She sits at the kitchen table, clasping a pile of colored pencils in her left hand. She puts them down on the table, rolls them out into a neat line, looks at them for a moment, and picks them all up again. She may do it twice, or 60 times. She may stop and pick out a red one, drawing on whatever is in front of her, be it a card or book or coloring book or scrap of paper. Sometimes words, sometimes decorations, often lines or checkmarks adding emphasis to some portion of it. The longer she spends, the more layered it gets. Boxed, crossed out, repeated, and eventually large chunks are colored in solidly. Pick it up, put it down, be occupied … sometimes precise, sometimes idle … repeat.
I've spent the last few days in a very deep funk. Depression perhaps, but a weird one that I've not experienced before. Nearly blank inside, unable to put any words or depth into what I'm feeling, just full and empty both. Stuffed-full-to-bursting heart, empty head.
I'm trying to tease threads out of the jumble, so I can start unraveling some of the feelings I didn't have time to process over the summer. The summer we just spent parked in my parents' driveway while I helped out with my Mom's care, and the household in general. I'm not sure yet what it's done to me internally, but I'm going to explore a wee bit. I know I've learned a tremendous amount, and some of it is things I never wanted to learn, but apparently needed to.
Caregiving is all-consuming, relentless, and requires infinite patience. It's cruel, beautiful, heartbreaking, rewarding, and ugly. It takes humor, honesty, and endless creativity. It takes hunting … endless looking and watching ... to find the clues that are hidden in demeanor and eyes and body language (and the very few words), to discern what's going on in Mom's head and heart. What's revealed for a moment, and hidden for the next week. What's felt, but not expressed. What's fought, feared, accepted, or enjoyed.
She's sitting in the car in the driveway, having just come back from a walk at the park. Caroline* took her out today, and I'm still in the camper working on cleaning up in the bedroom. I can tell from the sounds outside my window that it's not a hop-out-on-her-own day, and I keep one ear open while continuing my task. I don't want to interfere, and the more people involved the more confusing it gets. After several minutes it sounds like she hasn't budged yet though, so I go out and ask if I can help? I try some of the same things Caroline's likely already tried … repositioning feet, telling her where to put her hands, trying a variety of phrases for “please stand up”, before stooping a bit and looking her in the eyes … “Can you please stand up, Mom?” She looks up at me, defeatedly, “No, I can't”. A first. Tears lurking, we each take a side and gently help her out of the car.
I love that I can still make her laugh … laugh more than I ever remember her laughing, just by choosing the right combination of slightly unusual words or using a touch of wry humor. I hate that she can't respond in kind. I love that she can laugh till she cries, if the joke is good enough. I love the look of wide-eyed-almost-scandalized delight she has in some things, though it's painful too. Where was that delight hiding for most of her life?
Watching her be stripped, slowly, of all the skills and abilities that she's gained since she was born … it's gut wrenching. But also strangely gorgeous. Losing the things that have defined her; service, usefulness, caregiving, card-writing, hospitality, organizing … the ability to control her body, her words, her reactions … it has left very little visible, except her spirit. A spirit that's clearer, simpler, and lovelier than I've ever seen it. Unadorned with expectations, assumptions, guilt, or duty. It's just her. My Mom. In a body that's betraying her and a mind that continues to confound her.
She seems to have accepted what's happening to her, so long as Dad is at her side (or coming home soon). She rests in him, and trusts him implicitly. There are glimpses though, many little ones, that show she is not (and does not feel) defined by her Alzheimers. She often knows and sees far more than she can express, if you watch her eyes and her reactions to conversations. She clearly ignores comments that sound demeaning or patronizing, and laughs immediately and appropriately when something is funny. She looks for things to laugh at too … it's her default way of looking for connection when she wants words but doesn't have them. A shared laugh means shared hearts.
We're in the living room long after supper, Mom and Dad and Michael and I, and it's nearing bedtime for Mom. I'd had the radio on for her sake earlier, and the classical music had switched over to Folk Night or some such thing. Odd little bits of song floated into the conversation, were mused over a bit as to their appeal and meaning, and then dropped again. Mom watched and listened from the couch, tracking every word out of Dad in his chair across the room, sharing amused looks with Michael and I, and taking obvious pleasure in it all. Dad eventually made a comment about it being time to head off to bed, and then launched into a medley/riff on the songs that had been talked about, personalizing it towards Mom and bedtime. Mom's amusement turned to delight, echoed heartily by the rest of us. Out of character, and an entirely perfect way to end the day.
