April 11, 2016

I am thoroughly tired of being tired all the time.

This anemia, no matter what the cause, is beginning to wear me down. I’m only up for a couple of hours these days before I want to lay back down again. It has taken me all week to straighten one room, and my sister from West (by God) Virginia is going to try to make it here for a few days, in just over a week from now. If N were still here with us, she would help, but we have a new caregiver, S, starting today. It takes a while to get used to a new person in the house. And it will take a little time for her to adjust to us, too. Mom is easy care right now and mostly needs companionship and someone to fetch things for her. N would help me with other things, too, while she was here. I can’t automatically assume that the new caregiver will be so willing. We had one aide come out who refused to do anything not directly related to the patient, to the point where she would only wash the dishes that Mom ate off of, not the cooking pots and utensils, and certainly not the dishes we ate from. I have been told that the new aide will not empty the litter box, something N was thankfully willing to help me with. I’ve been avoiding the task while healing. I also have an appointment today with my pain specialist, and I should make a list of duties for the new aide, so she can start to establish a routine.

Kevin will be going to work for the seventh day in a row, overseeing one of the endless projects done during the slow season, which is almost over. I worry that he’ll never see a point where he can take some long overdue time away from it. He really needs a respite from…everything, before the stress becomes overwhelming. I may have to scheme with his boss to get him to step away from it long enough to catch his breath before he micromanages himself to death. He’s done amazing things with the two hotels in the past five years, giving the properties elegance and sophistication and setting a high bar for the other hotel properties in the area. I am immensely proud of him. I worry that he may be staying extra busy with work to avoid stress at home, but things have been much better with Moms’ new medication. He will be taking tomorrow and Wednesday off, and I’m grateful, although he never really takes a day off as long as his electronic devices work. One of his days this week started with a three am phone call. Wednesday is when I will be seeing the social worker to get started on Moms placement, and have her needs reevaluated. I’m not going to put if off because of the eye surgery or the upcoming reunion. I can still take her to the surgeon even if things move quickly. And we can probably take her out every day from a facility for the reunion, if needed. It’s going to be hard no matter when we do it, so it makes sense to get it done. Mom has been exceptionally lucid of late, and even though quite disoriented, she understands more of what’s going on around her. This makes the job of telling her about the move something I dread even more. Especially since up to now she has refused to even talk about it.

I’ve been operating on the theory that it would be better to hold off telling her until it’s a reality, so that she doesn’t have time to get anxious and worked up. I want to avoid distress wherever possible, for all of us. I hope to ask the social worker, maybe it would be better to start talking about it, and getting her used to the idea…I simply don’t know, and I’m afraid I’ll fumble it. Like I’ve said before, my Cardinal Rule is that nobody makes Mom cry. I broke that rule when it was time for her to stop driving, and I dread it happening over the difficult but necessary move. My sister will be seeing her right before the surgery with her vision down to almost nothing, and then later at the reunion, after her eyes have both been done. The change should be dramatic. It won’t give her 20/20 vision, she will still have glaucoma and macular degeneration. But the blurriness and fog should be gone. I was puttering around in the den yesterday when she came out of her room. She had detected movement, and came to the door. I stood still, just a few feet away from her, and she could not see me. I watched her face as she tried to decide whether something was there or not, and my heart ached at her indecision. She really can’t see a thing, only blurs of color that may or may not move. She puts up a good front, but fumbles more each day, feeling for each piece of furniture along her path. I make sure to tell her where each food on her plate is, and what the colored blobs are. I do it matter of factly, like a host in a fine dining establishment presenting cuisine. I feel a curious mix of pride and sadness as I watch her efforts to adapt, trying to navigate the house without running into anything.

The biggest change, though, has been her sleeping more and eating less. I’m pretty sure that she’s been losing weight. It’s one of the reasons why I think we need to make this move. She needs activity. There is also the issue of hygiene, and my inability to even gently force her to do it. As far as her new teeth go, the dentist told me that for the time being, it’s okay for her not to take them out and clean them, but that too will have to be addressed in due time. I’ve been unintentionally capitalizing on her sleepiness, giving in to it too often myself. And she needs the safety of structure. Instead of her rising early and hungry, she will now sleep in until nine or ten. She does get up, and checks her talking clock, but then turns around and goes back to bed. I’ve been pretty lax with her, although I never let her go too long without a meal, or retire for the night without at least offering a bath. While the caretaker is here, she will stay up, usually. N always made a point of getting her out of the house, even if only for a donut and coffee. Each caregiver has their own talent-we’ll have to wait and see.


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