The very basics

This has been a hard week for Susan and me since she’s presently in a “barely there” existence most of the time. Life is focused on the very basics of sleeping, eating, hygiene, and moving to the places where these things are done. She typically has a 20 to 60 minute period of better alertness right after waking before fatigue sets in again. Sometimes she’ll just as well sleep again as be awake after a period of sleep. I did not anticipate how hard this would be. Susan needs 100% supervision right now. My time is totally focused on her with a few hours here and there to try to do an errand or get something else done around the house, which I never seem to accomplish completely. It’s hard to distinguish one day’s activities from another – repetitive labors sort of blend together. Lifting her all the time is a strain. I long for Susan to be independent again and can only imagine what it’s like for her.

We had a nurse and a physical therapist visit from a home health agency yesterday. The nurse asked me a bunch of questions and did a basic exam on Susan. Later, the p/t asked me a bunch of questions and did a few exercises with Susan. I was disappointed. Each one visited so briefly and will have limited visits based on insurance provisions. I should have known better than to expect they would be able to improve her situation drastically or quickly – that’s going to take time. I’m glad the p/t reminded me how quickly a person’s muscles will deteriorate when they sleep all the time since I’ve been accommodating Susan’s need to rest mostly. But weakness begets weakness – she needs to do 4-5 sets of exercises each day to fend it off. She doesn’t say much these days, but her attitude remains good in spite of her generally depressed state. She says she’s going to keep trying and not give up.

One afternoon this week Susan became irritable and impatient – not a common state of mind. A few hours later I mentioned she seemed sad and asked her why. She said it’s hard to communicate. As I probed her thoughts a little more, she related to me she’ll have a thought or an idea she wants to express but can’t get the words for it. I agreed that would be really frustrating and offered to help her. We decided that when I notice she’s been quiet for a period of time, I’ll ask her if there’s anything she’s trying to say so we can figure it out together. It’s been a better idea than a reality since she usually can’t verbalize the topic in mind. I’m left to throw out ideas like, “Are you thinking about living or dying, about the kids or me, or about what’s on talk radio right now?” Sometimes it works. Sometimes she’s not thinking about anything. At least it may make her feel better that someone is trying to understand her.