I spent the summer looking for the positives, to keep my heart from entirely breaking. Looking at how the dynamic between her and Dad has totally switched, and how I joy at seeing her at rest in a way she's never been. A more visible tenderness, a slowness, a sweetness of time spent together. It may be very very quiet in that living room when they're alone, but the love that's been put in for the last 53 years makes a mighty fine marinade in which to sit side-by-side. Also seeing, and marveling, at the acceptance that marks my Dad's approach to the entire journey. One day at a time. Planning but not fretting. Taking it from God, and keeping an eye on the big picture while still living moment to moment. Not lashing out at what he's lost and what's being taken away, but enjoying what can be enjoyed, and bearing what's been given him to bear. Knowing that it's costing him in terms of his own health, but not even considering that relevant.
Those are the pretty threads. The gold in the pile of Other Stuff. Things like the grief I can't access right now that says I want to TALK to my Mom. Have her reach out with words, tell me what's in her heart, and how she feels. Tell me things I never asked when I could ask … didn't take the time or the care to ask, and now I can't. Ask her why she made the choices she did, and see if my guesses are right. Ask her what she regrets, misses, feels, wants. Aching regrets for things she never got to do, and never will now. Things she accepted, but never wanted. Seeing the beauty of her without guilt and duty and burdened about with much serving … and wishing it didn't have to be at the cost of everything else. Wishing she could have tasted it long ago. The refreshingness of being cared for, of being free of burdens and expectations sometimes. I see what she's reduced to, and I DO see the beauty of it, but it makes my heart ache abominably. I want more barefoot and bare-headed days for her, and I guess in a way she's getting them now. Hardly a care in the world, but oh … at what a cost!
There were great weeks, and scary weeks. Days she could walk a mile and not be winded or tired, and days she forgot how to walk at all. Or couldn't remember how to tell her muscles to behave so she could stand up. Days she laughed like crazy, days she slept much of it away. Days she came out to the kitchen to help when she heard dishes rattling and chopped veggies like she used to (always snitching a few!), and the day she went catatonic at the dinner table. The May days she could almost play Boggle though she mostly copied my words, and then the June she felt intimidated by the concept of it. By August I finally acknowledged it wasn't going to happen again, and put it away.
It's a winding down, a slow shaving, a hah-it's-back! but no-that-was-just-a-momentary-blip kind of slide into fewer and fewer things that she can do. Watching the skills fade into that part of her brain that she can't access, and knowing that it might reappear for a bit, but isn't likely to last for long. A reduction, an essence, a distillation … a stilling.
I miss her cards (and I know I'm not the only one). Her desk just off the kitchen still has her monthly-card-holder notebook that she used for years on it, fat with all the cards-to-be-sent tucked into its pockets. The calendar that hangs behind it still has mountains of birthdays and anniversaries listed on it, and the roll of stamps is still plump. She hasn't touched it in years I don't think. She does still enjoy getting cards though, and hasn't quite lost her ability to read cursive, so if you're at all inclined to reach out, now would be the time. She has baskets of them in the living room, and pores over them often. Photos too. She still knows some faces, and can dredge up some surprising names too if you happen to catch the right moment to ask.
I don't regret one moment of this summer, despite feeling it to be incredibly difficult. The hardness was balanced with a richness that I can't measure. To sit of an evening while listening to stories and family history from Dad, taking walks together, playing eye-games with Mom, tending to her needs, coloring together. Sitting side-by-side. Appreciating, soaking up perspectives and wisdom and a sense of how it feels to look at life from closer to the other end of the spectrum. A sharpening in my heart of what really matters, and what doesn't. An example of acceptance on such a profound level that I'm still grasping it. Peace that truly passes understanding.
How could I not find it all beautiful, while bursting into tears with an ache that comes from my very bones?
I've finally finished running around gathering the detritus scattered around the house and the camper, and everything is stowed. Michael and the boys have hitched. It's time to go. Very clearly time to go, despite the wrenchingness of it all. It just is. Mom is sitting on the front porch in her chair, watching the hubbub and scurrying as it eddies into a slow swirl of goodbyes and hugs. I go up and crouch next to her chair, resting my head on her knee. I've done this hundreds of times before, but it's been 35 years since I last took the opportunity. It was Grambie's lap in my teens and twenties and thirties. I look up at her and tell her how much I'm going to miss her, and she repeats it back to me, twice. I rest my head again, pain mingled with peace making it hard to breathe. This is exactly how it should be. She is my Mom.
* Her regular caregiver