Tuesday, March 30, 2010

Can't go home

Sad news...H's mom died unexpectedly last week. We're not certain, but we think the cause was an accidental overdose of pain medication.

Needless to say, H is beside himself, not just because his mom died, but also because he's not able to travel to the funeral due to his health. Fastest travel times to get to the service is about 15 hours and there's just no way he's up to the travel, even if I travel with him. He can only be up for 3 to 4 hours at a time at home….

It took a long time on the phone for his family to get that his health is just too bad to travel; maybe not being able to attend his mom's service will help get them out of denial. "Oh, you'll just be tired...we're all tired." You have no idea, folks.

After the service, which we participated in via Web video, H said to me, "I'm so glad I didn't go. That trip would have killed me."

H has been having dreams where he's lost, can't find his car, his cell phone, or his cane. And he can't seem to get home, no matter what he tries. In fact, in his dream, he's not certain that he has a home to go to, but he knows he can't stay where he is.

Monday, March 22, 2010

Navigating in the fog

In one year, H has gone from being able to fix food (a sandwich) and remembering to take his meds to not being able to. Went from being able to operate the washing machine to not being able to. And from using the oven to not being able to figure out the dials…the microwave is even harder for him to figure out with all the buttons on it.

Given all that, he still has his moments of cogency, which makes this much harder. He's still there, but he's just not able to do much. And, while he can do the core set of ADLs (dressing, bathing, transferring, etc.), he can't shop, can't make food or even remember to eat it if it's prepared ahead of time for him, can't do housework (including laundry), can't really get around (drive), can't remember to take meds, and can't do anything related to money (except tell me what I need to buy).

So, I'm looking for additional help for home and that could take any number of forms. Specifically for when I travel, but I'm wanting to get it in place because over time it will be more than just when I travel. I've think I've solved the issue for when I travel in the short term, but there are larger fish to fry.

I know that I am not willing to pay myself for caregiving as this not only sets a bad precedence, but is also too expensive for us to afford. Now, if it were for a short time, OK...we could figure it out, but it's not. Besides, if H needs full time care, I don't want him at home anymore for any number of reasons.

So, I talked with H's Dr. about hospice and am working that angle. While H likely has more than 6 months to live, his care needs are increasing due to his dementia. H's visiting nurse tells us that she has several guys on hospice care. And I'm exploring other alternatives as well.

Bottom line: I'll figure it out. The reality is that I need the help and so does H. As long as I can keep him safe and cared for at home without a full-time caregiver, I will.

It was striking to talk with H's nurse and Dr. about hospice with H sitting there...he just didn't react. I'd be terrified (he was in the past) at the notion of hospice. I just don't think he's home very much anymore.

But, if I had a magic wand, I'd love to wave it and have him well again, or dead, or already placed somewhere. I am so not looking forward to the next year or so.

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, 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.

Tuesday, March 02, 2010

And yet more snippets

Structuring my life
While it's true that I work full time, my "chores" for H actually structure my life more than work. Work is completely flex-time, but I have to feed H. Twice a day...breakfast and dinner. And the occasional sandwich in the fridge that I leave him for lunch. Not to mention all the times that he asks me for help. What will I do without this demand?

Feeling the emptiness
Sometimes, I'll be walking down the hallway in the house or making dinner and I get hit with the thought: "someday, H won't be here anymore." And I can feel the emptiness, I feel the sadness, and I wonder what it will be like without H punctuating my life with his health issues and care needs as he has these past 15 years or so.

In many ways, H is an anchor for me and I mean this in both positive and negative sense. While I yearn for my freedom from being a caregiver, I also know that this role defines both me and my relationship with H. When he is gone, what will I do without the constraints, not to mention the company?

Where it is going
In spite of the day-to-day ups and downs (which drive me to distraction), there is little doubt that the general direction is down. Now, we won't know what H's viral load is doing for a few more weeks, but it's striking just how impaired he is cognitively and how weak/tired he is all the time.

Last night, he closed his eyes at the dinner table and just sat there for about 5 minutes...then he went back to eating. I asked him if he knew that he was asleep; he said, "I wasn't asleep, I was daydreaming." "What were you dreaming about?," I asked. H says, "I don't remember."