Mom in a more dignified moment, summer of 2018, dressed for her granddaughter’s wedding.

On Sanctity of Life: What Shall be Sacred?

Making sense of Alzheimer’s and the search for dignity in death.

It’s been six days since I returned from a visit to my Mother, three time zones away. I didn’t know how to write about it, and I thought I never would, until I read Stefanie Bruun Fitz-Gerald’s article from June 2018 ‘In the Shadows’ about Alzheimer’s. Because I never thought my Mom Is A Movie Star, like Dan Moore. Until now.

Mom is dying.

Slowly.

Of dementia.


There were two highlights to my visit. The first was when she recognized me. She couldn’t say my name. She couldn’t communicate anything in words, but her face came alive and she reached her arms up from her wheelchair and she hugged me with every ounce of recognition her body could muster.

In that moment, she knew who I was.

The other highlight of the trip was a picture book my Aunt made for my Mother. It was titled ‘(Tom’s Mother): This is Your Life’ and it had childhood photos, family photos, wedding pictures, newspaper clippings… lots of stuff I’d never seen before and some that I had.

We read it together, like I used to read to my kids when they were so little. Mom looked at the pictures and pointed and sometimes she recognized some of the words.

I turned the pages.

There was Mom as a little girl in the 1940’s. She was born at the end of the Depression, just in time to become conscious during the War. One of three kids at first, then three more. She counted herself lucky back then, because she was told Grampy wasn’t going to be called to fight. He was too old, I think, or maybe he had too many mouths at home to feed.

I understand a little better why my sisters and I were raised on home-canned rhubarb, powdered milk, organ meats, peanut butter, and an awful corn syrup concoction called Lemon Blend.

Mom was a child of privilege and deprivation at the same time, and now I can see it in her picture book, right there in black and white.

I still love rhubarb. Mom used to say, “You can’t kill it in the garden, you can’t ruin it in the kitchen.” Tough vegetable, I guess.


There’s Mom again, in High School now. Of course she was Captain of her swim team. She set a state record in the backstroke, she told me years ago.

“Well… tied it really,” she would say, “And Maine isn’t a very big state.”

OK, Mom.

She was married in 1963. There she is, climbing out of the VW microbus that carried her to her wedding.

Mom in 1963, arriving to at her wedding in the iconic symbol of the folk-singing 60’s: the Volkswagen microbus.

There’s Grampy.

Holy shit, in that old photo… how could he be only a year older than I am now? He looks ancient to me, and there he is marrying off his oldest daughter.

They all thought she was taking her good, sweet time finding a husband, too — already 26 years old.

Not many family pics from when I was a kid, but there’s no doubt Mom was pretty. She never knew it.

My sister in my Mother’s arms, on display for the newspapers covering an Air Pollution Commission hearing back in 1969.

There’s the newspaper photo of her with my younger sister, as an infant, at the air pollution commission hearings.

Mom… always the activist.

If you were raising three kids in Pittsburgh in the late 60’s, I’d hope you would come to the air pollution hearings, too. The paper made special note of the fact that “Mrs. Seager was unable to engage a babysitter.”

Where was Dad? Watching me?

Wait a second… fuck that.

Damn right she’s going to bring her baby. That’s her whole reason for attending in the first place.

Clever Mom.

Babies have been used as political props since… forever. Except now she’s not offering hers up for some politician to kiss, she’s getting newspaper coverage for her cause.


It was Mom who taught me,

A thing worth doing is worth doing badly.

Nobody understands Mom.

I was a pre-pubescent teen at the time. (A late bloomer). Mom was at the dining room, talking to a group of women about political action and the necessity of getting more women candidates on the ballot in the local elections.

The women said, “Oh, we don’t know how to do that!”

Mom wasn’t having it.

“There are some things that are so important,” she said, “that we have to try, even if we don’t know how to do it right.”

See?

That’s all she meant. That some things are so important, you have to be willing to learn how to do them by failing — at least at first. Mom understood that it doesn’t matter how failure makes you feel, because you aren’t doing this to make yourself feel better. You’re doing it because it is so important.

Why couldn’t she have just said it like that?

Mom preferred a little shock value, I guess.


Lots of fast forward, until we get to last summer.

Wedding photos again, but this time it’s her oldest granddaughter getting married. My niece. My sister’s daughter.

There’s Mom, dancing.

She was already in the throes of dementia, but you wouldn’t have known it by looking at the picture of her dancing with the groom. Her new Grandson-in-Law.


Mom took a turn for the worse a few weeks ago. Her last cogent moments are behind her. Maybe it was a stroke, maybe it was side effects from her medication, maybe it was none of those things.

We finished her picture book and I got my phone out to show her the short film her granddaughter Emma Seager made for class. It’s called Rosa’s Piece and it’s about anxiety and ego, and getting over yourself.

