There are still periods of several days in which I don’t really notice any cognitive symptoms. Strangely, I find myself almost wishing there were some symptoms to anchor me. It’s sort of like pressing on a sore spot to make sure it still hurts. It’s not that I don’t have doubts about the diagnosis, although I do irrationally consider the possibility that the diagnosis is wrong. As I’ve explained before, my first reaction to such thoughts is not anticipatory joy but actually anticipatory disappointment. My identity has gotten so wrapped up in my disease, that I would regret losing the immediate future I’ve been planning for. This is just one more symptom, I think, of my needing a “self” to anchor me. I need to keep reminding myself that as natural as that need seems to be, I quite agree with the Buddhist recognition that hanging on to self is a cause of deep suffering. Let go. Let go. Let go!
It’s one of the reasons I feel okay about trying to avoid having to pay for my nursing home expenses ourselves. Our government should be doing far more to encourage a civilized society, especially creating the conditions for justice, which means a redistribution of resources to make our society livable for the poor. Since Marja and I are giving the lion’s share of our resources to that very purpose, I have no reluctance in having Medicaid pay my nursing home expenses if our money will be used for what government ought to be, but isn’t, doing.
The best solution to keeping our money away from Medicaid, it seems, is to create a trust that Marja and I no longer have control over and then to put most of our money there. Our trustee, probably our eldest daughter, could then disburse the money to the causes that we consider important as well as a certain amount to us for living expenses beyond Medicaid. It’s hard to believe it’s that simple and that everyone in our situation doesn’t choose it, but, according to the lawyer, most people don’t trust anyone else with control over their money, even a family member. What does that say about our culture?