Alzheimer’s and Dignity
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Alzheimer’s and Dignity
Mom with a View

Alzheimer’s and Dignity

Seeing the human being inside the shell.

by

A few years ago I went to an 80th birthday party for my friend’s mother. It was held at an elegant restaurant and she was celebrating this milestone amidst a crowd of well-wishers. The only blemish on this lovely day was that the guest of honor had dementia.

Not only did she not recognize anyone there, including unfortunately her daughter, the hostess, but her experience of life had narrowed to the material. I watched her slurp her spaghetti, bib at her chin, sauce running down her face – and I wanted to cry. It wasn’t just the tragedy of Alzheimer’s; it was the horror of a once poised, friendly and dignified human being reduced to infantile behavior – and in public view.

I was reminded of this painful scene when I read one of the tips from Letty Cottin Pogrebin’s new book, How to Be a Friend to a Friend Who’s Sick:

“Don’t infantilize the patient. Never speak to a grown-up the way you’d talk to a child. Objectionable sentences include, “How are we today, dearie?” “That’s a good boy.” “I bet you could swallow this teeny-tiny pill if you really tried.” And most wince-wroth, “Are we ready to go wee-wee?” Protect your friend’s dignity at all costs.”

And your mother’s. Or your father’s. They have so little of it left. But we need to keep seeing the human being inside the shell. Just as, with adolescents, we need to see past the defiant, hostile exterior to the scared small child inside, so too we need to look beyond the memory loss and diapers and other infirmities to the (once vibrant) human being trapped within. That person deserves to live out the remainder of his or her life with their dignity intact.

And it is our job – their children, their spouses (God forbid), their friends, to make sure it happens.

We have a mitzvah to honor all creation. How much more so those we love, those who have loved us in return, those in need.

We are very careful to treat the body with respect after someone passes away. Surely this applies double to the person while they still live.

When my father had Alzheimer’s, my mother spent her days with him at the nursing home. She made sure that the staff treated him as a human being and not as an inanimate object. She rewarded his caregivers to encourage this attitude because, despite their name, many of these low-wage workers are not at all caring (although there are some who are absolutely wonderful!) and completely miss the tzelem Elokim, the image of the Almighty that resides within this damaged mind and body.

The experts say that you shouldn’t keep correcting an Alzheimer’s patient. It makes them quite agitated. Perhaps it’s because they too are trying to hold on to a shred of dignity, that somewhere in their confused brain they recognize that they are not being treated with respect.

But Ms. Pogrebin takes it further. Her prescription applies to all patients, no matter the diagnosis.

We don’t forfeit our humanity when we enter a hospital (although the institutional nature of the environment certainly encourages that) or are struck with an illness.

But we do lose so much. Our lives are irrevocably changed. Let’s make sure we and those we love don’t have to sacrifice their dignity as well.

Published: April 20, 2013


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Visitor Comments: 15

(13) Shari (Zissie) Gitel, April 30, 2013 8:06 AM

In Their Shoes--experience the frustration of dementia and see how you act

My husband and I have a non-profit organization called In Their Shoes R.A. to raise awareness of the need for compassionate and dignified care for those who are dependent upon others for their daily needs. Among other things we conduct the Virtual Dementia Tour (TM) for caregivers, be they family members or staff at institutions, and other involved in providing for the needs of these patients. We are located in Israel, but the Virtual Dementia Tour (TM) is available throughout the USA as well. Once you experience the difficulties of coping with all the obstacles faced by these patients, you become more understanding and caring. I highly recommend it. Our website is www.intheirshoes.org.il and the Virtual Dementia Tour Kit (TM) can be purchased through Second Wind Dreams in the USA. May we all treat others with the respect they deserve.

(12) Teresa, April 28, 2013 4:09 AM

in agreement

I understand where everyone is coming from, my grandmother had alzheimers and ran away several times. she would get up when it was still dark and have herself an adventure. It was quite an adventure for the family in looking for her since we all live in a rural community and she would often end up at a neighboring ranchers place. We cared for her until the last two weeks of her life, where she ended up dying from something else unrelated. Now my father has dementia, and it is increasingly difficult to care for his needs. He wears my mother out, and she has been looking into a care facility. Her worry is that he will deteriorate rather quickly without the stimulation of constant family interaction. All of us kids help as much as we can, but there are just some things we don't do in respect for her wishes. We offered to get an inhome aide to assist her but she is reluctant to do that. It is a hard decision to make.

(11) Rebecca, April 26, 2013 12:40 AM

What a beautiful and important message. Dignity is so important. In addition to the way we speak to the person with Alzheimer's, one should know that many of these patients are put on so many drugs that it exacerbates their conditions. One important breakthrough that is not getting enough publicity, is the healing and miraculous power of coconut oil which has been found to help reverse alzheimers and improve memory. Buy it at the health food store and two tablespoons a day is what is recommended. Hope this info will help somebody!

(10) JG, April 25, 2013 11:19 PM

Thankyou

Thankyou. My husband has frontotemporal dementia. I found this article helpful and will remember it as he deteriorates.

(9) anonymous - Jerusalem, April 25, 2013 5:58 PM

This is dignity?

Though I can appreciate that the daughter has such a love for her mother that she made her this 80th birthday party, and that this devoted family came, yet I'm not sure if this was really showing her respect. You wrote, "it was a horror...reduced to infantile behavior..in public view"..

It seems to me that this was really against her personal dignity, to be on public display like that. Even if you think that she might have realized that this party was for her, it could be that a small gathering in her daughter's house and a few relatives coming in to say mazel tov also would have made her happy, without causing her such embarrassment, even if did not realize it..

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