband was a mail carrier for several years when coworkers started to notice that something was wrong (he would forget routes). He sprained his ankle on the job and went to the doctor with Sandy, and that’s when the doctor noticed something else was wrong, besides the ankle. — Husband was diagnosed in 2009 with early onset Alzheimer’s at the age of 58, but Sandy thought he probably could have been diagnosed sooner. — Early onset patients tend to go downhill faster. — Her husband soon could not talk anymore or take care of his personal hygiene. He did not converse with Sandy and did not call her by name. — For the first two years, Sandy still worked while her husband stayed home with their dog. — In 2011, their dog passed away so Sandy began staying home full time. — She said the hardest thing was trying to get her husband in and out of the car. “It’s much harder for a woman to take care of a man than a man to take care of a woman.” — She joined a support group soon after that helped her immensely. — Also in 2011, her husband started going to adult day care for two to three days a week, and then eventually five days a week. — For Sandy, daycare for her husband was nice break as he went several days a week from 9am to 3pm. He was able to stay in daycare for two and half years, which helped out Sandy a lot, because she was the only one taking care of him. — When Sandy’s husband could no longer handle daycare, he stayed at home up until the last month. — In November of 2013, her husband got dehydrated and admitted to a hospital. Sandy was told that her husband should not go home. — They tried a nursing home around Thanksgiving, but it was not a good experience. She had a problem with the employee giving her husband sedative drugs when she specifically told them not to give them to him. — Within a month, he stopped eating and was having seizures. Sandy was told it was end stage and was told to contact hospice. — Her husband moved to a hospice on New Year’s Day, and passed away a few days later in early January. — Sandy met with Memory Care Home Solutions within the last year of her husband being home and said they were very helpful, courteous, and good about checking in every now and then, especially since she did not have any extra help. — “It’s amazing what you do because you have to.”
Tom — Married to his wife for 55 years. — Wife initially diagnosed with pancreatic cancer but survived because it was caught very early. — Something still seemed wrong so they went to a couple doctors, and even travelled to the Mayo Clinic where they found out the cancer had come back in her liver and she had Alzheimer’s. — Tom did not know what to do, so he contacted Memory Care Home Solutions and also took his wife to adult day care. She started going a few days a week and eventually got up to six days. — Tom had lots of help from his kids and also helped out Sandy with her husband. — Tom’s wife became dehydrated and was admitted to a hospital. She went back home for three more months, and then went back to the hospital where she needed more care that Tom realized he could not give her. — Tom’s wife passed July 8th, 2013. — Tom’s wife and Sandy’s husband ended up going to the same adult day care and were friends and enjoyed seeing each other. Tom and Sandy eventually met each other two year later, and after their spouses passed, they began seeing each other. They find that having been through the same situation, they have a lot in common and can relate to each other in that aspect.
Kathy & Butch — Cared for Butch’s aunt, Wilma in the late 1980s – not much information about Alzheimer’s was available at the time. — They saw Wilma once a week to 2 weeks before they knew she could not function safely at her own home. They also knew something was wrong, just were not sure what. — “She was overwhelmed all the time and could not remember simple things. Things were in strange places around the house and her checkbook was screwed up. She left the water running in the sink while out feeding birds. She was putting kitty litter in the cat’s food dish, instead of food. She wore the same dress all the time, did not have any underwear (probably had an accident and threw them all out). She had poor hygiene, weight loss, and got lost on familiar routes. She had weird food in the house and appeared to not be eating. One week, there were 50 pairs of shoes all over the house, and the next week, all of her shoes were gone”. — Information from neighbors after they moved Wilma to their house: “She would leave lights on in house all night, every night. She would also go to their houses and ask what time or day it was; would also show them photos and ask if they knew who was in them”. — Wilma was diagnosed with Alzheimer’s in March/April of 1990, after ruling everything else out. — Kathy and Butch had Wilma move in with them in April 1990 and lived with them until her death in January 1991. They never had her in a care unit because Butch promised his uncle that he would take care of her and wanted to. Kathy was an RN so they thought they could handle it. — Wilma did not attend an adult day care, because there were none available where they lived. — They also got Wilma a poodle dog that never left her side. She named it “Kitty”. — They were lucky Wilma forgot how to walk very early, because falls were a big concern in there house. And if she was able to leave the house, she might have gotten lost in the woods. — Day in the Life: “Wilma’s dementia progressed rapidly; within two weeks, she could no longer sign her name, play piano, or walk. She had a bed with a big headboard so we turned it with two sides against the wall, the headboard as a third side, and a large piece of wood as a fourth side so she was blocked in at night to keep her safe. We had to lift her under her arms and knees to bathe her and had a towel on her wheelchair for when we lifted her out. We heated the bathroom so she would not get too cold. We adapted her wheelchair with a wraparound plywood tray table so she could have her food at mealtime, and then various items the rest of the day to occupy her time - “play” things like colors, photos, etc. Lizzy (Kathy and Butch’s youngest daughter) would sit on the edge of the tray table and read to her. We had to adapt the foot pedal because she was short, so we put a block of wood there. We had to do a range of motion exercises to keep her muscles working. She would enjoy her dog, and looking out the window watching the birds and happenings in the woods. She liked listening to music - loved the Mitch Miller sing-a-long tapes. We had to adapt meals to make them more caloric, and gave her mostly finger food, until we had to start feeding her ourselves. Sometimes she would nap on the couch during the day. For sleeping, we adapted her clothing to t-shirts and sweatpants. I sewed a top and bottom together, split the back open and sewed velcro closures in for P.J.s, and split the tops of her shirts for ease in dressing. She was incontinent of both bowel and bladder, so we used reinforced Depends that needed several changes throughout the day. We tried to provide stimulation with photos, music, and her dog. We had a big clock, calendar, and thermometer so she could see some orienting things. She would string cheerios or sort buttons or roll yarn, sort poker chips, play with a deck of cards, etc. — They did everything for Wilma after her first 3-4 weeks at their house. There was no support system except for their family and two nursing assistants who would care for her so Kathy and Butch could get away. — Hardest part about caring for someone with Alzheimer’s was never knowing when it would end as well as the isolation, confinement, and social restriction for Kathy and Butch. It was a big commitment and could never leave home without someone there to care for Wilma. — Caring for Wilma now as opposed to in the late 80s/early 90s, how would it be different? “We know so much more – there is a huge network of support and education. More tools to work with – adaptive equipment, furniture and clothing to meet the changing needs of Alzheimer’s residents. Plus there are many new medicines to help. — Advice: It is a really big 24/7 commitment, so you need to be sure you go into it with eyes wide open and a wealth of knowledge about the person, disease process, and what is involved. You have to be capable of all the managing of diet and nutrition, bathing, grooming, toileting, range of motion, dressing, activities, etc, through all the changes that will happen, and know when something is wrong. It is important to support and try to maintain what abilities they have for as long as possible. It is also important to provide opportunities for them to feel/be successful. Be compassionate.
Acknowledgements
— Dr. Benyamin Schwarz - Professor at University of Missouri, Architectural Studies. Emphasizes in enviornment and aging, dementia special care units, and assisted living. — Lisa Baron - Founder of Memory Care Home Solutions in St. Louis. http://www.memorycarehs.org/ — Chuck, Sandy, Tom, Kathy and Butch - Interviewees — Cohen, U., & Weisman, G. (1991). Holding on to Home: Designing Environments for People with Dementia. Baltimore: Johns Hopkins University Press.