It can feel all consuming, as if all those "D-words" are the only things that exist, as if the person suffering is hardly there, crowded out by D's big and small. My father's time these days is spent managing all those D's, trying to make sense of them, trying to respond to them, and trying to make BIG D DECISIONS about care for his wife of 49 years, 8 months, and 18 days.
My too brief visits with my mother these days are overwhelming for so many reasons: guilt that I cannot visit more often; anguish over what she is experiencing and our inability to help; compassion for her, and for my father; gratitude that I can be there at least in some small ways. And great sadness over how much she has changed.
It is a painful time, but it is not without its bright moments. As is usually the case, one such bright moment came to me, and to my mother, courtesy of one of my kids.
I brought Little T to visit Grandma Rose a few weeks ago. Our stay was a mixed up, jumbled bag of good and bad. When we walked in, Grandma immediately said: "Boy am I glad to see you!" and we proceeded, over the course of about 45 minutes, to talk about things Little T was doing in school, what her siblings were up to, the book Grandma Rose wrote, and myriad other things. These brief interactions were punctuated by my mom's anxiety bursting forth in expressions of fear and struggle. One minute she was talking about her book, the next she was wailing about how the staff was punishing her, the next worrying about spitting too much, or her hands trembling, or the pictures on the wall moving.
(A side note: One of the most challenging things for me, about my mom's dementia, is that I'm certain that many of these things are truly happening for her; she is not imagining double vision, for example, or the walls moving, and those things alone would make a person "crazy." It's easy -- but not accurate -- to lump all of a person's odd behaviors into the category of dementia. They do not all belong there. If my hands trembled all the time, it would drive me nuts and would be such a distraction that I'm sure I'd talk of little else. That's not dementia: that's just life. In many ways, it does not even matter where normal ends and dementia starts. She still deserves to be treated with respect and dignity. As do we all.)
Little T did an amazing job of responding to Grandma's now and then questions and of trying to respond to what she thought Grandma might need. She offered tissues, looked for a book to read her, and gave me little suggestions of things that might help.
After about the 6th or 7th time Grandma raised her hands from the bed to show us, with some force and agitation, how much they were shaking, my giant of a tiny seven year old whispered something to me that made me smile. I told her to tell Grandma. Here's what she said:
When your hands are shaking like that,
you should pretend you have jazz hands!
Something amazing happened. Grandma laughed.
I had not seen that happen in months. I wanted to grab that girl, swing her around, hug her tight, and tell her how brilliant and wonderful she is. Instead, I laughed too, choked back a few tears, and joined in as Little T and I did our best jazz hands, in solidarity with my mama, whose hands now danced above her bed cover.
I thought this a rather remarkable interchange. What I learned later is that not only did it make my mother laugh, but it stayed with her. She told my dad the next day about Tallulah's suggestion to pretend to have "dancing hands" and since then, she will refer to her dancing hands frequently, with less agitation now. She also mentioned those dancing hands to me, almost a month later, recalling that Tallulah had suggested them to her.
She's not happy that her hands shake. But I think -- I hope -- that she now has an occasion to recall a small bright moment with her granddaughter when the shaking thing takes over. It makes a difference. It's a chance to smile, when she has too few of those chances these days.
I think, in the midst of my daily striving, while I'm trying to raise children right and do my (paying) job well, as I'm steering teenagers to good choices, and working with Rick to get the bills paid and the carpools accomplished and the house maintained, that the Jazz Hands moment is the single most significant event of the last several months for me. That moment is proof positive that simply being present is, truly, the most important thing we can do in this life and for each other.
It was absolutely not an earth-shattering moment. It was a quiet, simple laugh, almost no more than a smile. But nothing has meant more to me than to see my mother laugh that day, or to hear that the dancing hands have stuck around. Everything else swirling around me pales by comparison.
Jazz hands, dancing hands: take a small moment and transform it by saying something, anything, to make someone else feel better.
When it works, it will stay with you forever.