The Art of Caregiving

1

We’re getting a weekend “off,” effective this evening, from being caregivers.

I feel guilty for being so, well, kind of psyched about this, but I’m sure a lot of you know what I’m talking about. Kevin had mentioned our weekend to a coworker of his, a woman with a fairly new infant, and she said, “Oh, yeah…I get it. We went to visit my parents not too long ago, and on a Friday night, my husband and I spent, like, four hours in CVS. It felt like such a luxury.”

And when Kevin told me that, I said, “Oh, my GOD. That sounds AMAZING.

In many ways, caring for someone with Alzheimer’s is like caring for a small child. The person is utterly dependent upon you for just about everything, you have to make plans practically months in advance to just be able to go to a movie, and if you turn your back for even an instant, something is going to get broken/lost/drenched/flushed down the toilet.

The difference, of course, is that in most cases, a small child is going to eventually become more independent and able to follow directions. That’s not the case with a 73-year-old woman in the more advanced stages of Alzheimer’s. “Don’t use your sleeve to mop up water on the counter” means nothing to her. She is unable, more and more, to create NEW memories, so she will pretty much just continue to “clean” with her sleeves, and we will just continue to hand her paper towels, which she’ll fold up neatly and store in the dishwasher.

This morning, my mother-in-law was up and at ‘em much earlier than usual, and so when we went upstairs to give her breakfast, she’d already created enough minor chaos to delay our getting to work. We’ve made it so she can’t turn on the stove or stop up her bathroom sink. We’re relatively certain she won’t burn down the house, or flood our basement (again). But she can still pull all of her socks and bras out of her bureau and scatter them throughout the house in fairly short order. Why? Don’t ask. We don’t. I’m sure there’s a logic to it, but I’m frequently just too tired to crack the code there.

But there is a code. I’m certain of it. As her language skills continue to decline, she finds other ways of expressing herself.

A couple of years ago, when she started losing the ability to shop for herself, or find the words for what she needed, she relied on something that she still knew how to do, and that was to draw pictures. And so her shopping lists for us became little works of art:

16881ce2

She’s since lost that ability (her home health aides tell us what she’s getting low on). But she now leaves what I refer to as her “art bombs” all over the house. They’re really fascinating.

1656007_10153897161035085_1265602622_n

In a strange way, it’s both comforting and life-affirming to know that art can still happen, everywhere, to anyone, even accidentally. She can’t remember how to sign her name, but she can do this. She can communicate, in her way, what is happening to her brain. It’s shrinking. I cannot even begin to fathom what this is like, and yet here she is, telling me.

These are things that belong together. I wish I could tell you why. They’re all small. They all remind me of something. They look nice here. I’ll keep them here for a bit until I decide they need to go somewhere else. But look at them, please. Notice them. Pay attention. Be in the moment with me.

The biggest challenge for me anyway, regardless of my current caregiver status, is staying in the moment. Trying not to spiral off into a grim future, or hang onto something that’s done and gone. The present is intensely uncomfortable for me. Maybe that’s an alcoholic thing. Nothing, save early sobriety, has forced me into this state of accepting the present moment for what it is, more than caring for someone with this disease.

I’d like to think that this is the greatest “reward” for living in this house, keeping her here with us for as long as she’s able to be here. Too, I am reminded that this is what it means to be committed to someone. That whole “for better or for worse” thing. I can’t say “I didn’t sign up for THIS,” because the fact is that I DID. And that’s okay. It’s made our marriage stronger, whereas others have crumbled under this kind of day-to-day pressure. Another “reward,” although I don’t really like to think in those terms. I can name at least a half dozen friends who are going through the exact same thing. What I’m doing? Not so unusual. I don’t deserve some kind of karmic prize for this when it’s all said and done, and it’s not particularly helpful to me to expect one.

I can only hope that I’ll get to spend a few hours in CVS. Because that still sounds AMAZING.

The Best Of All Possible Wolfs

0

In my late teens, I read an article in SPIN magazine discussing artists on the “margins” of popular culture. In it, one of the reviewers mentioned (Lisa) Suckdog and (Jean Louis) Costes:

She’s from New Hampshire and he’s from France. They sing over tapes that they’ve made together, or stuff that they’ve taped off the radio, generally really horrible AM radio sludge, whatever they could find. And they put together their own 30-minute rock operas, usually separately, sometimes together.

