Monday, October 30, 2017

Be Sure to Take Care of Yourself

This is a very difficult post to write, but the fact that the subject comes up over and over again is maybe a hint to me that it's "time."

"Be sure to take care of yourself." "You're no good to him if you don't take care of yourself." "Who will take care of him if you don't take care of yourself?" But especially "Be sure to take care of yourself." I know you mean well, really I do. Maybe you can't think of anything else to say, and you're concerned about me. You see me running myself ragged, worried, exasperated, exhausted, and with a pasted smile on my face.

That smile appears every time someone says, "Be sure to take care of yourself." It protects me from saying, "Oh, shut up!"

"Why is that?" you ask.

I know you don't believe it, but I really am doing my very best to take care of myself. My spiritual self. My emotional self. My physical self. But it isn't as easy as you might think. I'm knocking on a lot of doors, hoping some will open.

Take, for instance, respite care. As I mentioned in a previous post, the Veteran's Administration generously offers two weeks of respite, twice a year. That is absolutely amazing, is it not? When I found out about it, I applied for my first two weeks. I can't even tell you how excited I was!
That was in May or June of last year. I got the call several months later, and my husband was all set for admission. The first week of December. Yep. Six months later. Six months during which his situation deteriorated further, his stage in the disease advanced, and his behavioral issues became more difficult to handle.

Almost as soon as I had dropped him off, I started getting phone calls. "How do you handle this behavior?" "How do you handle that behavior?" "What do you do when he does this? That?" Truly, it was a trying experience. I thought they were the experts, but apparently their expertise did not extend to my husband's stage of Alzheimer's. At any rate, four stress-and-phone-call-filled days later, more exhausted than I'd been when I dropped him off, I was asked to come get him. I was angry. I was disconsolate. There had been a ray of hope for me, and now it was gone.

Respite having gone so badly, it took me a couple of months to explore other options. Day care was suggested. I visited several places in various nearby cities and settled on one just about 20 minutes away. It would mean two round trips a day, each one including a bridge toll, but I was willing to give it a try. I applied in June of this year, and my husband was accepted pending a home visit by a social worker. I was hopeful. The young, attractive social worker arrived in August (yes, two months later), and my husband displayed (for the first time) a completely new behavior:  outrageous flirtation. She seemed nonplussed, however, and said we would schedule the in-office assessments the following week. At this, I went from hopeful to expectant to ecstatic! But then she called later that afternoon and said my husband was not a candidate for the program, after all. Wouldn't you think a place that specializes in memory care and dementia would be prepared to handle the inappropriate behaviors that are, after all, part of the deal? Another door slammed in my face.

But lest you think I have given up, allow me to assure you that I continue to knock on doors. For instance, I recently learned of a live-in Alzheimer's facility in a nearby town that offers 24-hour respite care from three days to a whole month. I am in the process of investigating that. Surely, surely there is something out there besides placement. Though I am not walking through this with blinders on, thinking placement will never be an issue, surely there is an intermediate step. Something that will give me some much-needed time off without permanently altering our life together.

I am so grateful for friends and family who have stepped up and offered to help in various ways. Movie outings. Shopping afternoons. Trips to the dog park. Overnight visits. Each one of these breaks, even for an hour, enables me to "take care of myself." To read a book. To write a post. To take a walk. To...go to the bathroom by myself. Thank you so, so much.


2 comments:

  1. My neighbor was able to find a person who did respite care. This person was employed by families whose relatives were in Assisted Living in our local nursing home, so that their Alzheimers patient did not have to go to nursing wing. You might check with local nursing homes to see if there are any similar people doing that. By having Lynn come each morning to help dressing and each evening putting them to bed, these patients were able to function well during the day. My neighbor was able to hire her to stay with Jim a few hours, even overnight, and it was a godsend. Worth checking to see if there are similar people available.

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    1. Thank you for that info. The regular care (getting up, dressed, getting to bed) I am able to handle. It's the sundowning aggression and physicality that's difficult. He's a lot bigger than me, so...

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