Caregiver’s Perspective

LUKE LIPTAK: CAREGIVER’S PERSPECTIVE

*The views expressed in the following stories belong to the content creators and are not the expressed opinions of the LFA, GOC, it’s affiliates, or employees.

My story about being a lupus caretaker is also the story about my realization of the reality in which I exist. Many years ago, I was employed at a local hardware store. One day as I walked into work my eyes gazed upon the most beautiful girl I had ever seen. She was standing at the customer service desk, her long blond hair gently blowing in the wind from a nearby fan. Although nervous and intimidated to talk, I approached her and we became friends. I didn’t know it back then, but my life was about to change forever.

Like any other young couple in love, we were inseparable. She was all the same things I was; athletic, fun, a party animal. We would hike, camp, ride bikes, and spend time on adventures; our lives were going great! But as time went on our adventures became smaller and less active. She began complaining of soreness and muscle pain. Her joints began to bother her, and she was getting tired more often. She decided to see a doctor who identified signs of arthritis. Shortly after that she developed a blood clot, which led to her being diagnosed with lupus. As much as this was a shock and surprise to her, it also was for me. Both her and I had never heard of lupus. We did not understand what it was or what caused it. I personally had no experience with any type of disease in my life at this point and thought it would just go away, like the common cold. But it didn’t go away. We were in the hospital every month and our lives were turned upside down. As our frustration became unbearable, one of the most important events in our lupus journey was the discovery of The Lupus Foundation of America. Their support group was eye opening in so many ways. Not only did I learn what lupus was, this is where I truly realized that I would have to be a caretaker. At first, being a caretaker was something new and exciting. I embraced this new life we had together and moved forward with a stiff upper lip. As her caretaker I made sure she took her medicine, ate healthy meals, exercised, and had enough sleep. When the lupus would flare up, I took care of getting her to the hospital, and comforted her in times of pain. When she had a good day, we would take full advantage of her health and go on adventures again. But when the bad days came, we made sure to rest and recover. Thankfully her lupus went into a mild remission and was under control through medication. Eventually we got married and had two kids, but once again lupus reared its ugly head, becom-

"I am so grateful for my husband and caregiver. He takes the time to have “medical” conversations with me, encourages me to take care of myself so I can avoid flares, gives me my Benlysta injection each week, and takes over family responsibilities when I “just can’t.” He is not only my caregiver, but my greatest champion. I am at my best because of him." - Adrienne, lupus warrior

ing worse than before. Early on in our battle with lupus I could have handled it without a problem. But now, while raising two young children, working full-time and going through issues of my own, the caretaker in me was deteriorating. During that short time of remission, I became complacent, prideful, and selfish. Now that the lupus was back I thought to myself, “It’s not fair! She doesn’t deserve this! Why won’t this lupus go away? I need to live my own life” We were in a dark place and being a caretaker was becoming more of a chore that I was tired of doing.

As lupus tightened its deadly grip, darkness and depression clouded our world. Even though we had come so far in our journey, conquering flare after flare, we were at our breaking point. We still did not understand why this was happening or how this could be. And just when it seemed like lupus was winning the battle something miraculous happened. This miracle did not come in the form of medicine or even a cure, but in a relationship with God. It was at this time our darkness was turned into light and our eyes were opened to the truth.

We now understood why she has lupus. We now understood how this happened. It all made perfect sense. We discovered that the curse of lupus is part of our existence. In fact, our entire existence is under a curse. Pain, disease, sickness, suffering, and ultimately death are all a result of sin. For so many years as a lupus caretaker I did a wonderful job at taking care of my wife’s physical problems but neglected her spiritual problems.

"My sister was diagnosed with lupus when I was very young and growing up and helping with the role of caregiver was a hard task, but I knew I had to stay strong for my sister." - Lillian, caregiver

Although lupus is real and terrible, it is temporary. Now as her caretaker, I still provide her with physical support, but I also remind her that even though the curse of lupus is with her every day, God, the ultimate caretaker, provides her with everything she needs. For He has conquered lupus, pain, sickness, and even death. Being a lupus caretaker is one of the best things that has ever happened to me. Because of my first-hand experience with this disease, I have now become aware of the reality in which I exist and the One who can save me from it.

TINA AND DAVE: CAREGIVER’S PERSPECTIVE

Who is Taking Care of Who?

Living with a chronic illness is not always awful. Sometimes it’s just normal. Sometimes you feel great. Sometimes it’s painful, scary, or exhausting. So, when there are two of you in the house living with similar illnesses, then who is taking care of who??

