Monday, January 18, 2010

I still do: Loving and Living with Alzheimer's Dementia

Judith Fox is a writer and photographer based in Southern California. Eleven years ago, having just been married to Dr. Edmund Ackell 3 short years, Judith's multi-talented husband was diagnosed with Alzheimer's disease. This strong, intelligent man, who has been a surgeon, pilot, artist, athlete and president of Virginia Commonwealth University is now the subject of Judith Fox's book "I Still Do: Loving and Living with Alzheimer's Dementia" published by powerHouse Books in Oct. 2009.

She says in an interview posted on the powerhouse website, that as a photographer, taking pictures of him was another way of loving him. In fact, it allowed her to see him more clearly.

I am always on the hunt for photographic memoirs centered around end of life issues, and this book certainly captures end of life themes. The book is 128 pages, with intimate photographs of her husband and thoughtful insights by the author to accompany the images.

Judith writes, "Alzheimer's doesn't announce itself with an ache, a pain, a limp. It rolls in like a fog. It dissipates. It leaves space for denial."

How often I hear this when speaking with families whose loved ones are in the end stages of dementia. "When did the symptoms start?" I'll ask, and always there is a hesitation. It is a fog, so gradual and faint at first, most don't even notice it's presence.

I find this photograph from the book extremely poignant when coupled with Judith's words. The illusion is as if the rest of the "real" Ed has vanished, with only a hand remaining. Next to the photo she writes that dementia, "Unveils the person we married and then replaces him with someone who doesn't know our name".

There are tender moments captured, where Ed sleeps with their cat, or rests in a chair. But there are also photo's that you see in his eyes a question. As though he is not quite sure what's occurring, or even who the photographer is.

She is very honest in her accounts as caregiver. I particularly resonated with her thoughts on delirium. She writes, "Who thought up the innocent-sounding euphemism 'sun-downing' to describe the anxious and erratic early-evening behavior? Let's be honest, here. How about 'howling at the moon'? How about 'clawing at the walls'? How about the 'twilight zone'? 'Sun-downing'? PLEASE. "

Overall the book places a soft focus on a devastating disease. Although honest in her account, one walks away with the feeling of her love and commitment to this man, instead of feeling doomed and exhausted from the disease. I suppose that's why the title is "I Still Do".

To see more photos, you can check out a series of 13 of the photographs located at Judith Fox's photography site here. To hear the author speak and read a few passages go to the powerHouse website here.

6 Responses to “I still do: Loving and Living with Alzheimer's Dementia”

judith fox said...
January 18, 2010 at 5:51 PM

Thank you so much for your beautiful and sensitive review of my book "I Still Do." I deeply appreciate the degree to which you understand my work—and the love I have for my husband.

Judith Fox. www.judithfox.com


Paula Jacunski said...
January 19, 2010 at 4:32 AM

Thank you for posting this. Fox's pictures are beautiful. They are a testimony to her strength that she sees the person within the outward being of Alzheimer's; not an easy thing. Caring for a person with Alzheimer's, or any dementia, truly challenges your abilities to be kind and patient.


Erin said...
January 21, 2010 at 9:25 PM

As a music therapy student and a student affected by the physical challenges that come along with cerebral palsy, I can confidently and assuredly say that writing, as with any creative art, is therapeutic in its own right. As Fox so eloquently demonstrates, we learn that her love for her husband surpassed her concern that he was affected by his battle with Alzheimer's dementia.

Again, as a student in allied therapy, it is very real that arts, and especially creative arts such as music, writing, and crafting, provide an outlet for those who are grieving, and often times, the provision of support extends to the patient as well as his or her loved ones.

Applause is due to Ms. Fox for her poignant work.


ann said...
February 9, 2010 at 8:35 AM

Thank you for this beautiful posting. It's reminding me to pause and and really look at all of life in a much more poetically beautiful way.


ann said...
March 16, 2011 at 11:54 PM

Thank you for this beautiful posting. It's reminding me to pause and and really look at all of life in a much more poetically beautiful way.


Paula Jacunski said...
March 16, 2011 at 11:54 PM

Thank you for posting this. Fox's pictures are beautiful. They are a testimony to her strength that she sees the person within the outward being of Alzheimer's; not an easy thing. Caring for a person with Alzheimer's, or any dementia, truly challenges your abilities to be kind and patient.