Caregiver’s Corner: Zen and the Art of Caregiver Maintenance

To put this week’s “Corner” in context, you might want to check out this touching news story first. (No worries if you’d rather not: you’ll still get the idea. But it’s a really nice article.) 😉Then come back and we’ll keep going: How Poetry Helps Dementia Caregivers Find Shelter from the Storm (KQED)

I’m doing a different kind of “Corner” this week, inspired by this article. It’s a little more personal and conversational. It’s probably a little more philosophical. At the end of the section, I’m attaching a poll: love it or hate it? Let me know.

Good poetry has always made me go weak in the knees, and this one really punched me in the gut, both for Matsue — the mother who was afraid to forget how to write her name — and for the daughter, Frances Kakugawa, who bore witness to her mother’s struggles.

“Twenty-two thousand attempts/to save herself from the thief/who was stealing her name.” I think of my own mother’s apartment, cluttered with sticky notes telling her what was in every drawer and cabinet. Notes stuck on the inside of the front door reminding her what she had to do today. She knew there was a thief in her home, stealing from her as well.

I love, too, that she sees that small thing — her mother writing her name — and identifies it as the large thing it really is: writing her name 22,000 times isn’t just an effort to hold on to a skill, but rather an effort for Matsue to hold on to Matsue.

What Frances Kakagawa really captures here is two forms of self-care and coping. Matsue copes by writing her name. Daughter Frances finds her solace in writing a poem, as have I from time to time.

Here’s the mistake that I think most of us make with self-care: we confuse it with a vacation or an escape. However, truly caring for ourselves means looking inward. Self-care isn’t a distraction from our problems, and I think that’s why most of us tend to do a bad job with it.

Grief won’t go away if we refuse to look at it for long enough. If we slam the door in it’s face every time we see it on our stoop, that just means that our efforts to keep it out will also keep us trapped inside.

There’s a famous saying in Alcoholics Anonymous: “you’re only as sick as your secrets.” As we see in this article, you don’t even have to tell your secrets to another person. Tell them to the notebook page, or swear your cat to secrecy and tell her everything! Telling, admitting, and acknowledging what has been unspoken is a kind of transformative magic.

15-century Zen Master Ikkyu Sojun wrote the following two-line poem:

I'd love to give you something
but what would help?

It’s a good question. What would help? That rascal Ikkyu — and he was very much a rascal — seems to be asking this question on the grand scale. What could we give to another that would soothe their grief and calm their souls? How could we help the ocean pull back the tsunami?

I’d love for this article to help you, but you’d be better off putting this down and writing a poem for yourself. I’d love to give you something, but what would help?

If you’d travel just a little further with me, I’d like to share my favorite poem with you. It’s also by Ikkyu:

Hearing a crow with no mouth
Cry in the deep
Darkness of the night,
I feel a longing for
My father before he was born.

Ikkyu’s enlightenment experience is said to have come when he heard the call of the crow while meditating in a boat on a lake. If he is recalling that moment in this poem, note that even enlightenment did not settle the yearning that we all face. He still feels longing for something so large that it can only be described in opaque metaphors by a crow with no mouth to call out to him.

When we speak in Zen about someone “before he was born,” that is generally a reference to what might be called “essential nature.” The easiest way to put it might be to say that it’s where you were before you were born. Where were you before you existed? In the chain of cause and effect that kicked off the universe billions of years ago and brought you to this newsletter today, where did you come from and who are you really?

Heady stuff, right? But for me this poem cuts perfectly to the heart of the matter. When I talk about self-care, who is this Self I’m talking about? What could someone else give me that could help? The crow might call out to point the way, but it can’t sit on the meditation cushion for Ikkyu, or for me.

The crow didn’t enlighten Ikkyu. Perhaps, however, our feathered friend was a kind of caregiver to him. We might imagine that the crow saw what Ikkyu needed in order to realize for himself. “Caw!” What an excellent teacher.

Would You Like a Different Perspective?

📰 This Week in Dementia News 📰

• FDA endorses first-of-its-kind blood test for Alzheimer’s disease (Washington Post): this is BIG news. The Lumipulse test could radically change the way we detect and diagnose Alzheimer’s disease. The question before us now may be, do we really want to know?

• Could just sitting around increase your Alzheimer’s risk? Scientists say yes (The Independent): this is another study that has received a lot of press this week. About a decade ago, people started saying that “sitting is the new smoking” after studies were released about the negative effects of being sedentary. Now too much sitting is also being linked to Alzheimer’s disease.

• New ‘Real World’ Data on Lecanemab [Leqembi] Side Effects for Alzheimer’s (Medscape): Good news! Patients with early Alzheimer’s disease who initiated Lecanemab treatment at a specialty memory clinic showed an expected and manageable side-effect profile, new research showed.

• The Human Brain’s Fatal Flaw: A New Look at Alzheimer’s Origins (SciTechDaily): Although aging in all primates involves structural changes and shifts in brain proteins, only humans develop the toxic protein accumulations that drive Alzheimer’s. Why are we different from other primates? Could our greatest strength be responsible for this terrible weakness?

• Anti-Inflammatory Diets May Help Reduce Risk of Alzheimer Disease–Related Death (AJMC): I’m seeing a lot of research lately on the benefits of anti-inflammatory diets for the reduction of Alzheimer’s disease risk. Although this article doesn’t mention specific diets, the Mediterranean diet comes up often as a good choice.

• A Neurologist’s History of First Known Alzheimer’s Patient Auguste Deter (Being Patient): let’s close up our news of the week with some history. Born in 1850, Auguste Deter was the first person diagnosed with what came to be known as Alzheimer’s disease by Dr. Alois Alzheimer. When Alzheimer would ask her questions about her condition, she would sometimes respond “I have lost myself.” When she passed away in 1906, Alzheimer identified during an autopsy the telltale brain shrinkage and plaques that are a hallmark of the disease.