The Caregiver: A Life With Alzheimer's

by Aaron Alterra

When Aaron Alterra's wife, Stella, was diagnosed with Alzheimer's, she was an active 80-year-old preparing for a cello performance. The diagnosis radically altered the author's role form husband to caregiver. This account describes his attempts to maintain a connection with his wife and help her live at peace with her condition.

208 pages, Paperback

First published October 1, 1999

Reviews

[John Thorndike · Rating 5 out of 5]

My father died in 2005, after descending into Alzheimer’s. During the time I took care of him, and in the years that followed, I read dozens of memoirs about Alzheimer’s and dementia, among them excellent books by Mary Gordon, John Bayley, Eleanor Cooney and Annie Ernaux. I found Alterra's book the best of them all.

From the first paragraph I knew I was in good hands. On page five I noted in the margin, “Every paragraph is perfect.” And so it continued, one rich page after the next.

I’m always swayed, pro and con, by a book’s writing, and Alterra (a pseudonym for the novelist and short story writer, E.S. Goldman) is a gorgeous writer: observant, deft, succinct and original. He would never heap on the adjectives this way, but I will, about him. The characters are spry, the dialog subtle, the descriptions powerful, his observations pierce like a quill. What can I say? I love how he writes.

My father would never mark a book. I do though, so after I finish I can find felicitous passages or points worth remembering. I use checks, brackets and occasional exclamation points—-and after reading “The Caregiver” I went back through the entire book, counting them up. I found over 130 penciled marks.

Alterra’s scenes, of which there are many, are the lifeblood of the book. I ticked the opening of this one on page 63: “Ina Krillman’s office decoration consisted of shelves of books and pamphlets and a row of folding metal chairs arranged for a small meeting in front of a small desk that she dominated like an adult on a pony.”

I checked this, as well, about how many of the elderly will suffer from dementia: “People are living longer. If you expect to make it to eighty-five, expect also that you or your spouse will have Alzheimer’s, the other will be a caregiver. Stella and I did not beat the odds.”

The caregiver, however, can read this book—-and what a pleasure it is to do so.

[Jim Woolwine · Rating 4 out of 5]

Beautifully written. Insightful nuggets on the limits of support from the health care system and purposeful criticism of Medicaid and Medicare regulations.

Sad to realize that friends and acquaintances fade away as the illness progresses.

[JANEY MCGEARY · Rating 3 out of 5]

A book very much of the time it was written, more than 20 years ago. Alterra, a pseudonym, writes tenderly of the slow/quick descent of his beloved wife of over 60 years into Alzheimer's. Except for justified swipes at Medicare, he does not complain as much as tell.

[Abigail · Rating 4 out of 5]

This book was assigned to me for an Advanced Therapy class, and was intended to aid us in diagnosing Alzheimer's. Alterra depicts his life as a caregiver not for sympathy but to merely shed light on the realities of it. His even-keel demeanor and beautiful writing make book sentimental and easy to read.

[Jean · Rating 5 out of 5]

Written by a man who cared for his Alzheimer’s affected wife Stella at home until her death, this memoir is level headed, sensible, and sometimes transcendently loving. Its practical observations and examples would help anyone to – not “deal with”, for that implies a more rigid caregiving philosophy than the author adopts --- understand and integrate living with a person progressing through Alzheimers.

I appreciated the author’s many reasoned musings on how to honor his wife’s autonomy and rights even as her capacities dwindled. The following passage is typical: “What Stella personally retained, and retains to this day, while it is not affirmative, is a kind of veto in her area of competence: what she likes or dislikes, what she feels. In this, her house, it is her ‘right.’ She cannot say what she would like for dinner, but if food displeases her, she will turn away from it.”

I also liked the author’s meditation on “complex devotion” such as he shared with his wife, and such as writer John Bayley shared with his Alzheimer’s afflicted wife Iris Murdoch. Alterra writes, of Bayley, “Didn’t the relationship become a duty, a habit, a chore? Couldn’t he afford better alternatives?...did Bayley talk himself into a mood of pseudo-gallantry? I know that isn’t it at all, no part of it. He loved the girl. That is what love is for him. It was not a duty but a grace to be a presence to her as she was to him; to be all the memory she had; to have a hand to offer that might not be as skilled as a nurse’s but one she trusted…(near the end of his wife’s days) I understand that Bayley still had the girl he fell in love with when she rode by him on a bicycle. I fell in love with Stella in a department store when she walked by, manila folder in hand, on a mission from the personnel department…Like Bayley, I never got over it.”

[Vanessa · Rating 4 out of 5]

An honest and thorough memoir of the author's experience as a primary caregiver for his wife. The book starts off with the lead-up to the wife's Alzheimer's diagnosis, and follows the author through the first several years of her disease, and his experience in trying to learn as much as he could while being an effective caregiver for her.

[Lauren · Rating 3 out of 5]

I read this in between doing geri consults this month. I saw a lot of similarities in how my dad is caring for my grandfather and it's an interesting perspective to see how the care and attitudes towards AD changes as the disease inevitably progresses.