Caring for the Caregiver

The man in this photo might need a caregiver's help, or he could be the primary caregiver for a family member. Thousands of families open their homes to chronically ill and simply lonely family members. It's a gesture of love and commitment, but care giving can bring emotional hardships as well as rewards. Even the most loving relatives can feel burned out after months or years of providing care in their homes.

The man in this photo might need a caregiver's help, or he could be the primary caregiver for a family member. Thousands of families open their homes to chronically ill and simply lonely family members. It's a gesture of love and commitment, but care giving can bring emotional hardships as well as rewards. Even the most loving relatives can feel burned out after months or years of providing care in their homes.

In a typical scenario, an older relative reaches the point where she simply needs someone to be with her most of the day. A stroke, Alzheimer's, cancer, serious surgery, and other conditions may factor into the person's need. When recovery is relatively certain, it's not as difficult to take on and maintain a caregiver's duties. But looking at years of providing the most personal of services, a caretaker will need support from other family members, neighbors, and the community. In her book, Helping Yourself Help Others: A Book for Caregivers, former First Lady Rosalynn Carter shares her personal experiences as well as those of dozens of caregivers throughout her community in Georgia. Helping Yourself is written in a most dignified and empathic way, yet Mrs. Carter is not above recommending pounding nails, blaring a car stereo while screaming, or, more quietly, meditation as emotional outlets when things get to be too much.

The library owns other books for caregivers which have helpful suggestions on ways to cope better with difficult situations. Click here for a list of titles which may be reserved for pick up at a local branch.

Changing Family Roles

Sometimes there's the question of who will be the primary caregiver in a family. Statistically speaking, unless a spouse is ready and able, it's most likely to be a daughter who lives close by. She's probably part of the "sandwich generation," caught between raising a family of her own and providing care for an aging parent. What about the other brothers and sisters? If they give no help whatsoever, the caregiver will naturally resent them. One possible solution is to have an agreement as soon as the parent's circumstances have to change. If siblings live too far away to provide daily or weekly in-person help, they should be able to help with finances, whether for medication, food, or someone to come in and give their sib a few hours of well-deserved time off each week.

Finding Community Support

Support groups for families dealing with specific illnesses can be a lifesaver to the caregiver's peace of mind. In such a group, it's perfectly all right to air your frustrations with caregiving and ask questions which may improve your quality of life as well as your loved ones'. Your local library, hospital, or agency for the aging may be able to connect you to these groups and also give invaluable information on services, such as Meals-on-Wheels and special transportation, which can make your family's routine easier.

Stories from Caregivers

These true family stories show the priceless lessons in humanity which can be learned during difficult caregiving experiences.

The Family on Beartown Road: A Memoir of Love and Courage by Elizabeth Cohen.
"Nine weeks after Daddy arrived, Shane decided to leave us. He said he had to go because I was angry too much. And because it was so stressful, taking care of Ana and Daddy."
So Elizabeth spends the winter in snowy, rural New York, watching and wondering as her father loses his memory to Alzheimer's just as her new daughter's mind is developing.
Where Did Mary Go? A Loving Husband's Struggle with Alzheimer's by Frank A. Wall.
Mary Wall was 64 years old when she was first diagnosed with Alzheimer's. This book is more than simply the remarkable story of her husband's devotion during seven years of increasing frailty and confusion. Mr. Wall has written, in plain and sometimes graphic terms, what can be expected from the caregiver during the stages of Alzheimer's. This is a short book but a gem of its kind.

Resources on Caregiving and Aging Issues Online

For Virginians

SeniorNavigator
http://seniornavigator.com/
Has a Caregiver Circle to help find local services, recommendations on how to take care of yourself, information about Alzheimer's and dementia, practical resources for home situations, and more.
Virginia Association of Area Agencies on Aging
http://www.vaaaa.org/
"V4A's primary mission is to build the capacity of its members to help older persons to live with dignity and choices in their homes and communities for as long as possible, and to enhance elder rights."
Our local affiliate is the Rappahannock Area Agency on Aging. They provide many useful services to seniors in our community.
Virginia Caregivers Grant
http://www.dss.virginia.gov/text/family/as/caregive rgrant.html
"The Virginia Caregivers Grant Program provides annual grants of up to $500 to caregivers who provide unreimbursed care to a needy relative. Grants are awarded for care provided for at least six months of the previous calendar year."
Applications for grants for the 2005 year are closed; applications for new awards should be accepted between February 1 and May 1 of each year.
The Virginia Department for the Aging
http://www.vda.virginia.gov/
Links to services, prescription assistance programs, and information on topics ranging from adult day care centers to personal safety.

Nationwide

AARP: Caregiving
http://aarp.org/caregiving
A guide for new caregivers, tips for long distance caregiving, recommendations for hiring a home health care worker, choosing an agency for in-home care, balancing work and caregiving, and more.
Alzheimer's Association: Caregivers
http://www.alz.org/
Useful advice for those contemplating caring for an Alzheimer's patient.
Children of Aging Parents
http://www.caps4caregivers.org/
Join their online support group for caregivers of elderly parents. Has a very basic guide to issues of caregiving and helpful links to organizations and firms that address the needs of the elderly.
Eldercare Locator
http://www.eldercare.gov/Eldercare.NET/Public/Home.aspx
"The Eldercare Locator connects older Americans and their caregivers with sources of information on senior services. The service links those who need assistance with state and local area agencies on aging and community-based organizations that serve older adults and their caregivers."
Family Care Research Program
http://www.healthteam.msu.edu/fcrp/default.htm
Has information on symptom management, nutrition, cancer issues, emotional and psychological issues, and family caregiver issues.
Family Caregiver Alliance
http://www.caregiver.org/caregiver/jsp/home.jsp
A national organization that has a lot to offer caregivers: fact sheets, advice, newsletters, online support groups, personal stories, and information on public policies and research.
National Institute on Aging: Caregiving Publications
http://www.niapublications.org/shopdisplayproduc ts.asp?id=29&cat=Caregiving
Order or view online (mostly) free publications of use to caregivers from the U.S. government on exercise, caregiving, home safety for Alzheimer's patients, and long-term care. The Resource Directory for Older People and Talking with Your Doctor are available online only.