For Caregivers: Finding Support and Help

 


For Caregivers: Finding Support and Help
By Arline Kaplan © 2000

Because you are a devoted caregiver, you are at risk of becoming a hidden victim of the disease. For your own well-being and that of the person you are caring for, it is important that you

  • Monitor your stress level and find ways to reduce it.
  • Identify what national and community resources are available.
  • Be willing to ask for help.

Recognizing and Easing Caregiver Stress

Caregiving can be intense, demanding and stressful. It is vital for you to recognize signs of stress in yourself. These can include withdrawing from friends and activities that once brought you pleasure, feeling constantly overwhelmed and exhausted, being unable to concentrate and developing physical ailments (e.g., blurred vision, stomach irritation or high blood pressure). To reduce your stress level, consider arranging regular health checks for yourself, enlisting help from family, friends and others with the task of caregiving, taking rests (breaks, respite) from caregiving, joining a support group and talking with a trusted minister or rabbi or mental health counselor.

Umbrella Resources

Here are some sources of support and information for you:

Alzheimer’s Association

919 N. Michigan Ave., Suite 1100

Chicago, IL 60611-1676

(800) 272-3900; (312) 335-8700

fax: (312) 335-1110

web site: www.alz.org

This national voluntary organization helps your loved one and you obtain information on care options; find help for legal, financial and lifestyle needs; and gain access to clinical drug trials. Books and reading lists are available through the Greenfield Library: (312) 335-9602. The association’s 200+ local chapters also provide educational resources, referral to services and sponsor support groups.

Alzheimer’s Association

Safe Return

P.O. Box 9307

St. Louis, MO 63117-0307

(888) 572-8566

web site: www.alz.org/caregiver/programs/safereturn.htm

This nationwide program has helped locate and return more than 5,000 individuals with dementia to their families. It provides identification products (e.g., jewelry), a national photo/information database, a 24-hour emergency crisis line and wandering behavior education.

Alzheimer’s Disease Education and Referral Center (ADEAR)

P.O. Box 8250

Silver Spring, MD. 20907-8250

(800) 438-4380

fax: (301) 495-3334

web site: www.alzheimers.org.

Established by the National Institute on Aging, ADEAR provides patients and their families with updates on Alzheimer’s disease research; referrals to state, regional and federal resources; the latest publications on topics related to Alzheimer’s disease; and information about clinical trials of medications and other therapies for dementia.

American Health Assistance Foundation (AHAF)

15825 Shady Grove Rd., Suite 140

Rockville, MD 20850

(800) 437-2423; (301) 948-3244

web site: www.ahaf.org

AHAF, a nonprofit organization, has a family relief program that awards emergency grants to help cover the costs related to care and treatment of Alzheimer’s patients. It also funds research and produces a variety of pamphlets on Alzheimer’s disease.

Eldercare Locator

(800) 677-1116

web site: www.aoa.gov.elderpage/

locator.html

Sponsored by the Administration on Aging, the locator is a nationwide toll-free number for finding services for older adults throughout the nation. Even if you live in a different state than your loved one, the locator can help you find home-delivered meals, legal services, respite care or other services.

American Association of Retired Persons

601 E St., N.W.

Washington, DC 20049

(800) 424-3410

web site: www.aarp.org

The national AARP office makes available information on caregiving, living wills, long-term care and healthy living.

Helping Professionals

and Levels of Care Organizations

National Association of Professional Geriatric Care Managers

1604 N. Country Club Rd.

Tucson, AZ 85716-3102

(520) 881-8008

fax: (520) 325-7925

web site: www.caremanager.org

This nonprofit, professional organization can help you locate a geriatric care manager in your area and has a list of questions to ask when looking for a geriatric care manager. Geriatric care managers can help you plan and arrange for the right mix of services that you and your loved one need.

American Medical Association (AMA)

515 N. State St.

Chicago, IL 60610

(312) 464-5000

fax: (312) 464-4184

web site: www.ama-assn.org

The AMA provides an online brochure, Alzheimer Disease, which includes questions you may want to ask your doctor. It also maintains AMA Physician Select, an online directory, to help you locate physicians in your area who specialize in neurology and geriatric psychiatry (e.g., specialties that work with dementia patients).

American Health Care Association

1201 L St., N.W.

Washington, D.C. 20005-4014

(202) 842-4444; (202) 842-3860

fax: (202) 842-3860

web site: www.ahca.org

A federation of more than 12,000 care providers, such as nursing homes and assisted living facilities.

