Failing To Feed Myself

I managed to eat my breakfast today. It did not go so well with my dinner last night, where my arms failed me completely, leaving me unable to pick up a spoon, unable to lift the mac and cheese from the bowl to my mouth, unable to feed myself. In the final analysis, my HCA had to feed me my dinner. This situation becomes increasingly frustrating when you consider that I was the one who had prepared that dinner. So I can cook, but not eat; or eat, but not cook.

In fact yesterday almost seems like two separate days. I got up when my HCA, Yvonne, arrived. She is perpetually late, so my rising time was 11:05, rather than the normal 10:30 AM. I don't like the lateness most days, as it takes from me what is a very limited amount of time in my days. Nonetheless, perhaps I should be grateful she arrived at all. I've had that happen too.

So she arrived, got me up, showered me, dressed me, and did my exercises, after which I was thoroughly exhasuted. I dozed in my wheelchair until late in the afternoon, when my afternoon HCA arrived, fixed a disconnected catheter tube and changed my wet clothing. Shortly aftwards, Dion came for a visit, an excellent visit which roused me enough in spirit to convince me I once again had energy. It was a trick.

After Dion left I want shopping, all the way over to Brentwood. I wanted to pick up some beer at the liquor store as I have none on hand to offer guests, especially those who don't like wine. I know, there are some people like that. So off I went, rolling over to Brentwood, shopping at the liquor store and for a couple of things at Co-op. Nothing big, Nothing urgent. Unfortunately I took a lot longer browsing than thought. By the time I got home to start dinner, it was already 9:00 PM. My HCA, Kabira, called shortly after that, saying she would arrive on time, at 9:30 PM, to put me to bed.

I had not eaten that day, not a bite. When my HCA was to make breakfast, I did not have the energy for it, nor even for a cup of coffee. Then again, she had but 10 minutes remaining in the schedule, so any sort of cooked breakfast was out of the question. I had no cereal, one of the things I eventually purchased later in the day. Yet here I was with just a few moments to make and eat dinner. So I grabbed a box of KD, mac and cheese at its finest. Even though this is advertised as dinner in less than 10 minutes, it took me almost 30 minutes thanks to ALS. I pushed hard to get it done, while at the same time loading groceries into the fridge and cleaning up the kitchen counter.

Kabira arrived at the same time as my KD was ready. She said not to worry, that I should eat. She headed into the bedroom to get my bed ready, to prepare the catheter supplies, to do what she does before slinging me into place. I tried to eat.

Tried. That's the word. I tried to lift up the spoon. I could not. My right arm failed completely. My left arm had failed about a half hour earlier. Neither arm was strong enough to lift the spoonful of macaroni and cheese. I could't even get it past the edge of the bowl. I felt ashamed, terrified, shocked, afraid. This is the next big thing to go. Soon, feeding myself will be a thing of the past. Someone else will have to feed me. The ironic part is that I had the strength and ability to cook the dinner, but not to eat it.

Even today I found myself needing both hands to lift my fork at breakfast. So what next? When I have dinner with friends, will one of them have to feed me? Will I be completely unable to feed myself in a few weeks or months? What I am going to do, other than cry? This might be the turning point, or the end point. It is something I have to live with, and think about every time I try to eat something. Yes, try. That is the word. Yoda was wrong.