You can't incarcerate me

I've been trying to follow the advice of a friend and involve H more in care decisions. As I'm heading out of town this weekend for work, I was talking with him about how we can cover his care needs while I'm out gallivanting about the planet.

For a long time, he's claimed that he's "just fine" when I travel, but I know better. But it is hard to convince him of that. Very difficult to involve someone in their own care decisions when they can't remember what they need or that they need it at all. Yet, not involving them creates other issues.

I said, "I'm worried about you when I travel...taking your meds, eating...how can we ensure that you do these things when I'm gone? What are we going to do?"

For some reason, H has forgotten to take his meds in the evening two days in a row. This is really, really bad news for him for lots of reasons...at least of few of them life-threatening.

And I used to track his meds and when he takes them, but I forget too and assume that he does it. Just one reason why H and I aren't the best care team for him.

"Honey, if you forget your meds when I'm here routinely, how do we make certain that you take them when I'm gone?"

"I always take my meds and I don't need the help," he says.

I say, "Honey, how can you say that? We just talked about it. Is it possible that maybe you don't know what help you need? That you can't remember what's going on?"

He's getting defensive now, "What do you mean?"

I say, "Well, for example, when you wanted a med holiday, I told you that you had done that before years ago and that you became very sick…."

"I did?" he says. He doesn't remember either the events or us talking about it.

"Yes, so please trust me that I'm trying to keep you safe while I'm not at home. I'm talking with you so that you're involved in your care decisions."

H says, "Well, you can't incarcerate me!" (I'm thinking...honey, I don't want to do that, but what options do I have when I'm gone or even in general? And a part of my brain is saying, "Watch me!")

"That's not what this is about, H." At this point, I'm sitting in a hall of mirrors.

While a bit frustrating, this conversation was very insightful for me. He sees placement as incarceration and he clearly doesn't trust me in this regard, which is why I'm trying to involve him in all of this.

And most importantly, I realized that my evaluation is the only thing that matters. In spite of my habit and desire to involve him, I can't count on him in this way.

Clearly, his dementia is getting worse and fast. My guess is that the new anti-virals are not working for him...if his viral load isn't dropping substantially (we'll know in a few weeks), I'm moving on hospice. And H and I need to have the hospice conversation. Fine, they can come to our home, but it is likely that they will be coming this year.

What do you do? Go through the motions of involving them and then just ignore what they say? How can you get someone to accept care when they can't remember that they need it? How do you get them out of their denial if they can't remember all that has happened? How do you bring up hospice when they don't remember why they need it? How do you tell someone you love that they're not "just fine" and that they won't get better?

So many questions and (I think) so little time.