I have lupus SLE and have for 10 years. I am lucky because 80% of the time the meds I take work to keep me moving, working, happy, and healthy. However, when my flares start- always out of the blue- they really hit. Myocarditis. Cerebritis. Pericarditis. Chilblains. To name a few. Then hospital, recovery, time off work. Yuck! See, I want to save the world and when I can’t it really irks me. So, when that happens Dave, my husband is the one that keeps me calm, rested, and lets me know it’s ok if I take off my cape once in a while. Whether I am in a flare or not, he always tells me to slow down, relax more, and his famous “you are not responsible for everything and everyone.” He takes care of me in many subtle ways. He does the most important things.

He hangs out with me, takes care of me, (oh and I can’t forget he does the dishes and laundry by choice, got to love that!), and never makes me feel bad if we have to miss something we wanted to go to. He’ll say, “who cares, there’s always another thing.” He keeps it in perspective, and I appreciate that. I can start to go down a rabbit hole of feeling guilty for holding him back from going out, but he doesn’t let me go there.

By the way, my husband Dave, who is my very best caretaker, has Ankylosing Spondylitis, which is a painful chronic form of arthritis that causes widespread inflammation and causes your bones to fuse, which can greatly limit mobility in your spine, hips, shoulders, etc. It is very painful. He’s had double knee replacements, both shoulder bones un-fused with surgery, a large heart aneurysm fixed (that was the scariest!), cancer twice, and someday you can ask me about the caterpillar that almost did him in. Truly. (Way too long and crazy of a story for this article.)

However, if you have ever met my husband, unless you know his

story, you wouldn’t guess any of it. He is the best example of being his own best/and worst caregiver. He doesn’t let anything stop him. He works in pain every day and doesn’t mind. He smiles and has a joke or a funny comment for every situation. But he also doesn’t refill his pills, make his doctor’s appointments, get his blood work done, etc. So that’s my job and I don’t mind.

When Suzanne asked me to ask Dave to write an article about his view of taking care of someone with a chronic illness, I said, “I’m not sure who really takes care of who?!” She said, “write that!”

Bottom line, we don’t expect the other to “cater to us.” Honestly

some days we are not sure who is more tired or who needs it the most. So, we both take care of each other and ourselves, and neither of us sits there looking at the other for sympathy. Now empathy, that’s different. We have that in spades for each other. I can literally “feel his pain” sometimes as a spouse with a chronic illness, and I know that he can feel mine. We help each other, but we don’t enable each other to stay down for long. We push each other back up when it’s time. When one of us is down health-wise, the other takes the wheel without another thought. Then we do everything we can to get them back to copiloting the wheel with us.

Speaking of wheels, we have quads we love to ride in the woods. We love being in the lake on our jet skis, jumping off the pontoon, and at our family’s cabin with friends. Much of our “caretaking” is “taking care” to have fun! We live life to the fullest!

Do you know who your very best/ worst caretaker is? You. How would you rate yourself as your own caretaker today if you had to score yourself? Honestly, I’d say I’m a 2/10. Which is a big old flunk. I always take care of myself last. I’ll bet you do too.

I am blessed to have some help, however, I’m going to work to greatly improve my self-care this year.

For those out there without chronic illnesses or those who don’t understand your significant other with lupus, try empathy when they are tired beyond belief, have unbearable pain, want to stay home instead of going to a party, are extra nervous about covid as an immune-compromised person. Try empathy.

How do you learn empathy? Read about lupus. Really read. Understand everything about their disease. You love them. You both deserve to fully understand the other. I challenge those significant others who are reading this (or hand this to them if they are not). Go to https://www.lupusgreaterohio.org/. You simply cannot feel or truly understand what your loved one feels without knowing. #kNOwLupus

"I feel very blessed to have a husband who always provides for my needs, especially when I am not feeling well." - Kathy, lupus warrior

"My friend Lucille had lupus. She was a charismatic lady who was full of life in spite of her challenges. When she had flares, she became a very needy person. Before my eyes, I would see an instant transition from wellness to illness. I eventually became her caregiver. Most recently I shared with Suzanne that it was a silent challenge. When it came between who would get lunch or dinner there was no question that her needs were filled first. I did work full time I do not think most people think about their caregiver. Still, I would not have had it any other way."

- Ann, caregiver

"When I think of my caregiver I realize that it takes a village to care for me. Although I look normal, my looks do not show the lupus challenges that I am confronted with on a daily basis. It starts in the early morning. My husband is my hero. It really takes a lot to get me going. His help allows me to have more time to do the things I love to do. My staff helps me move mountains daily: they are very supportive and conscious of my limited world. My family, I have exhausted through the years. The way they offer care and support is too plentiful to list. All these people who give of themselves so I can be myself. I say thank you. I am sorry for not giving you the gratitude you all deserve. I humble myself to ask for your forgiveness. I will never take your care for granted. Love to my village."