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Bumpy with Chance of Potholes

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August 2016

Life is a beach, some say. For me, life is a trail. Change or reorder the vowels, as the situation warrants. The very best thing about my small home town, and being back here as an adult with a car (with 268,000 miles on it), is there are literally hundreds of beautiful places to go—from mountains to sea—and be home for dinner.

When I returned four years ago to care for my mother, I didn’t have to be home for dinner. She heated one of the frozen dinners she insisted on buying or ate leftovers. Now, though, she can’t see what’s in the refrigerator and she can’t read or remember the instructions on a frozen dinner; and she is increasingly particular about food. So now I’m home for dinner unless my sister can be there. I wonder when the day will come that Mama can’t be alone at all. I’m grateful it’s not yet.

Monday I went to Tolmie Peak in Mt. Rainier National Park. As I rattle across the washboard road up the mountain, dodging potholes and sinkholes, I observe their connection with Mama’s life, and mine with her. She is better at avoiding them than I am, as she steers clear of my backtalk. I am apt to challenge her dementia and her woe; but I am getting better at not falling into the holes with her, protecting both her and myself.

Like yesterday when she said she guessed “we” shouldn’t make a pie again because the rhubarb juice burned onto the pie plate and she had scrubbed and scrubbed but it was never coming off. She guessed we could look for another Pyrex pie plate at an antique store. Was she really saying “you ruined a family heirloom”? I apologized and promised to work on cleaning it. “Just leave it,” she sighed. Michelle apparently got it clean, it was back in the drawer last night. I once might have said something about it not being hopeless after all, but now I let it go.

She fell into a sink hole the other day after a session of taping her epic life story. She was almost in tears as she told me at dinner that while she could remember the man she passed in the hall at her job 75 years ago, see his face, and what he said every time they passed, she couldn’t remember that his last name was Burroughs at the moment she was recording the story. “My mind is really going,” she whimpered. “That’s hard,” I said sympathetically, not adding what a minor forgetfulness that was. Not pointing out that she is on her ninth 90-minute tape and is only now at when she met my father, clearly remembering a great deal of detail. Only this one forgetting was important to her right then. She didn’t want to be bothered with facts.

On the other hand, she refused to believe me yesterday that her small cavity was filled in December; that it wasn’t at her February exam that the dentist said she had one; that she doesn’t need to go in before next month’s cleaning appointment, suddenly thinking that it can’t wait another moment. Such a jumble of remembering, not remembering, misremembering. These clear signs of cognitive dysfunction are harder for me to let lie.

As I have gotten moderately better at not challenging her memory when it doesn’t matter, I realize that when I do correct her I feel irritated with her. Don’t you dare lose your mind; I will keep you from it. When I don’t challenge her, even in my head, I feel sad. In the same way that anger is easier than grief, irritation is easier than sadness.

She hasn’t blissfully left the past behind and moved into life in the moment. She knows she is forgetting and she’s frightened. She insists her version of the story is the correct one, and she accuses the forgetting on those who care for her—pushing us into the pothole—because that’s easier than admitting the holes are in her brain. And it surely beats letting us be her memory.

I am doing well stepping between the roots and up and over boulders on my way to Eunice Lake and Tolmie Peak, until I lose my focus and stub my toe hard, going down on one hand on the steep trail. As I navigate the downhill switchbacks that come next, my toe throbbing, I understand the inevitability of imperfection at this job. I will lose focus and double back on myself, relearning what I have forgotten.

As I wind back and forth, down and down, I hear the voices of those above and below me, voices that will quiet on the straight sections, leaving me alone. They might be the voices of those who have gone before, reminding me that this is noble work and that someday I will appreciate having had the experience—a gratitude I’m not feeling right now. Or maybe they are the mentors providing information about why things are the way they are and suggestions for dealing with it. Or maybe it is my own voice, reminding me to let go of my stumble on that last root and keep going.

I grip my trekking poles and propel myself determinedly forward as the trail straightens and climbs back up.

Mama and I are climbing a mountain, and it certainly isn’t an obstruction-free or level trail. But we will get to the top. We will emerge from the trees and into the alpine meadow of wildflowers overlooking the mountains and the heavens. When we reach the summit, I will return alone, re-walking the trail in reverse order. This is grief. This is joy.

I drive home after my hike, sad the day is over, breathing new life for having done it.

The Giraffe in the Back Yard—Arguing with Dementia

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This post was originally published on my blog in May 2013, ten months after I moved in with my mother.

I know my sisters and I would be viewed with envy by those caring for a parent whose dementia caused a drastic personality change or who sees giraffes in the backyard. We know how lucky we are, and how lucky Mama is. In many ways she is more the person she has always been, both the maddening and the lovely.

Her dementia is insidious, though, and sometimes we don’t notice the subtle forgetting. We pass off the ridiculous things she says as the “say what?” way her mind has long worked. “Validation technique” is not useful. We can’t just ask her how many giraffes are in the back yard and say we hope they don’t eat all the leaves off the trees. Which arguably would be more fun (if also sad), and easier not to argue with.

She doesn’t remember the schedule. I have tried memory aids. First a large calendar with the dates made darker with her 20/20 pen. The calendar is right by the phone, but she schedules things on top of things anyway. She doesn’t look at the white board on the refrigerator, where I write in large block letters what is happening on the current day and the next day, so she is surprised when I tell her I’m going to yoga tomorrow, not today; or Rebecca is coming for dinner tonight, not tomorrow. I remind her to look at the board or her calendar and she says nothing.

She refuses to turn over control of scheduling her helpers. She forgets when they are coming, gets addled when they change the schedule, forgets that she has changed the schedule, overlaps them then complains each time that it’s confusing when they come at the same time. Last month she and M―without my knowledge or input―decided M would come four mornings a week rather than five, and chose my one day away for her to be off. Each time I offer to help, she says, “If I’m paying them, Gretchen, I will schedule them.” I roll my eyes and back off.

I want to be able to let her how-to instructions roll off of me. (How have I managed for forty years not to poison anyone by cutting vegetables on the same cutting board I cut raw chicken on without her guiding voice over my shoulder?) I want to be able not to argue when she tells me I should not have called the septic company I did because they have moved across town and they charge mileage. (It’s three miles across town.) I try to let go of her questioning of my ability to write checks for six bills in spite of the fact that I kept the financial records for a large church for eleven years.

It is stupid to argue with a person who has dementia. It’s hurtful and patronizing and harmful to their self-esteem. It takes a big person to take the abuse of no-confidence, and let it roll off without dispute. I’m not yet that big.

Her world makes sense to her. However inefficient, she is the CEO of her household. To imply I know how to do a task I have plenty of experience doing, or suggest there are other ways than the way she has been doing it for 75 years, is as belittling to her as her instructions are to me.

So how to cope?

  1. Center: focus on breathing, count to ten, go to an alpine meadow in your mind (and in reality whenever possible).
  2. Take a minute and move: don’t you suddenly need to use the toilet or feed the cat?
  3. Try to figure out what is behind the statement. “Getting sick from food poisoning is frightening to you, isn’t it? It is to me, too. I will be careful.”
  4. Disasterize: “What so you think would happen if we were late to your appointment?” Perhaps the anxiety can be dispelled when worst case scenari0 is explored.
  5. Find someone to talk to, start a public or a private blog, keep a journal.

Mama’s dementia is not about me. It’s not about her, either. She is not her dementia. I would hold her hand if she had cancer; her heart if it were hurting. I can hold her brain, too. I will not lose my mind. Not today anyway.