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…”
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
Caregiving is a relationship….

…Which means
we do it with
our heart and
our head.
 Family caregiving is difficult
because we are caring for the
person and about the person.

It’s personal!
“…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,
 “A substantial body of research shows that
family members who provide care to
individuals with chronic or disabling
conditions are themselves at risk.”

“….Most caregivers are ill-prepared for

their role and provide care with little or no
support.”

----Family Caregiver Alliance

National Center on Caregiving
“It’s not the mountains ahead
of you, it’s the sand in your
shoes day by day.”

---a caregiver
Caregiving is a journey for
heroes.

…..no wimps need apply!

 Caregiver risk factors are varied
and numerous
 Too many competing responsibilities.
 Difficult, unpleasant caregiving tasks.
 Unrealistic expectations.
 Inability to see positive changes
 Few perceived successes
 Little or no appreciation for efforts.
Risk factors cont’d
 Insufficient emotional or concrete support
 Family conflict or questioning the
diagnosis, what and how care should be
given.
 Ineffective caregiving or coping skills.
 Feeling life is unfair.
 Perception of who and what we should be.
Risk factors cont’d
 Unresolved past issues with the care
recipient.
 Fear and uncertainty over the future.
 Decreased personal time, ill health.
 “Nobody can do this but me” syndrome.
 Feelings of isolation.
 Captive of old promises.
“…Where No Techno-Fix Is Imminent”
“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
 There is an overarching ethic
suggesting that “if a thing is worth
doing, it is worth doing well.” For
caregivers, embracing this idea is like
starting a race with one leg
encumbered.
 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.
“Even in the beginning stage when I was so
enraged and resentful, feeling all alone, not
knowing what to do next. I still knew there
were logical, humane and intelligent
solutions to every problem…but I had to get
beyond that rage and self-pity before I
could see them.
Lela Knox Shanks
Your Name is Hugh Hannibal
Shanks
The Tyranny of ‘Shoulda’ and
‘Oughta’

“Is this written somewhere…

A patient’s response to his wife
when she insisted that he wear
pajamas to bed.
 So, who are the heroes?
“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…”
…real heroes?
“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
 Faces we see…
~~ “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!”
 Caregiver research consistently
show that families do a heroic job
in caring for dependent members;
this, despite being ill-prepared for
the job and often having little to no
support.
There is also the need to do
everything well, often to the point
of exhaustion and sometimes ill
health!
 It takes a team of doctors, three
shifts of registered nurses, three shifts
of nurses aides, a laundry department,
a janitorial department, a dietary
department, a lab and a pharmacy
department to do the same things a
caregiver is expected to accomplish
when a patient is discharged.
The Caregivers’ Roller Coaster
Billie J. Jackson, 1993
When do I take care of me!
“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

….sometimes, at some point, it
means letting go and letting
others…..
Wet Socks and Somebody Else’s
Shoes
“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
 New Caregiver Faces
“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?

 New Caregiver Faces

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?
 Why Ethnicity Matters
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.
 Ethnicity matters not only in
how families view health problems
but what they find acceptable in
help or solutions to the problems.
 When the Issue is not Culture:
Reality, Perception and Decision

Use of service may be influenced

more by class variables than by race or
ethnic identity.
The Forget Me Not Project
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.
 Minority families often seek help late in
the disease and at a crisis point generally
involving behavioral symptoms. Whether
the presenting problem is driving, paranoia
and suspiciousness, wandering, or severe
memory problems ,families want emotional
support and practical suggestions…. This is
not unlike the needs of most caregivers
regardless of ethnic background.
 “We live in a world of shared
information and understanding—the
challenge is not to know it all, but to
know how to know. We want to
believe that there is an identifiable
solution to every problem, that all we
have to do is hook up to some toll-free
number.”
Beth Witrogen McLeod
Caregiving: The Spiritual Journey of Love, Loss, and Renewal, 1999
 It doesn’t matter what
information is out there if you
don’t have access to it or know
what to do with it once you have it,
it is useless to you.
 The reality is….

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!
Alzheimer’s Disease – “It’s Not All Bad”

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.
Contact Information:
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
elb@geri.duke.edu
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