My mother has started to transpose a line from one of her own poems "My Dreams do not Despair" into her daily monologue. It used to be:
"Old women, we all know, don't want more books to read, just a hand to hold that holds right back assuring memories are real."
Sometimes I wonder when she originally wrote this. I have always called her from wherever I've been in the world, but I've always had a twinge of guilt for being so far, knowing how lonely she was, even before the dementia started to isolate her further. And I did send her books. Mary Oliver poems, Adrienne Rich. I tried to interest her in some of my favorite fiction. Sooner or later the books would end up re-wrapped and given back. Mom always thought it was so funny to re-gift things. Even ten years ago, she was uninterested in engaging in anything new. Now that I am with her every day, she is still convinced she never sees me. "Oh, maybe once every couple of months,"she'll concede, "but that's not enough. It's not like living with you."
Deep breath. Don't argue with dementia.
One of my caregivers has written mom's poem out in multiple kinds of text. She is looking for the right font for her next tattoo. (Right now she's got some cool stars, a red bow on each elbow, nice "hello kitty' on one shoulder and zombie "hello kitty' on the other) I'm sure there are more that we can't see.
But mom now carries this tattered piece of paper with her at all times. We've found it tucked in her pockets, her underpants -
Two weeks ago, she woke up thinking she had dreamed it. She wanted to know if I though it was any good.
"It went something like this" she told me; "Old women don't want more books to read, just a hand to hold while they're trying to read."
I told her I thought it was really great, that it reminded me of one of her poems.
Last week, it changed a little: she would pull the paper out of her pocket for the umpteenth time and ask me what I thought, maybe she could use it in her new book, but she wasn't sure whose it was. No amount of explaining made sense to her. I couldn't convince her she had written it. "No, I don't think that's one of mine, but maybe we can use it anyway," she insisted.
This week she is convinced she is dying. "Believe me, I wish it weren't true," tears are streaming down her face,"But I'm not long for this world." She is telling us 20, thirty times a day, "Look sweetheart, let's be realistic. I don't know how old I am, 97? (this number changes with each telling) but no one lives for ever. And old women don't want more books to read, just a hand to hold while they are passing on."
I don't think she's going any time soon. She is strong as a bull. But she is starting to be fearful of even getting up at all. Dr. D tried to explain: "Imagine every time you turn your head, or walk through a door, or even stand up, everything is new, foreign. You wake up and you're in Morocco, walk to the bathroom? Mexico. Front hall? Dubai. It is terrifying all the time. And little by little the brain cells are just not connecting. Nothing is making sense.
For my mom, I think losing her words has to be the worst torture. She has so loved her poetry, her particular kind of word play. She has such a rich vocabulary. And still corrects our grammar, - (that's automatic!) But imagine everything that made sense yesterday being gibberish today. She is angry and lost. No map, no GPS, no guide. Sometimes the only thing that helps is holding her hand and staring deep into her eyes. "Are you REALLY Jonatha?" she'll say. "Yes, mom, I'm really Jonatha."
More tears, "I'm so glad you're here."
My dreams do not despair
Never intending to give up, I'll take the remnants
of my dreams onto another stage-museum; clipper-ship
that trims the globe or even grassy ranges that were once
for buffalo. It's not too late. Most things will be apparent on the way.
The world consists of rumors after all; where we perform the
arabesques of joy, shy poetry that tells of love as if it was
a constellation in the sky.
Old women, we all know, don't want more books to read but just a
hand to hold that holds right back assuring memories are real.
I was lucky enough to escape to the ever sacred SQUAM ART WORKSHOPS again this past week. I am always inspired, re-booted, surprised there.
This year I found so much power in the gathering. I came home with extra depths of love and patience for what lies ahead.
Thank you ALL, who shared YOUR stories with me, who urged me onward with mine, who laughed and commiserated with equal enthusiasm.
My mother had turned a very big corner even before I left for Squam. All of a sudden, it seemed her synapses were on constant misfire. Nothing made sense. She'd say one thing, forlorn, agitated, inconsolable, but mean something completely different. She'd cycle and cycle, and nothing would help. It could take an hour just to get her up and out of her chair to the bathroom.
Something about the L. L. Bean Catalog snapped her out of her funk. At least in short stretches.
My husband printed up batches of faux large type "order forms." She was beside herself. She spent most of the four days I was gone going over and over her choices.
"they have free shipping and lots of colors" she told me on the phone when I called to check in. "I think you should order some for yourself too. As many as possible. And it won't really matter if they don't fit, because I have a friend in an orphanage, and I know other people who sing who might want them." She even made up her own version of the catalog from memory when we put the order forms away for the night. It went up in the Stoney Gallery.
I got home, and one of her poems - "Song for the Day" had just been published. It's one she wrote years ago that they must have pulled from the archives. She was unimpressed, even though her name was there at the bottom. She kept staring at it, then turning the page. Something wasn't working for her. She couldn't find the color chart or the size options. She read a little bit from her poem -
"now letting go the clutches of time I move, and feel, and have no fear" -
she looked over at me totally deadpan and said, "Awwww. Nobody's gonna believe that! come on!.....Now I want you to look over the sizes and the prices, they have lot of colors too, and FREE SHIPPING."
This morning when I sang her "the hills are alive with the sound of music" she was convinced she had ordered that too.
My mother and I are connected in haunting layers and undeniable synchronicities. I told her I was going to write some songs yesterday, and she immediately said, "I think I've written some songs too." "Well, then we'll have to sing them together later, and compare" I said.
mom: "First I'll have to finish my new book which is called 'Mothers and Mums' - you know my mother played the piano so beautifully, everyone in the neighborhood would come over and beg her to play for them. She was also always 'doing' for other people. Wondering how she could help out with those less fortunate than herself. Amelia Catherine Behrhorst Stone. And she really had a terrible time putting up with my father, because he could be awful. But she never complained."
These strains and ties and molecular connections and instincts. Take care of your own. Stiff upper lip. Always a smile. Keep on Keeping on. Mom hasn't written anything new in such a long time - well, she'll write about her pain,
which breaks my heart. But we are doing the best we can, - this pain conversation seems to be her new default when she is confused and afraid.
Yesterday I found a sweet one liner about Amelia.
Some days she will spend the entire afternoon addressing an envelope over and over to my brother. It turns into some kind of brute art. I actually cherish these pieces.
At the end of almost every conversation we have, she will say, "You know, we should make a play out of this, we could make a lot of money!! Are you writing this down?" And I have to say, "Yes mom, that's a great idea, every word!" Because I suppose I am writing my own "Mothers and Mums." Stolid and whimsical as she explained herself to Dr. D. She has been so many different people since I've known her...and now we are the play within the play.