National Association of Social Workers

750 First St., N.E., Suite 700

Washington, D.C. 20002-4241

(800) 638-8799; (202) 408-8600

fax: (202) 336-8310

web site: www.socialworkers.org

NASW strives to enhance the effective functioning and well-being of individuals, families and communities through its work and advocacy. The organization also provides a “Find a Clinical Social Worker” search tool to help you locate a qualified clinical social worker in your area.

National Adult Day Services Association

409 Third St. S.W., Suite 2000

Washington, D.C. 20024

(202) 479-6682

fax: (202) 479-0735

web site: www.ncoa.org/nadsa/

A unit of the National Council on Aging, this association can help you locate licensed or certified adult day care services in your area. It also publishes a online guide Selecting an Adult Day Services Center and a directory of adult day centers throughout the United States with state-by-state listings.

National Association for

Home Care

228 7th St., S.E.

Washington, D.C. 20003-4305

(202) 547-7424

fax: (202) 547-3540

web site: www.nahc.org

NAHC represents home health agencies, hospices and home care aid organizations. It provides online information on how to choose a home care provider.

National Hospice and Palliative Care Organization

1700 Diagonal Rd., Suite 300

Arlington, VA 22314

(703) 837-1500

web site: www.nhpco.org

If a doctor says your loved one is terminally ill, this organization can help you locate either in-hospital or home hospice care. Some hospices have special divisions for Alzheimer’s patients. NHPCO provides a Find a Hospice Care Program search tool to help you locate a hospice program in your area.

Clinical Trials Resources on the Internet

http://clinicaltrials.gov

A searchable database maintained by the U.S. National Institutes of Health that lists open trials on possible treatments for Alzheimer’s disease or other dementias.

www.alzheimers.org/

trials/index.html

Sponsored by the U.S. Food and Drug Administration and the National Institute on Aging, this site provides information about Alzheimer’s disease clinical trials as well as steps involved in gaining FDA approval for treatments.

www.centerwatch.com

This site lists more than 41,000 industry- and government-sponsored clinical trials as well as new drug therapies recently approved by the Food and Drug Administration. You can use the online database to search for clinical trials on Alzheimer’s disease and dementia by geographic region or sign up for the Clinical Trial Notification Service.

Glossary of Common Care Terms

adult day care center

Such centers provide structured, comprehensive programs (e.g., health, social and related support services) in a protected setting during part of a day.

assisted living

Such services provide private apartments, but also meals, personal care, help with medication, limited supervision, organized activities and nursing services.

home care

Home care provides your loved with supportive services, including nursing care, monitoring of medications, assistance with meals, housekeeping and companionship and supervision.

hospice care

Normally given in the last six months of your loved one’s life. Hospice care provides services and care either at home or in a health care facility by a team of professionals (e.g., nurses, social workers), clergy, home care aids and volunteers.

nursing homes

Nursing homes provide 24-hour supervised nursing care, personal care, therapy, nutrition management, organized activities, social services, room, board and laundry.

respite care

Respite care means giving you the caregiver a break for caregiving. Respite services are usually short-term, temporary or intermittent ongoing services to help you take time off but know your loved one is cared for.

Caregiving Books

Between Two Words: Special Moments of Alzheimer & Dementia

By Ellen Young and Peter Rabins, Prometheus Books, 1999

In a Tangled Wood: an Alzheimer’s Journey

By Joyce Dyer and Ian Frazier, Southern Methodist University Press, 1996

The Thirty-Six Hour Day: A Family Guide to Caring for Persons with Alzheimer’s Disease, Related Dementing Illness and Memory Loss in Later Life

By Nancy Mace, Peter Rabins and Paul McHugh, Warner Books, 1992

Therapeutic Caregiving: A Practical Guide for Caregivers of Persons with Alzheimer’s and Other Dementia-Causing Diseases

By Barbara Bridges and Jaime Temairik, BJb Publications, 1996

What You Need To Know About Alzheimer’s—A Guide for Caregivers and Patients

By John Medina, Ph.D., CME Inc. and New Harbinger Publications, Inc., 1999

Your Name is Hughes Hannibal Shanks: a Caregiver’s Guide on Alzheimer’s Disease

By Lela Knox Shanks, Penguin Books, 1999

Dear Friends,

Hi. I am a freelance medical journalist. Most of the articles posted on this website were originally written for healthcare professionals, but I believe patients/consumers may find value in the articles as well. Many of us who have long-lasting or life-threatening health problems become experts on them. For that reason I have kept the rights to electronically post these articles. I hope to continue to post even more articles and develop new ones specifically for this site. It is my intention to keep this site free from the influence of advertisers and just offer you high quality, well-researched information. Your financial support is needed to continue this user-sponsored service.

I welcome your comments, suggestions and financial support. You can send voluntary contributions to, or contact me at:

HealthRising

Arline Kaplan

 

 

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