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Who Are the Caregivers? …..Or What I’ve Learned in Twenty-Six years. Edna L. Ballard, MSW, ACSW Duke University Medical Center Durham, North Carolina. “In sickness and in health…”.
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Edna L. Ballard, MSW, ACSW
Duke University Medical Center
Durham, North Carolina
It is a covenant we make not only with our spouses but with parents, children, siblings, and perhaps even friends and neighbors..
Profile of Caregiving in America
The Pfizer Journal Fall 1997
…Which means we do it with our heart and our head.
“…I feed Mom five meals a day…and I help her bathe and dress, and I wash her sheets, trying hard to see the woman who my daddy loved, and who gave me life, and who now lives in quiet desperation, witness to her own decline (usually, but not always with merciful disinterest.) This week she has repeatedly muttered “damn it.” softly, between coughs.‘Yes Mother, damn it, damn it’”
From the diary of a daughter caregiver
The Caregiver Newsletter, Duke Family Support Program,
“….Most caregivers are ill-prepared for their role and provide care with little or no support.”
----Family Caregiver Alliance
National Center on Caregiving
…..no wimps need apply!
“We ought not pretend that some magic bullet for dementia is on the horizon…. Such hopes may be problematic if they divert attention from the central moral task of changing attitudes and providing forms of care that attend to the noncognitive aspects of self.”
Stephen G. Post, Cambridge Quarterly of Health Care Ethics,
Vol. 4, No. 2, Spring 1995
Persons with Alzheimer’s are difficult because of varying degrees of awareness and ways of responding to the disease.Managing one’s emotions is a constant effort for caregivers.
Lela Knox Shanks
Your Name is Hugh Hannibal Shanks
“Is this written somewhere…
A patient’s response to his wife when she insisted that he wear pajamas to bed.
“Heroes aren’t the men on white horses or the people who brave physical danger. Our real heroes are “average” men and women who aren’t average at all, but rather take life for what it is and who make the most of it—for themselves and for others…”
“What distinguishes between the survivors and those who are beaten by life isn’t whether or not problems occur, but how problems are confronted.”
--Linda George, Ph.D.
Duke Center for the Study of Aging and Human Development
~~ “Let’s not wake up grandma for supper. Maybe she will starve to death.Three-year-old
~~ “We love you – ‘Just Because!’”13-year-old granddaughter
~~ “I want my wife back.” A long-suffering spouse
~~ “Why do I have to reciprocate? She was never
there for me!
~~ “She’s my husband’s Mother. She has 4 other
children! They only know my name!
~~ “I have to fight for my partner’s rights.
~~ “I can’t have Alzheimer’s, I’m only 45 yrs. Old!”
There is also the need to do everything well, often to the point of exhaustion and sometimes ill health!
The Caregivers’ Roller Coaster
Billie J. Jackson, 1993
“When we keep giving without receiving, we burn out quickly.
It is important to know when we should give attention and when we need attention.
---Rev. A. Purnell Bailey, The Herald Sun, Durham, NC. 4/23/02
“When I saw him coming toward me in wet socks and somebody else’s shoes, I thought ‘Is this what it has come to?’
I work so hard to protect him and feel betrayed by those I entrusted him to. This is symbolic of the failure of their implied contract to care for this man who was so important to us..”
Ballard, E. Alzheimer’s Disease and Associated Disorders: Vol. 13, suppl. Pp. S88-S92
“Life sends all sorts of foxes to raid the henhouse and steal the eggs.Adversity is a natural part of being human. It is the height of arrogance to prescribe a moral code on health regime or spiritual practice as an amulet to keep things from falling apart. Things do fall apart. It is in their nature to do so”Elizabeth Lesser, Broken Open: How Difficult Times Help Us Grow. 2004
“In spite of all the difficult and sad situations I have experience because of my mother’s illness, I also have been periodically presented with my own bouquet of sunflowers.”---Sylvia Hill, Zen Alzheimer’s, The Caregiver Newsletter
“Men and Masculinities”
The growing role of men caring for wives, parents, and significant others with Alzheimer’s disease.
What do they need; what are they offering?
Black Americans and Hispanics are at an increased risk for Alzheimer’s disease. What missing pieces of this puzzle might hold answers for everyone at risk?
Values and attitudes become the “cultural filter” for understanding, tolerating, or responding to a given situation. It is the basis for the tolerance of severe dementia symptoms as “normal aging” often seen in some families.
Use of service may be influenced more by class variables than by race or ethnic identity.
A new kind of outreach potential with the goal of reaching millions of people. The project consist of 4 related events: A VIP Gala , Prayer Breakfast, Health Fair/Caregiver, and the “Forget Me Not stage Play” designed to bring caregivers, politicians, and medical professionals together to provide information and education to a group previously difficult to reach.
Beth Witrogen McLeod
Caregiving: The Spiritual Journey of Love, Loss, and Renewal, 1999
There is an increasingly high quality volume of information out there for caregivers…the trick is to match the information to the caregiver’s needs at the time he or she needs it!
Gary Le Blanc, Staying Afloat in a Sea of Forgetfulness, Weekly Columnist Hernando Today (The Tampa Tribune).
Coach Boyle – Playbook for Alzheimer’s Caregivers, University of Arkansas Coach
Barry Petersen, Award Winning CBS Correspondent, Jan’s Story, 2010.
Edna L. Ballard, MSW, ACSW
Duke Family Support Program,
Joseph & Kathleen Bryan Alzheimer’s Disease Research Center
Box 3600 Duke Medical Center
Durham, North Carolina 27710
Phone: 1-800-672-4213 FAX (919) 668-0453