Well, okay, my question is not the same as that of Habakkuk, who was in pretty dire straits waiting for his text message from God. What has struck me this week, though, as I have read all the the stories of bloggers here, and have looked at the Lewy Body Association website, is that I might be in for a really long haul here.
Some of folks have been caregiving for 10+ years! Here I am, thinking that it’s no big deal to take a couple of years out of my hitherto oh-so-exciting life to take care of Mary. Her decline has been so dramatic in the last two years (she was still driving then!) that we all figured she’d only be able to live in her home for another two or so. Her symptoms, however, are nowhere near as advanced as Lewy carees I have read about.
Now I have to face the realization that I might actually die in my traces here. I’m 66. Ten years of Mary and I’m 76. Time for folks to start looking for my caregiver. So this is not an interlude. This is my life. Somehow, I have to make it count for something.
Things I am exploring are:
1. How to make a living while my time is broken up throughout the day between caregiving and time away from Mary (and I am grateful that at this point I do have time away from her). Mary has no money to pay me and NY has no program to provide stipends to caregivers.
2. How to do something constructive with my time when, as noted above, my time away is fragmented throughout the day.
3. How to deal with days on end of speaking to no one but Mary and, perhaps, the checkout person at the grocery store. Oh, and my cats Papaya and Prince Hairy. There has to be a positive spin on this one somewhere – nurturing my monastic side?
4. Making this a vocation, rather than just a job. This one is tough, because Mary is not, say, my sainted sister, but a real little s**t.
5. Developing mental discipline to keep myself motivated to be more consistent with meditation and exercise regimens.
My situation is pretty easy compared to most I’ve read about. I certainly don’t have the emotional pain involved with caring for a loved one. I am not whining, but have been hit with something that I hadn’t expected: a little frisson of panic at the thought that this is it. I am sure others have experienced this. I am just new at the game and feeling my way.