When Living with Alzheimer's evolves into Dying of it

Today, in a conversation with our gerontologist, we decided to start in-home hospice for my husband.

I was shocked three weeks ago when his demeanor, strength, and ability to walk plummeted. Since then, I have been incessantly investigating, monitoring, and acting on the symptoms, medication, medication side effects, and new symptoms and data. That is, when I was not pitching in on the basic caregiving (1. because some things now require two people for full safety, and 2. to reassure him with my presence).

I sensed that there was some chance that we could make it out of this period with something like his former self. I wanted to keep that option open by helping him keep the ability to walk despite all the sleeping/resting. This past Monday, as we finished "taking a walk" inside the house, it pained me to see how hard he was struggling on the last 10 feet to the bedroom. It made me realize that I needed to get clarity on whether the scenario of a rebound was realistic: I did not want to push him to do things if in fact there is low, or no, chance that he can benefit from those efforts.

Gerontologists see so many cases. Ours had reviewed his record for the year, listened to all that had happened recently and how Gary is now, and told me that this is the beginning of the end. Having considered that as one of the possibilities over the last weeks, I was not shocked. There was even a kind of relief in knowing what scenario to manage instead of managing to three different possibilities. I can now optimize within this sad but important stage.

Biggest Change. Till now, my primary goal has been to ensure that Gary (and we as a couple) enjoyed life as fully as his capabilities allowed. As the physical symptoms appeared, I added the goal of eliminating discomfort. Now I have to face changing the priority of those goals. The doctor says that his brain may have been damaged beyond the point of being able to process the kinds of things that we did for enjoyment. And I am sure that I want him discomfort-free more than anything else. In our case, she indicated that letting him sleep is more important than preserving his ability to walk.

She described the palliative care and hospice options. She recommended hospice because of the greater support that we would receive. I look forward to having continuous access to their deep expertise so that I am not alone interpreting symptom changes, equipment options, etc. I also appreciate that if things like hospital beds and lifts are eventually needed, they will manage that, and even get results much faster.

I realize now that the sadness that led to my previous post was justified. I will probably never have Gary back as fully himself again. I fear losing the vivid memories of him as I focus on taking care of him mainly in 'patient' mode.

I know I have a lot of emotional and practical things to learn about getting through this stage. If any of you have advice, I will read it with gratitude.