CARING FOR A LOVED ONE
WITH CHRONIC ILLNESS
Maya has asked me to write this post based on my experience caring for my husband Bernie who passed away at age 58 in February, 2007. Bernie was diagnosed with secondary progressive multiple sclerosis in 1999. Multiple sclerosis (MS) is a progressive disease of the central nervous system that is sometimes called “the mystery disease” because there is no known cause. It is not even known if MS is one disease or several different diseases, but it is classified as an autoimmune disease. What is known is that the myelin sheath that surrounds the nerves is damaged. As the disease progresses, so does disability.
Although I suspected something was wrong at least a year before Bernie decided to seek medical attention, he was in denial of many of the symptoms which were already apparent to me. The most obvious symptom was his frequent loss of balance that he would attribute to a “bum knee”.
When a family member is living with a chronic illness it impacts everyone in the family. This impact can be minimal or severe and everything in between. It can be emotional, financial, social and physical. These factors are different for every family member. For me the most difficult thing was watching this disease take everything from my husband. It totally stripped him of all quality of life and, at the end, he could not even voluntarily move a muscle below the neck. It was an eight year spiral toward total disability and death; it was very hard to watch.
Shortly after Bernie was diagnosed, I joined a group for family members of newly diagnosed patients run by the National MS Society. I suggested to Bernie that he join a group for newly diagnosed patients, but he refused. He felt that “groups or therapy” were not for him. I didn't push this because he was not someone who could be convinced to do something he didn't want to do. Interestingly, when I came home after the first meeting he wanted to know what I talked about. I told him it was all about me and that if he had any curiosity about what a support group does he should try one. He never brought it up again. A few months later I joined another support group run by the MS Society which I am still involved with. This group, as well as my daughters and close friends, helped me through very trying times. Without these supports I’m not sure I would have come through so well. Honestly, although support from family and friends is profoundly important, I still felt that no one outside of the support group truly comprehended the stresses in my life. I often say “my support group saved my life.”
Depression, sadness, and anxiety also impacted my life. I didn't realize it until I was watching TV one evening. I knew it was something I would have normally found hilarious, but I didn't laugh, chuckle or even smile. The next day I called my doctor, made an appointment, and immediately started taking an antidepressant. A month later I definitely started feeling like myself again. Just like the commercial, I felt as if the dark cloud that was hanging over my head moved away. There were still times that it was just so heartbreaking and overwhelming that I would have a good cry. However, I didn’t have that constant lump in my throat and after I let it out I would feel better. We were both depressed. Bernie refused to take antidepressants, insisting it wouldn't help him. This made me angry - how could he know if he didn't try?
When Bernie was healthy he could be an angry person. After he became ill I told him that if he was angry he would have to find some way to cope other than taking it out on me or I would leave him. It was that simple for me. I told him I had every intention of sticking with him no matter how bad things got because I loved him. I told him he had the right to be angry, anxious, scared and frustrated. However, I wouldn't tolerate constant, consistent anger or emotional abuse. Sometimes he would be nasty and when I had enough I just had to give him a look or a sharp comment about his behavior and I would walk away. Shortly afterwards I would get an apology and it would be over. People would ask me “aren’t you angry about this disease or what is happening?” My answer was always “no”. I had tremendous sadness, but it did not make me angry. I did get angry at people who treated Bernie badly and, unfortunately, that did happen.
The social impact of chronic illness can be devastating for the patient as well as their family members. Bernie had to retire in 2002. As his disease progressed, he began to cut himself off from the outside world. As it became more difficult for him to walk, he was increasingly reluctant to leave the house. He fought using a cane, then the walker, and finally a wheelchair. I understood how hard this was for him, but it was also difficult for me. When I had to get him somewhere and he wouldn’t use a wheelchair he would lean on me (he was 6’2” and I’m 5”5”). When we went out to dinner with friends we always tried to go early before it got crowded and tried to get a table close to the entrance. One evening we went out to a restaurant and he had trouble walking out. When we got home he told me he was “done”; that he would no longer go out anywhere - not to dinner, not to a movie, not to visit friends...nowhere. I was stunned. I was also angry and informed him that I was not going to stop having a social life because he had made this decision.
It was as if I had two lives - my life at home with Bernie and my other life without him. I began going out without him, but still invited friends to our home. I would make dinner until he had difficulty using eating utensils. Then he refused to eat with anyone other than with me or our daughters. He withdrew even more and would just sit in front of the TV from the time he woke up until he went to sleep. Bernie was a brilliant man who used to read the New York Times everyday and did the crossword puzzle in 10 minutes. He had no cognitive problems, but as I said earlier, he did suffer from severe depression.
We were fortunate that Bernie’s disease did not have a huge financial impact on us. We had excellent health coverage, good jobs, and good pensions. We had always lived within our means and therefore had no debt. However, people who are not as fortunate as we were can be devastated by the financial impact of illness. I don’t know what we would have done if he had not been able to retire with a pension and social security disability. When it became too hard for me to work and care for him I was also able to retire with a pension and retain our health insurance.
I've been asked many times where I get my strength and I honestly don’t know. It isn't from religion or faith, because I am not a believer. It may be from my upbringing. My parents and grandparents were all incredibly strong people. My mother became disabled after suffering a cerebral aneurysm at age 48. My father cared for her with love until she passed away at age 65. I was very close to my dad; he was the best man I ever knew and a wonderful role model.
When Bernie became totally dependent on me for everything it did change our relationship. In some ways it actually improved our relationship because we both realized we had to be more sensitive to each other. We did talk about this, and when either of us became frustrated, we learned to take a step back, take a deep breath and discus the issue before lashing out. It wasn’t perfect, we both had our moments, but it worked. We had dinner together almost every night, continued to enjoy each others company and were able to make each other laugh right up until the end. Even though Bernie’s illness was very hard on me, I can look back on it now with no guilt and no regrets.
Maya asked if there was one message I could send to all the medical professionals in the world, what would it be? Please listen to your patients and their loved ones. Don’t dismiss their needs especially when it is about their quality of life or physical pain.
I'm proud to say that Sue Diamond is part of my family and one of the strongest women I know. Sue, thank you for opening your heart to us and for having the courage to tell your story. Bernie was so lucky to have you.
All my love,