I am a caregiver of someone with MS

By Kent Pollard

I think that part and parcel of coming to terms with becoming a caregiver, is acknowledging that there is going to be change, change that will almost always be difficult at the start. Change that we have to accommodate and embrace if we are going to have the best life we are capable of having.

My wife, Victoria was diagnosed with MS on October 5th of 1998, three days after I started a new job. At the time, caregiving didn’t even enter into my experience. We were a couple and there were things that we did for each other, none of them out of the ordinary. For the first 4 or 5 years after the diagnosis, caregiving was a minor, and completely unrecognized, part of my life. Victoria experienced unusual fatigue, and we worked through some initial anger and bitterness toward the world, but she continued to work and our lives were, or at least, my life was, not particularly disrupted. However, the disease state progressed, slowly but inexorably until about four years later when it, and the accompanying symptoms had become much more pronounced and began to creep into our day-to-day lives. Victoria was more tired than ever. She was slurring her words, and having trouble being understood, she had some word hunting difficulty. She lost the ability to control her left hand unless she focussed exclusively on what it was doing. She was forced to get a wheelchair to be able to work for even a few hours a day, and she no longer had the energy to do housework.

It was in the fall of 2002 that I finally realized the rest of our lives was going to be different because of M.S. As we drove home from work along Circle Drive in Saskatoon one day, commenting on the colours of the leaves by the river bank below, she asked me if I knew where the fingernail clippers were… for the third time in less than an hour, and using exactly the same words as the two previous times. At that moment, I understood that M.S. was taking things away from us. Things that we couldn’t ignore and might never get back; things that would force us to change how we do things. At that point, I finally understood that there were things about my life that were not typical; things that were not expected. Even then, I didn’t realize I was a caregiver, didn’t understand that my life was going to have to be, in some part, defined by my role as a caregiver. Didn’t know, but was about to find out.

Now, I have to confess here, that no-one on earth would ever accuse me of being a good housekeeper. Don’t mistake me, when I clean something, it is clean, but I don’t normally bother. It took quite a bit of prodding by Victoria to get me to do even basic chores, not because I didn’t want to, but because it simply never occurred to me. For the first few years of our marriage, that wasn’t a big deal. Victoria wanted the house clean and she kept it that way, Now, however, that had to change. I had to assume a greater role in the housework and it began to eat away at my free time. We stopped, or reduced, a lot of our former activities. We were taking an income hit, so we ate out less, we travelled less, and we became a little more introverted. Barely 5 years after she was diagnosed, Victoria had to stop working.

As she began to suffer more and more from fatigue, my role, and the demands on my time, increased dramatically. I had been, to some extent, a kept man. Victoria had always earned significantly more than I. But with her retirement that was changed, our family income dropped by over 40% over a couple of years, so we gave up our car a few months after she retired. We were incredibly fortunate that a dear friend provided us with an older van with a lift in it, but at about 3-4 kilometres per litre of gas, we can only use it for the essentials. I began bussing to and from work, which added nearly an hour to my total travel time. I began having to do a small shopping trip nearly every day after work so I could carry it on the bus, that was another half hour. We weren’t eating out and Victoria only rarely has the energy to cook, so I added about another hour a day preparing meals. Doing all, instead of some of the dishes, cleaning house where I had never done so in the past…. I’d added 3 or more hours to my weekday without even adding any actual “caregiving”

Despite not realizing that I had become a caregiver, I began to resent the role. Victoria still bathed, and dressed herself. She got her own plate at suppertime. She made her own tea and coffee. I didn’t have to help her in the bathroom. I didn’t have to help her into or out of bed. There’s a critical point there. I had already begun to resent being a caregiver and I wasn’t even doing anything, yet, that I would have called caregiving.

It took me a while to realize what a dangerous spot I was in. I was quietly seething internally about filling a role I didn’t even realize I had taken on. I imagine that was probably the most dangerous time in any care relationship. When the workload had begun to place me under stress and I didn’t even realize the workload is there. It could very easily have broken our marriage. My head was stuck in the sand while I wore myself out in a job I didn’t know I had. Fortunately, our marriage didn’t break.

I began to understand my role; to understand that the second half our lives would be different from the first. I began to understand that I am a caregiver and have been for years. That maybe we are all caregivers from the moment we are old enough to focus our attention on someone other than ourselves, until we leave this life behind.

I learned to look for opportunities and alternatives where previously there had been only obstacles. I decided that I had to preserve time for myself if I was going to last the course. To that end, I began making some fundamental changes in my life and attitude. I began leaving the house early and walking anywhere from a few blocks to several kilometres, letting the bus overtake me after time instead of taking the bus the whole distance each day. It gave me quiet time to contemplate and helped my health at the same time. I decided that a few weeds in the garden just might not hurt anybody. That maybe the grass would be just as happy if it went two weeks between cuttings, or three, or four. I won’t pretend those last couple of things didn’t bug a few people, but I can live with that. I applied for, and received, one of the pilot caregiver grants from the MS society and used it to build a small green space in a corner of our basement where I experiment with exotic flowers. I returned to the writing I had left behind in my youth, and found a new vigour in my efforts to get published.

Those efforts extended beyond myself. Victoria and I looked for ways to enhance our time together. We’ve arranged a small group of close friends to meet with us every Thursday evening. We might play cards, or board games, or, most often, simply chat for a couple of hours, discussing our week and the world around us.

Victoria began to take an increasingly active role within the M.S. Society and gradually I’ve joined her. Today we both sit on the board for the Saskatoon Chapter and it has become an important part of our lives, providing extra interaction with other people and a reason to leave the house once or twice a month.

We have a date night every Friday. Most often it is as simple as ordering in supper and watching a movie; occasionally as complex as a night out by ourselves or with another couple or group.

All of these activities have one thing in common. They have been deliberately chosen to support our health and well being, both physically and mentally. They’ve given us a feeling of purpose that extends outside of the comfortable little box that is the life of a disabled person and their spouse.

Today, M.S. has gone from being a dark little blot that we ignore to being an important, and, and sometimes positive, part of my life. I’ve learned to value some things that were not part of my world in the past. I’ve learned that I have an important role to play in the life of everyone around me. And I’ve learned that caregiving can be many different things.