Category Archives: Caregivers & Coping

Coping & Caregiving: Bittersweet Stories

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Memories — stolen by dementia, saved by family, friends, by caregivers, and by the patient — a writer — in his own essay:

As bittersweet as can be:
Couple Renews Wedding Vows After Husband With Alzheimer’s Disease Forgets He’s Married

Accepting a sufferer’s wonderful, wild story:
A Boyfriend Too Good to Be True

A family struggled to save a pianist’s music before Alzheimer’s could steal it, and a professional musician helped bring his music to life again:
HIS HEART, HER HANDS

Caring for a patient suffering from dementia means coming to terms with the frustrating paradoxes of memory and language:
The deviousness of dementia {An edited version of:} Hope Is the Enemy

Mothers, fondly and bittersweetly remembered:
Everything my mom remembers: Our love and memories, her Alzheimer’s
My Mother, Lost and Found

Terry Pratchett, fighting back:
‘A butt of my own jokes’: Terry Pratchett on the disease that finally claimed him

All the links are in Alzheimer’s > Coping & Caregivers > Coping Stories.

Public People: Brave Revelations

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Disease of most sorts has always carried a sense of shame, but dementia seems to carry an especially heavy stigma. This has lessened as more has been learned about the disease, including the fact that is indeed a disease! Moreover, this has been aided by the brave disclosures of dementia diagnoses from public figures. Here we’ve collected links to articles about a number of such figures, in no particular order.

Sandra Day O’Connor
Justice Sandra Day O’Connor announces she has been diagnosed with dementia
Sandra Day O’Connor Says She Has Dementia, Withdraws From Public Life
As she faces dementia, Sandra Day O’Connor is a pioneer again

Ted Turner
Ted Turner reveals he has Lewy body dementia
Ted Turner reveals he’s battling Lewy body dementia in exclusive interview

Gene Wilder
Gene Wilder’s widow on what it’s like to care for someone with Alzheimer’s

Glenn Campbell
Glen Campbell: His Courageous Fight with Alzheimer’s Disease (see also Review: ‘I’ll Be Me’ Is Glen Campbell’s Farewell to His Fans and Himself

Ronald Regan
Read Ronald Reagan’s Letter to the American People About His Alzheimer’s Diagnosis

Pat Summit
Fighting Alzheimer’s Disease

Charlton Heston
Charlton Heston has Alzheimer’s symptoms (also Charlton Heston’s Alzheimer’s Announcement and Goodbye)

Terry Pratchett
‘A butt of my own jokes’: Terry Pratchett on the disease that finally claimed him

Malcolm Young
AC/DC’s Malcolm Young has dementia, family says

Kathy Griffin’s Mother
Kathy Griffin reveals mother’s diagnosis
Kathy Griffin Reveals Mom Maggie Has Dementia In Heartbreaking Post

A related article:
Dementia Is Getting Some Very Public Faces

Very Sweet Coping Story

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Here’s the story of an Alzheimer’s sufferer who forgot that he was married to his wife of 38 years. He proposed to her, she (smartly) accepted, and they were married again:

Husband with Alzheimer’s forgot he was married to his wife of 38 years. He proposed, and they married again.

The link is in Alzheimer’s > Coping & Caregivers > Coping Stories

Alzheimer’s Coping Stories Update

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Greg O’Brien was diagnosed in 2009 with early-onset Alzheimer’s. He has written a book about his experiences (On Pluto: Inside the Mind of Alzheimer’s), appeared in a short documentary film (see Learning to Live and Progress with Alzheimer’s ) and wrote the following short piece in Nautilis:
     A Look Through the Eyes of Alzheimer’s
The piece Alzheimer’s Bring Other Health Problems With It, from NPR in June of 2017, is an extended interview with Greg describing some of the difficult personality side-effects of O’Brien’s (and most sufferer’s) struggle with Alzheimer’s.

Sandy Bem was a 65 year-old Cornell psychology professor when she learned that she was suffering the onset of Alzheimer’s. This article, The Last Day of Her Life recounts the several year process of arriving at the day she ended her life with a glass of pentobarbital, with all of her family surrounding her.

In 2012, 69 year-old Geri Taylor saw the beginnings of the onset of early Alzheimer’s in herself. This piece,
Fraying at the Edges: Her Fight to Live With Alzheimer’s, follows her for the next 3 years as she finds ways to hold on to pieces of herself and to construct a new way to live.

Steve Goodwin was a gifted pianist and improvisational composer who never wrote down or recorded his compositions. Early onset Alzheimer’s began robbing him and his family of his music. This piece,
Family struggles to save pianist’s music before Alzheimer’s can steal it, describes the ensuing years and how his family and a professional musician friend of his daughter worked to save his music. The effort culminated in a packed public concert of the music.

Sandy’s Story tells the story of Sandy Halperin and the first four years of his early onset Alzheimer’s. After Alzheimer’s diagnosis, ‘there’s still a good life’ updates that story to the present.

AC/DC’s Malcolm Young has dementia, family says announced that Young was suffering from dementia. Sadly,
AC/DC co-founder and guitarist Malcolm Young dies at 64
announced that he has died.

All the links can be found in Alzheimer’s > Coping and Caregivers > Coping Stories

Dementia: Hope & Despair for Patient & Caregiver

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Dasha Kiper has written a remarkable long piece about her year plus caring for a dementia patient. A shorter form was published as The deviousness of dementia while the longer version appeared as

Hope Is the Enemy: Caring for a patient suffering from dementia means coming to terms with the frustrating paradoxes of memory and language.

 
Links to both versions have been posted on Strong Brain in both
Alzheimers > Caregivers and Alzheimers > Coping Stories

More Links About Coping

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More stories of coping on

Alzheimers > Coping Stories

The new links are:

Everything my mom remembers: Our love and memories, her Alzheimer’s When my hippie, playful mom was diagnosed with Alzheimer’s, our family was what really changed

Slipping Away Jo Aubin has Alzheimer’s. He’s 38.

Tableware designed for Alzheimer’s patients …Eatwell, an assistive tableware set designed specially for patients with cognitive impairments like Alzheimer’s.

New Links in Alzheimer’s Caregivers & Coping

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In Alzheimers > Caregivers:

When his father had Alzheimer’s, Jonathan Kozol learned how bleak gerontological care can be     “Good god, what happens to people who don’t have the advantages we had?”

In Alzheimers > Coping Stories:

My Mother, Lost and Found     Mom’s private caregiver, Ellen Knapp, has a term for this type of behavioral change: disinhibition

People Living With Alzheimer’s Can Still Enjoy Life     Almost all people with dementia, even those in the later stages of the disease, can enjoy life if they have the right support and environment.