ALS forces you to make decisions; some easy, some hard, some normal like everyone else, some just plain strange and unique to having this disease. Decisions for me are much the same as decisions for everyone else on the macro scale; it's when you get down to specifics that they take on a whole new level of challenge and complexity. They fall into one of three categories; decisions driven by financial needs, decisions driven by lifestyle needs, and decisions driven by personal care needs. In most cases, however, it is a bit from column A, a bit from column B and a bit from column C.
Take for instance the decision about what to wear. That seems normal to all of us; we all make clothing choices every day. For me however, that decision is becoming complicated. As my arms weaken, I can see the time coming when I will no longer have the strength to easily put on my favoured blue jeans. One day will arrive when I cannot put them on at all. I have to make a number of decision around this, not just one; those decisions will be made in increments until there is no more to decide.
First, I will likely have to decide when I can no longer put in the energy to get into my jeans. I make this decision almost daily already, still deciding I can do it for now. When I can't, I have to decide if I am going to switch over to loose fitting things like jogging pants, or if I am going to start having someone come in each morning to help me dress.
Second, regardless of when it happens, I know already I will get to the point where I will need help getting dressed. So now my decision is how I get someone to do that, to help me with the very intimate tasks of putting on underwear and pants and shirts. By that time I will probably also need help with my shower too. I will likely ask HomeCare for this assistance, and then they will ask me what time of day I get up.
That forces a new decision. I don't always get up at the same time. If I say, I get up at 10:30 AM, then there will be a caregiver here every day at 10:30 AM. But what about those days where I am up late the night before? What about those days where I am just too tired to get up? I will have to decide if I want my schedule set by my needs, or those of my caregivers. And of course, all along the way, I will have to decide what kind of clothes I need, purchasing the new ones as the time comes when the old ones no longer work.
I had to make a decision yesterday. I asked Rosa, my housekeeper, to cut back on her visits, to visit every other week instead of every week. I can no longer afford to have her here each week. HomeCare will be coming in every other week to do home making, and you might think that is a good replacement, especially since it saves me money. Unfortunately there are issues that most people don't have to think about with this situation.
HomeCare will not take keys for my apartment. They will not accept responsibility for entry when I am not at home. When Rosa comes on Thursdays, she is here regardless of whether or not I am at home. I can go out on a Thursday without worry. When HomeCare comes, it will be every second Friday; that is what their schedule will accommodate. I have to be here. This means every second Friday I am trapped at home to ensure HomeCare can get in to clean. If I want to get away for a long weekend, my apartment will remain dirty until Rosa comes the following Thursday.
That loss of freedom might not seem like a big deal to most people. The problem is that I don't have just one loss, but many losses. This is just another one, another decision forcing changes I would rather not have.
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