Wednesday, March 10, 2010

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, 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 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.


Greg said...

I'm so lucky that my Mum accepted help so readily when the time came. A couple of months earlier she would have kicked and screamed about being taken into care - but she was grateful for the attention when it came to it. Even though she denied that anything was wrong, she seemed to accept that she needed help on some other level. But then both my parents were "well behaved" authority-lovers. It doesn't sound like H is ready to lose his home with you, and the fact that he's showing distrust is worrying. Is there anyone he DOES trust?

A Single Man said...

@Greg...thanks very much for your comment here. I hadn't thought about involving someone else 'cuz I'm so used to doing this alone.

H has a local sister that he does trust, I think, that can help.

You're right, H doesnt' want to lose his home. In the time remaining, I'd like to honor that while still making certain he gets care and I can get help.

Y | O | Y said...

I know you are trying to involve him but I think that is more for you. Five minutes after you've discussed it, he forgets, and could change his mind anyway.

He isn't capable of making these decisions for himself and you'll just have to do it. This was advice that I received from my Mom's doctor. As the care giver, you have to give the proper care whether the patient wants it or not.

I think what you owe H is not necessarily input, but thoughtful consideration of him and his feelings, and thorough examination of the options before you so you can make the best informed decision.

Getting the sister involved may be good for you in the long run so you have family buy-in whenever there is a big shift in his care.

You haven't robbed him of the decision making, the disease did. All any of us can ask is that the people around us act in our best interest when we can't.

For yourself, maintain your personal integrity. That way, when you look back, you can always say that you did all you could in the rotten situation you're in.

You're doing a great job. H is lucky...very lucky.

The Discerning Single Gentlemen said...

Greg said...

Y|O|Y.... all I can say is W|O|W.... Great advice

A Single Man said...

@YOY Yes, I agree with Greg: Great advice.

Thank you for the perspective on my situation, which is confusing at best and heart-wrenching at worst. I keep thinking that I need to involve him, but you're right, he is just not in a state to be involved.

As you say, the loving thing to do is to take his feelings into consideration and do the best by him that I can.

Part of my hesitation and angst at all of this is that I DO want to look back and know that I did the best by him that I could.

Thanks again for reading and commeting.