I am a firm believer in the right of individuals to make decisions about things that effect them. I tried as a parent to give my children the right to choose when it was possible and they were not going to potentially suffer harm if they made the wrong decision. “It is likely to rain, which coat would you like to wear?” There were a few soakings before they appreciated that style does not always win over substance but a hot shower and warm meal meant no harm was done.
I have tried to apply the same principle to my husband as we have travelled along his dementia journey. He invariably asks me to make the decision for him but I do sometimes try to maintain decision making powers by suggesting a limited list to choose from. “Shall we have coffee in x or y?” “Shall we walk further as the weather is nice?” “Would you like to sit in the garden to drink that?”
Of course he makes a lot of decisions every day without ever thinking that they are decisions. When he will get up in the morning; when he will have his shave; when he will feed the cat; when he will watch the television.
But it struck me the other day that this fight to maintain his right to choose has slowly diminished mine, as his carer. I can only have a lie in if he does. I can only have an early night if he does. I can only have a shower if he is settled in an activity. I can only go to the gym if he does. I can only go anywhere on my own if I have a carer in; it cannot be spontaneous, cannot be on a whim.
We have an added complication if he doesn’t want what I have set up. What happens to his right to choose then? We have our two rights to choose in direct competition. An example might help. I used to go out socially one evening a week for two hours to meet friends, have coffee and a natter. I had to start having someone to sit with my husband while I did that. He didn’t like the first person, or the second, or the third. He was clearly upset all day about the prospect of them arriving regardless of how much preparation I put into the two hours. I stopped attending the group. His right to choose trumped mine.
Another example, we both go to the gym one morning a week. It is a special health related session with additional staffing so they look after my husband on the static bike while I engage in some running. I can usually do my run, shower and change in time for him to finish. I enjoy the exercise, the chance to push myself and it is an integral part of my mental health plan. Some weeks though, he doesn’t want to go, dawdles, delays and we arrive too late for me to fit in my run or sometimes don’t arrive at all. He has the right to choose not to go but what about my right to exercise?
We used to take our younger granddaughter out one afternoon a week and collect the older one from school on our way back to the minder. Timing is everything because he does not wait willingly or easily but when he decides he cannot rush, can only do steps very slowly that day, has to have his coat done up but cannot do it himself, we are late arriving at the school. This was very close a couple of times and seriously late on another occasion. We have stopped collecting our granddaughter from school. I am not sure he has actually decided that, I am not sure his actions were totally decisions made to cause that result but I am sure that I have lost an opportunity to spend time with our granddaughter. My right to choose has been taken away.
But at the end of the day I do have some rights to choose and I am exercising those and the smaller rights I have talked about here fit within these larger choices. I have chosen to give up paid employment to care for him full-time. I could have put him into paid for day care, he might not be as active as he is both cognitively and physically, but I could have decided to do that. I need not have engaged in the diet and exercise regime that occupies so much of our time. I could have ignored the touted benefits and opted for an easier life. It is the knowledge that I have made these bigger decisions that helps me through the smaller losses.
Can the system help? Can society help? I suspect not. I am being abused by his Alzheimer’s. I am being abused by my love for this man. I am being abused by what that love means I believe I must do. Like so many other family carers.