Thursday, September 10

In gratitude of caregivers

My mother and my stepfather have dementia; hers seems to be worse than his. On some days. I know I'm not alone. Dozens of Boomers find themselves in the same situation as I. In fact, we could be one humongous support group.

About a month ago my mother fell and broke her hip. This was followed by surgery, which was followed by rehab, and because of the curious mix of dementia and anesthesia, is being followed by more rehab. What happens four weeks from now after she has her follow-up check-up is anyone's guess.

I don't live near my folks. Moving her and my stepdad closer to any of the siblings is improbable. I suspect we all go through the same process of rationalization: keeping them where they are keeps them closer to their doctors, to their church, to their old neighborhood friends. The priests from their church still visit them though they've not been to that church in years. One of my mother's neighborhood friends still visits every few weeks and is still relieved Mom remembers her, or seems to. I think my rationale is as much about those who are still invested in their lives as anything else.

This week I've been able to visit with them. I met with the rehab care team to get a better sense of how she is progressing, to confirm or deny some of her stories. As far as I know my mother was never a supermodel living in a nudist colony in the Pacific islands though she did work for the telephone company in California. Makes me wonder about those telephone operators back in the day.

My stepdad remains at the assisted living facility, leaving the apartment more than he did when she was there, which makes me wonder if he is simply lonely or if he is coming into his own again. And then I wonder what will happen if/when they are again living together. But I can't wonder about that too much or worry about the consequences for at least another four weeks.

Though I know I am not alone and, as I said, people my age could form a nationwide support group, I am still surprised, and yet relieved, when others experience similar things as I. The differences in personality and behavior when she is with me as opposed to when she is with other people, wondering which is the "real" person or if this is simply a fascinating demonstration of the brain at work, when an individual knows she is with strangers and should behave with civility as opposed to being with family when she can be the mean-spirited hag. I confess it is exhausting and I'm still astonished when people tell me what a delight my mother is and how sweet she is.

I am still surprised when she asserts something as fact with considerable authority and confidence when I know that thing hasn't an ounce of truth. Yet it is her truth for that moment in time. And so I am less shocked--and I stopped trying to clarify or correct her months and months ago--when she conveys these incidents as truth and considerably more fascinated to know what informs these fanciful fabrications. Except for the nudist colony. I do not want to know.

And then, suddenly, there is the fullness of her and her lucidity for a moment or two, or maybe several moments. Then it's as though the brain can no longer hold its breath or carry the weight and she, whoever she really is, disappears again.

What's weird is that even some of the fabrications have some elements of truth so I can almost see how she has woven those stories. What's also weird is the consistency of her thinking and personality in some of those stories, even with me who seems to be a trigger that brings out the worst in her.

What's weird is how she says one thing to me and then something else to one of her therapists, and the answer she gives to her therapists is the more socially acceptable answer or statement so it suggests the brain still manages to differentiate.

At the end of a couple of hours, I'm exhausted. Perhaps I react to everything differently because of the emotional baggage I carry to our visits (I've tried leaving it elsewhere, but this baggage is hard to lose) and because of our history. I remain in awe of the therapists and nurses, men and women of all ages, who are so gracious and patient with all of these residents. I can only begin to imagine how exhausted they are at the end of day, and even then I'm sure I'm not close to what they carry away and try to shed before they return to their own families.

Not long after my mother was moved to post-surgery rehab, I was able to connect with someone who likes being a caregiver to the elderly. Perhaps she manages as she does because she has no history with these folks and because she is with them for only an hour or two each visit. But the fact that she is able and willing to visit with my mother and my stepfather, to be my proxy when I cannot be around--physically or emotionally--makes it easier for me to visit knowing there is someone else who can see and hear them from a different vantage point and help me find some balance, emotionally and in perspective.

I cannot imagine what it would be like to try to cope with all of this without the caregivers at assisted living, skilled nursing, and rehab facilities. I cannot imagine what it is like to be in their shoes, but I am immensely grateful for them. Every day.

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