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.

1 comment:

Y | O | Y said...

I think it's good to get referrals. Do you have an AIDS Services or Shanti in your area? They may not provide the care but you could tap their rolodex and recommendations for someone/somewhere that does. What about Meals on Wheels or something similar to handle food prep?