Because…

“Remember Mom? How a thing worth doing is worth doing badly?

“This is the movie your granddaughter made about performance anxiety. She’s so brave.

“Except she’s says it a little bit differently from you. Her motto is, ‘Let’s go fuck this shit up!’, because you know… I raised a foul-mouthed Millennial.

“You can be very proud.”

Mom’s eyes closed and her head nodded off.

A 5 minute short film is too long for her now. Whatever sort of dope hit/adrenaline rush brought her to life a few minutes ago had passed, and she fell asleep.


The doctor says it might be four years, it might be four months.

In the meantime, she can’t sleep straight in the bed. She can’t feed herself. She abuses her caregivers, lashing out at them, yelling at them, resisting their care. She can’t use the toilet by herself. Nothing gives her solace except classical music.

She has so little peace.


In Being Mortal, Atul Gawande (2014) chronicles the shortcomings of the customs, policies, and practices in the United States with regard to end of life. He contrasts the US with other cultures, most notably India, with which Gawande has experience through his family.

But there were no answers in his book for me, my sisters, or my Mother.

I’ve been thinking about Jonathan Haidt’s Moral Foundation Theory, and in particular the principle of sanctity.

Although we all get told a story about the Hippocratic Oath and medical ethics, the fact is that the oath is a dramatization. The American Medical Association (AMA) publishes a Code of Ethics, just like the National Society of Professional Engineers does for engineers.

Here’s the very first thing in the AMA’s Principles of Medical Ethics.

I. A physician shall be dedicated to providing competent medical care, with compassion and respect for human dignity and rights.

That’s what my sisters and I have decided our Mother would have told us she wanted at the end of her life: dignity and rights.

And her dignity, along with her mind and her freedoms, is gone.

I no longer believe that the most fundamental sacred principle is the quantity of human life. My experience with my Mother, and my reading of Gawande’s book, has convinced me that the dignity of human life is the higher moral principle.

My Mother believed in things. She believed that, as human beings, we have the right to clean air and clean water, and to equal treatment under the law regardless of our race, gender, sexual orientation, religious beliefs, or social status.

These things were so important to her that she was willing to risk her own humiliation to advance her beliefs on my behalf, on my sister’s behalf, and on behalf of those whom she believed were oppressed or disadvantaged.

To her, personal dignity was a lesser moral principle than fairness, justice, sanctity of the environment, or other causes. So she marched, and rallied, and suffered the criticisms and ridicule of her political opponents… and sometimes she suffered withering critiques from my Father’s prodigious but narcissistic intellect.

She spent her career (her life) trading her own dignity for other’s civil rights, because to her it was the only dignified choice.

And now both her dignity and her rights are gone.

They cannot be restored by edict of the court, or by medicine, or by technology. Her brain has irrevocably failed her.

What shall my sisters and I do in her service? How shall we repay our debts to our Mother?

It is not by allowing her to writhe in the agony of Alzheimer’s, fortunate in her most lucid moments only to realize how far her faculties have degraded.

I pray for her to find peace now, even though I know the only peace for her will come in death. She’s a religious woman and I don’t think death frightens her anywhere near as much as life does. I believe she has faith that her Lord will restore her dignity and her freedoms when she passes to the Kingdom, and I cannot bring myself to be so selfish as to want her to continue in this life for satisfaction of my own fantasies of a few more cogent moments.

While we wait, my sisters and I will organize our medical and other care decisions on her behalf around this principle of maintaining what little dignity remains.

She does not like her pills. She spits them back out at the nurse who tries to force them down her throat.

Mom and Dad bump wheelchairs. When she lights up for a moment, he wants to talk with her again about music and books and ideas and politics and satire. But she’s like a mirage to him — a false oasis in a desert of dementia. He comes away disappointed, but willing to try again later.

We have discontinued her medications.

What does a woman in her condition need Lipitor for, anyway?

To hell with her cholesterol. I will not have my Mother lose a power struggle over what she will or will not do with the little remaining agency she has over her own bodily integrity.

It is not dignified.

. . .

I spoke with my sister about the picture book our Aunt made.

I said, “If someone made a book for me titled Thomas P Seager, PhD: This is Your Life I’d say, “Fuck you! I haven’t finished my life.”

That was just before I realized that Auntie had it right. The book was my Mother’s life, and there were no more pages left to add.

We didn’t want any more pages, anyway. The causes for which she risked her own humiliation and ridicule are mine now, and my sisters, as we have come to understand them.

It is time for her dignity to be restored.


StoryGarden

Stories that make sense of the complex human experience

Thomas P Seager, PhD

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StoryGarden

Stories that make sense of the complex human experience