Misgivings are Inevitable

My dad’s transition to the ALF may be happening tomorrow. We’re buying a one-week trial that I intend to turn into a permanent stay if at all possible.

I’m not all that thrilled with the way things are going.

They offered two choices: plain old ALF care and memory care. I want him in plain old ALF care because memory care is not as appealing to new residents. The other patients are in worse shape, and there are doors that keep the patients from wandering around. It would be easier to sell him on the main area, and he would enjoy it more.

I thought the best thing was to put him in the main area at first. Then, if necessary, he could be moved to the memory care unit. They didn’t agree. Evidently, his last stay gave them the idea he might run off, so they want him in memory care from day one.

Memory care covers a wide spectrum of mental states. Some patients are nearly vegetables. My dad is in bad shape, but he can talk and read. He knows who he is. He’s not rolling a wheelchair in circles, repeating the same nonsense syllables over and over. I think he would be fine in the main area for at least a few weeks.

I’m afraid the memory care unit will hit him in the face like a brick. Passing through their special red doors may feel like walking past the sign at the entrance to Dante’s vision of hell: “Abandon all hope, ye who enter here.”

I don’t want him to suffer. On the other hand, I cannot continue caring for him by myself. I can’t exchange my life for his.

I find myself wondering if there is a better place. I suppose I’m grasping at straws. I should think about what I’ve told other people: I have learned that there is no good solution, so I need to be satisfied with the least bad solution available.

He could stay here a bit longer. I could spend $15,000 per month on 24-hour assistants until he finally sank to the point where there was absolutely no choice. Am I wrong to choose not to do it? It’s his money, after all.

I would still have no life, though. I would be policing the assistant every day. I would still have to put him in respite care over and over in order to travel for business, and he would fight. And there would be the extremely unpleasant experience of having employees share a house with us.

The big problem isn’t a lack of money. It’s a lack of relatives to share the burden. Maybe a gigantic sum of money could overcome that, but based on what I’ve seen of the elder-care industry, I doubt it. I think if you spent a hundred thousand dollars per month, hired help would still give you the same problems you get for three thousand. They just don’t care as much as relatives.

It seems I’m stuck with the ALF. There is a nicer one farther away, but it seemed impersonal, and the drive will make visiting him inconvenient.

I want to visit a lot. I hope to go every other day. Since he agreed to try it, I have come to realize his departure gives us an opportunity to have a normal relationship. Right now, he misses me even though he lives downstairs. I come down to clean up messes, drive him to appointments, and be insulted and yelled at, and then I go back upstairs. I don’t spend any more time with him than I have to. Once someone else is doing the dirty work, I’ll be able to sit down and have a normal lunch with him. We’ll be able to have conversations of a sort. Today we went for a short walk, and the sensation of novelty and relief made me realize how abnormal our relationship has become.

If it doesn’t work out, I can always look for another way.

It doesn’t matter that much. He keeps declining. If memory care is overkill right now, the situation will probably be very different in a month or two. If I make a bad choice, it probably will not affect him for long. That which is overkill today may be completely appropriate in March.

This stuff seems very real now. I used to read about the short life expectancy and the severe problems that come with the progression of the disease, and I believed what I read, but it’s different to see it coming to pass. It’s as if a long, hot summer I thought would never end is over and the first frost has come.

This is a nasty illness. It’s better to go from cancer or a heart attack. Where is the closure with dementia? You never settle anything. You battle the disease and the patient, all the way to the end.

This is how it is. It’s not good, but I accept it, and I’m glad I won’t be a full-time caregiver any more. I can’t prevent other people from reaping what they’ve sown. I’ll do my best, and if there is pain involved, I’ll keep on living. I’ve seen misfortune before.

I’ll keep reporting on things as they develop.