Happiness in the Storm of Alzheimer's Disease

You will never hear me call cancer or any other horrible disease a "gift." So how can I talk of happiness when dealing with Alzheimer's Disease (AD)?

Until I read Dancing with Rose. Finding Life in the Land of Alzheimer's, I would have said, "I can't." Not after caring for my patients with AD, a progressive neurological disorder that afflicts 4.5 million Americans annually. And not while watching the decline of a loved one due to AD.

Author Lauren Kessler is a journalist whose mother died of AD. She describes her guilt over facing her mother's illness "with a combination of fear and detachment." Hoping for redemption, Kessler decides to work as a bottom-rung caregiver at a residential Alzheimer's facility. The work is "exhausting and humbling."

Where most biographical books about various illnesses have simply validated what I'd already come to understand, Dancing with Rose delivers on its promise: It "offers a new, optimistic view on what Alzheimer's has to teach us, and is a much-needed tonic for the many people faced with providing care for someone they love."

What surprises Kessler -- and me -- is the grace, humor, and unexpected humanity (my emphasis) that are possible in the world of AD.

Kessler's perspective is realistic without a hint of Pollyannish romanticizing. I heartily recommend Dancing with Rose to anyone who is dealing with AD and/or grappling with the fundamental question: When we lose our memories, do we lose our humanity?  

Comments

[kate]

Wendy;

Thanks for the recommendation; I'd love to read this book. Watching my mother lose herself, her memories, her confidence has been heartbreaking. Daily she moves into a place farther and farther from who she was to all of us. I struggle constantly to adapt to the new normal.

[Wendy S. Harpham, M.D.]

Dear Kate,

Sorry you, too, are watching a loved one slip away.

If it's not too much trouble, after you finish reading the book it would be helpful if you could share your opinion of it. Future readers of today's post would appreciate having both our opinions.

With hope, Wendy

[Kairol Rosenthal]

I am currently living with incurable cancer and my husband and I are the primary caregivers for my father-in-law with AD. It is a handful. I love my father-in-law and while it is a challenging life taking care of him some days, I wouldn't have it any other way. He is amazing. I adore having him in my life regardless of his state of brain functioning.

I will have to read this book to understand what exactly it means to have to redeem oneself after taking care of someone with AD. Aren't the good and bad thoughts and feelings that come along with the territory of this horrible disease just part of the full range of emotions that are life?

If out of love for the job and for the patients, one decides to work in an AD facility after being a family caregiver, that is awesome. But to do so out of inner turmoil sounds to me like hell. Also as a cancer patient, I cringe when people reach out to help me as part of their own personal therapy experience rather than simply with the agenda to give me care because I need it - not because they need it.

I am of course now very curious about this book. Thanks for writing about it.

Kairol
http://everythingchangesbook.com/

[Wendy S. Harpham, M.D.]

Dear Kairol,
Yes, I believe the "good" and "bad" thoughts and feelings (for myself, I call them "pleasant" and "unpleasant" to get away from the judgmental connotations)are all part of the full range of emotions we call life.
One of my mantras as a Healthy Survivor is that it is far less important WHAT feelings I have compared to WHAT I DO with whatever feelings I am having.

You bring up an interesting point about caregivers doing it for you or for themselves.

As suggested to Kate, it would be very helpful to have your opinion of Kessler's book on this post, so future readers get a broader view. So if you have time and energy (no pressure!)

With hope, Wendy

[Carl Wilton]

Thanks, Wendy, for dealing with AD - something else you and I have in common, unfortunately. Besides dealing with my own indolent lymphoma, I'm also the caregiver for my mother, who's in the mid-stages of AD and living in a nearby retirement facility. Right now we're dealing with the heartache of trying to explain to her why she can no longer drive.

I, too, have read Dancing With Rose, and was terrifically impressed by it - not only for what it said about AD, but also for its earthy portrayal of the people, mostly women, who labor long hours for minimum wage caring for patients in nursing homes. Those who triumph over their circumstances and manage to make it more than a job are true angels.

[Wendy S. Harpham, M.D.]

Dear Carl,
Because I keep my posts under 250 words, I cut the paragraph that focused on the low-wage people who care for patients with AD. Thanks for prompting me to devote a post to it.

As for your conclusion, I could not have said it better. With hope, Wendy

[Debby]

Wendy ~ It looks like you hit a chord with this post. Many people are struggling with this issue as parents age. Something tells me I know what my Hanukah present will be. :-)

love
Debby

[Debbie Wills]

Wendy,
Just reserved the book at the library and looking forward to reading it. Now I am at a place where I can read this. As you know I struggle as I watch my mother in law decline. Sometimes at the end of a day or week of giving to others, I wonder how much more patience do I have? How much more do I have to give? And yet she is often very sweet,
telling me how much she loves me or how happy she is that we are together. I think I can understand the struggle/guilt of the author before I even read it.
My daughter worked in a nursing home for a short while and she found many of the dementia patients quite sweet and it a very meaningful experience.