Up until that point, it hadn’t really occurred to me that you could DO that. Outside of your bedroom, I mean. My sister and I created elaborate performances and interviews with each other on our matching tape recorders, until we “grew up,” stopped talking about the strange things we saw, and pursued more acceptable forms of expression, like Chorus and Drama Club. That this Lisa Suckdog (real name: Lisa Crystal Carver) was STILL doing these things, and getting attention for it, blew my mind.

A couple of years later, she began publishing her own zine, Rollerderby. Again, this challenged my ideas of what it was to be successful, and what was considered worth publishing. In Rollerderby – EVERYTHING was worth publishing. Interviews with Courtney Love and Beck were run alongside creepy found love letters and musings on Claudia Schiffer’s cheekbones.

Lisa Carver fascinated me. In all the years I was a Rollerderby reader, I never once attempted to contact her. I didn’t feel that I was the least bit interesting to her, even though she seemed to find something interesting about everybody.

So I suppose it shouldn’t surprise me that our friendship started over something completely trivial and mundane: pizza blotting. The internet emboldened me to the point where I wormed my way into some online conversation of hers, and declared that anybody who blotted his or her pizza with a napkin before eating it was stupid, that’s all. Stupid.

Her response:  “HEY! I BLOT MY PIZZA!”  And somehow that led to us going out for tea.  We’ve been friends ever since.

I’ve said this before: people like to tell things to Lisa Carver. She is as interested in the daily peccadilloes of the postman as she is in the full-on debaucheries of rock stars. Everyone’s story is valid and worthy of telling.

But there are things that Lisa has only just begun to tell about herself. In Rollerderby she was joyful, thoughtful, and in perpetual motion. I think I might have sensed some real pain in her stories and reviews, but knew it was not my place to demand any more than what she was already giving. But the words of the SPIN reviewer who first caught her act years ago were never far from my mind.

…something really bad happened to her at a young age; she’s very strange–it seems as though she’s eight or nine years old and she’s never trying to come off that way.

It turns out that something really bad DID happen to Lisa. A lot of things, actually. Things that most of us cannot even fathom. Things that would rightfully turn a person off from the rest of the world. But nothing has ever killed Lisa’s spirit of inquisitiveness, her pursuit of what is right and ethical. Her childhood taught her what NOT to do in raising her own children, Sadie and Wolfgang (Wolf).

She has (with his full permission) released a startling book of Wolf’s artwork called Wolf The Artist: From Apocalypse Back.

Wolf is a strange angel, a young man who was born with a chromosomal deletion, a hole in his genetic blueprint that’s taken 17 operations to “correct.” He lives in this world with us, but he is not of this world. Lisa says:

He is missing the Western individualist division between self and the rest of the world…(he does not) intuit the invisible lines between valuable people and things and the not so valuable. It can be irritating to people that he doesn’t seem to see their clothes, their position, their authority or importance, their mood. The thing is, he doesn’t see those things about himself, either.

What Wolf does relate to is nature. Moss, rocks, hamsters and sheep all carry the same weight with him. Wolf notices the things the rest of us — mostly — do not, as absorbed as we are with things that are not real to him: celebrities, fashion, small talk. What is real: “animals, ghosts, life on other planets.” He picks up the frequencies of the spirit realm. He is a challenge to those of us who can’t, or won’t, see “reality” as fluid, changeable, subjective. I know that if I got to sit down with Wolf, if I got to tell him that my sister and I have seen ghosts, he would nod and say, “Of course you have.”

In some ways, Wolf reminds me of my niece. Kiki, who is on the autism spectrum, also struggles with finding her place in the “real” world without having to abandon the world she knows. We have a bad tendency to wish “normalcy” on these kids, when it’s the last thing they want for themselves. Lisa understands Wolf’s needs and wishes, and challenges a system that would have her believe it knows what is best for him. As a result, Wolf is now allowed to learn at his own pace, in his own world, contributing to THIS world in the ways he knows how.

Wolf’s father is out of the picture; he has been for years.  I am sorry for him; he is missing out on a relationship with a truly spectacular human being.  It’s sad for Wolf, but I can’t help but feel that he has become the best of all possible Wolfs having Lisa, and Lisa alone, fight for him.

Please buy your copy of Wolf’s book here.