I met Lynn through answering a personal ad in a local paper. We were in our thirties, divorced, had children, had successful careers, had our own homes, and had a solid Christian faith demonstrated by commitments within our church. Other than those general descriptions, we were different in character. I had prayed for God to pick out the ad for me to answer, and He chose the one from Lynn. Each time I questioned whether I should continue to pursue this relationship since we were so different, God said to stay with it. Therefore, I did. Even on our wedding day, I started down the aisle wondering if I was making a mistake. Lynn wrote a song he sang to me that day: “Don’t Fly Angel.” I think he knew how scared I was about getting married again.
Lynn was confident that our marriage would be successful. However, he saw life through rose-colored glasses and never acknowledged bumps in the road. I, on the other hand, saw the bumps and had to deal with them. I could see them coming and tried to plan for them before they hit, such as his health.
When we married, Lynn drank a six-pack a night and smoked a pack a day even though he knew his father died of complications of multiple sclerosis (MS) at the age of forty-nine. Those behaviors did not seem to make sense because he was a health nut otherwise. Lynn ate well, exercised, and drank plenty of water. He also refused to acknowledge any illness whatsoever if he acquired one. If he saw a doctor, he would only say when asked how he was, “If I was any better, I couldn’t stand myself.” The only exception to that rule was when he went for his annual cardiac visit to check the status of his mitral value. He feared needing a valve replacement, so he allowed me to go with him to those appointments.
Began to Suspect He Might Have MS
We were married in 1997. By 2002, I began to suspect Lynn was in trouble, health-wise. I asked him if he told his doctor about the symptoms he had and if the doctor had checked him for MS. He assured me the doctor confirmed he did not have MS. However, by 2006, the symptoms of MS were so pronounced I knew without a doubt MS was the diagnosis. He refused to consider the possibility. Then, one day, I caught him comparing finger movements between hands. One set of fingers was slower than the other. I told him that the doctor needed to check him for a possible disc problem since what I was seeing was abnormal. I did not mention MS because I knew he would refuse to go for an evaluation if I did.
Lynn had a cardiology appointment that week. I always went with him to those. His doctor asked after the appointment if he had any concerns he wanted to discuss, and I mentioned the MS symptoms. He immediately helped me get Lynn a neurology appointment for the next week. Lynn attended the appointment, completed testing, and was diagnosed with multiple sclerosis. It broke his heart because he saw himself in a wheelchair, wasting away, depressed like his father.
Though Lynn was a fighter, his condition rapidly progressed from independence to co-dependence to complete dependence within a couple of years. The transition was very difficult for all of us, especially Lynn, who was very proud. He did not want anyone, other than me or his son, doing his care. He wanted others to continue to see him as healthy and able-bodied. He would not let us feed him in the presence of others. Therefore, we never went out to eat. Even when the family came over, it took many years before he was comfortable being fed in their presence.
Lynn worked for Wyth when he was first diagnosed, but two months after he learned he had MS, his company notified him that they were eliminating his department within the next six months. He considered starting a drafting company, but the building market was almost non-existent. When trying to come up with another means of making money, his son suggested he try writing. He liked that idea and began working on his first book, Rising Tide.
Afraid to Be Alone
In 2010, Lynn fell when he was home alone and could not get up. Fortunately, he grabbed his cell phone as he fell and called me for help. However, I was three hours away at a conference. He refused to call EMS because he was naked and on his way to the shower when he fell. By the time I returned home, he was limp from lying in front of the heat duct, exhausted from trying to get up, dehydrated from the heat, and scared to death. After that day, he feared ever being alone again. As a consequence, I had to ask my employer if I could work from home until his mental status became better. Fortunately, she agreed to a temporary setup for me.
The temporary arrangement became more long-term. Over the next several years, I did a balancing act of doing my job and caring for Lynn 24/7. In addition, I cared for our home, cooked meals, and cared for myself. I was exhausted. Furthermore, I felt guilty about everything:
- Guilty, I could not give my employer the exceptional I had previously provided.
- Guilty, I could not give Lynn the attention he needed when he needed it.
- Guilty, I could not spend time with or help family and friends.
- Guilty, I could not get to church each week.
- Guilty: I could not keep my house clean or have things repaired.
I felt I wasn’t doing enough for anyone. I had to accept that I could only do essentials. Extras and doing my best could only happen if I had additional time and energy. I have always been someone who tried to excel at everything I did. Trying to change that behavior was torture for me and caused me a lot of depression and resentment. I tried not to blame Lynn; he could not help being sick, but I did blame MS.
Hired Help
I hired someone to help care for Lynn while I worked at home. They typed for him and helped with feeding him, giving him water, etc. I did his catheterizations, morning bowel care, showers, etc. until my employer said I had to come back onsite. I panicked when I received the notice to return because I had limited time to make it happen. I had a week to find someone and get back on site. Hiring a caregiver takes a long time. I was very fortunate to find someone as quickly as I did. She worked 9-10 hours daily (I lived an hour away from work). I taught her to do all of Lynn’s care, and though he was not happy that someone else had to do the “private” stuff, he accepted it, knowing that if he didn’t, I would lose my job. I was the only one working, so he had to accept it.
Physical Impact of Caregiving on Me
I continued to work and be his full-time caregiver after I got home from 6 pm until the following day at 8:00 am and all weekends until my retirement in 2018. Most nights, I had 5 hours of sleep. Some nights less. Lynn would not agree to our hiring more help because he felt we could not afford it financially. He was probably right, but physically, I was hurting badly. My scoliosis had gotten progressively worse. I developed fibromyalgia, a partially torn rotator cuff, a shoulder fracture of my right shoulder, and bursitis in both shoulders. I also have neuropathy in both feet, legs, and fingertips, as well as arthritis in all joints. I’m a mess. My attitude was terrible by then due to depression and caregiver burnout. I also suffered from a severe case of irritable bowel syndrome. My doctor told me if I didn’t start resting soon, I would have a heart attack or stroke. I didn’t have an option to stop caregiving, so I retired.
Though I kept our daytime caregiver, she was out a lot due to children’s illnesses. COVID occurred multiple times in her family of three children, and we could not have her present with potentially contagious germs; therefore, I was a full-time caregiver for many days. By this point in our relationship, I felt more like Lynn’s caregiver than his wife.
More Caregiver than Wife
We were only together as a couple during his dinner at night. He liked having dinner around 1 am (yeah, you read that right). We would watch a Hallmark movie while I fed him and did his evening care, which took an hour. It was about a two-hour stretch of time I spent doing things for him continuously. We shared more during that time than any other time during our day.
Primary Healthcare Provider
Over the 15 years I was Lynn’s caregiver, I came to know everything about him. I knew what every change in his skin color, breathing pattern or sound, blood pressure change, heart rhythm, bowel or urine change, or mental status indicated. Based on what his body told me, I would call his doctors and report the changes I saw, how often they occurred, and how they matched what had happened before in similar situations. Then, I would suggest what I thought might be happening and what had worked in that situation. That would start our discussion on what they felt might be the problem. Sometimes, I would have to bring him in to see him, but often, they would take my word for what I described. When I could, I would send a chart of vital signs or a picture to back up my claim. Evidence always helped. I always tried to treat him at home first to avoid exposure to germs in the hospital (hospitals are nasty places full of germs patients can get from one another.) Once the doctors learn to trust your judgment, they often will work with you. Learn to talk their talk, making you more credible to them.
