“The Soul of Care: The Moral Education of a Husband and a Doctor” (book review)

This is a review of a new book “The Soul of Care: The Moral Education of a Husband and a Doctor” by Arthur Kleinman, MD, a psychiatrist and anthropologist at Harvard.  It is about the “stressful, harrowing, depressing, and rewarding” aspects of caregiving for a spouse with early-onset Alzheimer’s Disease.

Excerpt from this article:

In his new book, [the author] chronicles the harrowing decade he spent caring for his wife, Joan, after she was diagnosed with early-onset Alzheimer’s disease in her 50s.  He describes the process of navigating a health-care system that seemed to offer plenty of clinical care but little compassionate care as she declined from a lively, witty Sinologist to a woman unable to see, dress herself or recognize loved ones. In moving detail, Kleinman tells the story of a husband trying to honor, in the best way he could, his wife’s ultimate wish: “I will not die without dignity.”

You can read the full article here:

www.washingtonpost.com/health/caregiving-for-a-sick-loved-one-can-be-stressful-harrowing-depressing–and-rewarding/2019/09/27/dbb41cf4-c918-11e9-a4f3-c081a126de70_story.html

Health
Perspective
Caregiving for a sick loved one can be stressful, harrowing, depressing — and rewarding
By Dhruv Khullar
September 30, 2019 at 6:00 a.m. PDT
Washington Post

Robin

Eleven things “they don’t tell you about dementia” (Dementia Journey)

When Laurie Scherrer was diagnosed with early onset Alzheimer’s and frontotemporal dementia, she was told several things by doctors, including advice that she should get her affairs in order.  She writes about the eleven things she wished the doctors had said, including the idea that she could reduce confusion and agitation by observing triggers.

dementiajourney.org/2018/07/10/5589/

Anosognosia – lack of awareness (not denial) of one’s own dementia

This short article from Next Avenue (nextavenue.org) is about anosognosia, or the lack of awareness of one’s own dementia.  This is not denial but being unaware.  “This lack of awareness can cause major stress and heartache for caregivers.”

Here’s a short excerpt:

Both of Kathy Kling’s parents, who are divorced, have Alzheimer’s. Kling recently talked with her mother, Karen Kelly, about her father’s disease. “Oh, I hope I never get it,” her mother replied.  She was diagnosed six years ago.

The full article is here:

www.nextavenue.org/parent-doesnt-recognize-dementia/

When Your Parent Doesn’t Know He Has Dementia
It’s a common aspect of the disorder, but tough on caregivers
By Emily Gurnon, Health & Caregiving Editor
Next Avenue
March 28, 2018

Robin

 

“In Oregon, pushing to give patients with degenerative diseases the right to die”

Here’s an excerpt from yesterday’s article in The Washington Post about the efforts in the state of Oregon to allow patients with degenerative diseases the right to die:

“People with Alzheimer’s, Parkinson’s, Huntington’s, multiple sclerosis and a host of other degenerative diseases are generally excluded from the Oregon [medically assisted suicide] law.  This is because some degenerative diseases aren’t fatal. People die with Parkinson’s, for example, not because of it. Other diseases, such as advanced Alzheimer’s, rob people of the cognition they need to legally request the suicide medications.” 

Some in Oregon are considering changes to this law or a new law that would allow people who do not have dementia to say that they do not wish to be spoon-fed if they do develop dementia.

Here’s a link to the article:

www.washingtonpost.com/national/in-oregon-pushing-to-give-patients-with-degenerative-diseases-the-right-to-die/2018/03/11/3b6a2362-230e-11e8-94da-ebf9d112159c_story.html

“‘Therapeutic Lying’ and Other Ways To Handle Patients With Dementia”

A family in the local support group has been struggling with their loved one’s delusions.  I suggested “white lies,” which made the family uncomfortable.  I found this 2004 article from The Wall Street Journal (wsj.com) offering three approaches for families to communicate with family members with dementia — therapeutic lying, Aikido, and validation therapy.  These approaches all “require the caregiver to give up trying to force the dementia patient to accept reality, and surrender instead to the fact that the patient is living in another mental and emotional world.”

Here’s a quick example of the three approaches.  “For instance, if Mom insists that she and her long-dead friend Mavis are going out dancing, here are some possible responses:”

* Therapeutic lying: “Mavis won’t be here until later, Mom. Let’s go to the mall for a while and take a walk.”

* Aikido: “I can see you miss having outings with your friends. I share your frustration. The senior center is offering waltz lessons. Would you like to sign up?”

* Validation Therapy: “You wish you could go out dancing again. I remember how beautifully you used to dance. What was it like to go out dancing with your friends? Isn’t that how you met Dad?”

Here’s a link to the full article:

www.wsj.com/articles/SB110012626318870633

WORK & FAMILY
‘Therapeutic Lying’ and Other Ways To Handle Patients With Dementia
By Sue Shellenbarger ([email protected]), Staff Reporter
The Wall Street Journal
Updated Nov. 11, 2004 12:01 a.m. ET