Don't Argue, Don't Reason, Don't Explain

My mother is fast descending into a twilight zone. She is having trouble concentrating and remembering things from moment to moment. Each time I see her, she seems to have gone deeper into the dimness.

One bright spot--really the only bright spot I have seen since she moved to California in January of 2008--is that she's writing in a journal. I bought her a blank journal for Christmas because she was writing bits of her past in the notebook in which she keeps track of doctor visits, upcoming events, and how to do simple tasks like bathing or turning on the heat. I said that she should devote a special place to her writing. Of all the many things I have encouraged her to do, writing seems is the only one she has taken to heart. And encourage it I do. I tell her that this is a great way to keep her mind involved.

Now when we get together, she asks if I'd like to hear her read from her journal. This helps tremendously, since her conversational skills have really deteriorated. Once I have asked her how she is and what she did during the week, she falls silent. This way, with her journal, she reads aloud to me and I ask her questions about what she's written, ask her to fill in details, and she makes notes in the journal that she says she'll flesh out later.

Last Sunday we sat in a coffeehouse while she ate a slice of cheesecake and read aloud of threshing cooperatives and her high school days. She wrote that she and her friend drove her brother Max's car to the last six weeks of high school, as he was serving overseas.

This didn't add up. My mom was born in 1921, which would mean that she graduated from high school in 1939. And she collaborated that, saying that she began her college classes at Gustavus Adolphus in the fall of 1939. So I asked if Max had joined the service prior to Pearl Harbor. She said, no, that he had served in 1944. I wondered how he could have given her his car to use if he hadn't gone overseas for another five years. She didn't understand.

I drew a timeline with her birth, her high school years, Pearl Harbor, and Max's service. She still didn't understand that high school and Max's absence weren't concurrent.

I said that this would be like me saying that Aaron had given me a beautiful Mother's Day gift while I was in high school, but Aaron hadn't been born yet. She didn't understand, but she knew she wasn't understanding something that she should have understood. When I realized this, it was too late. She was already near tears.

I felt so badly for her in that moment. She must be aware that she's slipping, but doesn't know what to do.

I need to remember what the UCI Medical Center psychologist told me about dementia: A-R-E. Don't argue, don't reason, don't explain.

From here on in, I will simply listen to her read, maybe ask a few questions. But if she has trouble answering them, I need simply say, "Please, Mom, read more."

Rogue Waves

Gerard d'Aboville, who rowed across the Pacific in 1990, writes of brushes with death that blindsided him in his account of his journey, "Alone." Times when the weather was good and the ocean was calm, and then a wave comes out of nowhere, and he nearly loses his life.

I, too, have had some rogue-wave experiences lately, most recently Wednesday night.

I had been going along, feeling fine, blood sugar and blood pressure under control. Then a rouge wave struck. I tested my blood sugar, and it was 599. Normal is 70-120. I haven't seen a number like this in I don't know how long. I gave myself a bolus of insulin, then tested again in an hour. By then it was off the scale, somewhere above 600. More insulin, then more and more and more. Still 600. Finally, at 4 a.m., my blood tested at 199. High, but acceptable. In total, I had taken 52 units of insulin to bring my blood sugar down, more insulin than I usually take in two days. During the night, I had experienced chest pain and pressure, due to the high blood glucose, and severe leg cramps and nausea. All day yesterday I felt like I had been beaten up, hit by a rogue wave.

Today the seas are once again calm, and so I am at ease--until the next brush with death.

A Thousand Little Abandonments

Recently I read "Alone," the tale of Gerard d'Aboville, the Frenchman who at 46 years old rowed across the Pacific Ocean from Choshi, Japan, to the mouth of the Columbia River. Hard to believe, but he did it.

Throughout the book I was impressed in the many ways in which his struggle parallels mine, even though the venues are quite dissimilar.

Here is an insightful passage from his book:

"My motor is not so much my muscles, but my stubbornness, my tenacity, my loathing of discouragement, which I have to fight day after day, hour after hour, stoke after stroke, as each arc of the oars grows more difficult than the last. I am a resistance fighter in a war I invented for myself. The enemy is me, with all my physical shortcomings, my temptation to give up. That temptation, by the way, does not consist of sending up my distress signal and throwing in the towel, as one might think. It is the thousand and one little daily temptations that lie in wait for us all: to get out of bed five minutes later than usual, to stop one minute before the bell rings signaling the end of the working day; to pull a trifle less vigorously on the oar next time; even to stop shaving. These are the kinds of minor abandonments, the castings off just a little here and there, which together, ineluctably lead to the ultimate surrender. And it is these same minor, ridiculous battles, these repetitive, fastidious, inglorious battles that, if I persist, will eventually lead me to victory."

Every time I go into the PD clinic and see other dialysis patients, I come away with the message: Don't succumb to minor abandonments. The temptation to ignore healthful eating habits and just eat whatever I damn well please. The temptation to stop caring about my looks, to shun the little bit of makeup I do wear, to start donning sweat pants. My friend Heather recently quoted a comedian who said that nothing signals giving up like sweatpants. And yet sweatpants is what all the PD clinic staff recommend to hide the four-pound pouch caused by the dialysis solution that is left in the peritoneum membrane between exchanges.

All I am exposed to are dialysis patients who, in so many little abandonments, have given up. They may not see it that way, but it's clear to me. I think of the insulin-dependent diabetic who has received two kidney transplants and continues to get toes amputated yet eats Kentucky Fried Chicken, pepperoni pizza, and sheet cake with gobs of frosting. Or the woman who must weigh 350 pounds and so is confined to a wheelchair. Actually, all of the dialysis patients who attended the two support group meetings I have attended have been overweight or obese. And my friend Bob, whose father is on hemodialysis but is actually extremely thin, reports the same: patients bringing cheesecake and candy and buckets of fried chicken into the dialysis center.

I am not tempted by food, and I have enough self-worth to want to look my best, so I don't see this being the route I follow. But I must be on guard against any thought, word, or action that undermines my ability to be in absolutely top form.

By eating an organic, healthful diet; by wearing a gray wool suit or a coordinated skirt and blouse; and by projecting an upbeat look rather than the dejected, worn-out, beaten-up looks I see so often in other dialysis patients, I show to the world that I am the person who is a fantastic candidate for a kidney transplant. And if, like Gerard, I persist, I will eventually have my victory.