Who Are the Caregivers? …..Or What I’ve Learned in Twenty-Six years

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.

Familycaregiving 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 ```~~~```~~~```~~~```

Who Are the Caregivers? …..Or What I’ve Learned in Twenty-Six years