Been There, Done That

Excerpted from “Tips from Caregivers Who’ve Been There”, Stroke Connection Magazine November/December 2003

In a 2002 report in the Journal of Neuroscience Nursing, researchers interviewed family caregivers to identify their needs and concerns, strategies they used to deal with stroke, and advice they would offer other stroke caregivers. Here are their suggestions.

Organize Healthcare Needs

  • Keep a running list of questions to take with you to doctor’s appointments.

Provide Emotional Support

  • Encourage the stroke survivor to talk about his or her feelings. Listen, show love and patience.
  • Read an article or book together about another stroke survivor. This helps stroke survivors know they are not alone.
  • Join a support group for encouragement and ideas from people who’ve been there. Locate a support group in your area.

Promote Independence

  • Allow the survivor to take care of him or herself as much as possible. Although it may be difficult to watch your survivor struggle to do things alone, this promotes greater independence in the long run.
  • Provide socialization opportunities for yourself and your survivor
  • Go to the mall or grocery store with your survivor so you both can enjoy some physical activity.
  • Consider adult day care for the survivor during the week to give yourself a break and a social opportunity for your survivor.
  • Continue pre-stroke hobbies and activities as much as possible. Call friends regularly to play tennis or golf or to go walking, and schedule friends, family or professional caregivers to take care of your survivor during that time.

Source: “Needs, Concerns, Strategies and Advice of Caregivers the First 6 Months After Discharge,” Journal of Neuroscience Nursing, October 2002.

Organizations You Should Know

AARP
Non-profit organization addressing the needs of people 50 and older.
888-OUR-AARP
www.aarp.org

Administration on Aging
National and regional resources including the Eldercare Locator, a database of local agencies.
202-401-4634
www.aoa.gov

Alzheimer’s Association
End-to-end support for caregivers to Alzheimer’s patients.
800-272-3900
www.alz.org

American Association of Homes and Services for the Aging
Offers a continuum of eldercare services through a membership of 5700 organizations.
202-783-2242
www.aahsa.org

ARCH National Respite Network
Provides information and a national respite locater for caregivers.
919-490-5577
www.archrespite.org

Children of Aging Parents

A non-profit organization dedicated to assisting the 34 million people who are caring for an elderly person. The website provides links to support groups, a newsletter and more.
www.caps4caregivers.org

Faith In Action
Interfaith caregiving program of the Robert Wood Johnson Foundation.
877-324-8411
www.fiavolunteers.org

Family Caregiver Alliance

Information, education, research and advocacy for caregivers.
800-445-8106
www.caregiver.org

Hospice Foundation of America
Assistance with coping with terminal care and grief.
800-854-8402
www.hospicefoundation.org

Lotsa Helping Hands
Create a network of volunteers and organize help for caregivers in a community.
508-337-6338
www.lotsahelpinghands.com

Medicarerights.org
Non-profit organization for assistance with Medicare issues.
212-869-3850
www.medicarerights.org

National Adult Day Services Association
Focuses on health, therapeutic and social services for the elderly.
800-558-5301
www.nadsa.org

National Alliance for Caregiving
Nation support for caregivers with emphasis on political action.
301-718-8444
www.caregiving.org

National Association for Senior Move Managers
Dedicated to helping caregivers deal with the emotional and physical issues of moves for the elderly.
877-606-2766
www.nasmm.com

National Council on Aging
Network of 14,000 organizations including senior centers, adult day care, senior housing, employment consumer groups and faith based services. Site includes benefitscheckup.org, a site that guides seniors on eligibility for state and federal programs.
202-479-1200
www.ncoa.org

National Family Caregiver’s Association (NFCA)
Providing education, resources, support and community to family caregivers across the life span.
800-896-3650
www.thefamilycaregiver.org

National Hospice and Palliative Care Organization
National consumer initiative to improve the end of life, supported by Robert Wood Johnson Foundation.
800-658-8898
www.caringinfo.org

Rosalynn Carter Institute for Caregiving
Works to provide quality long term care and recognition of the issues in caregiving.
229-928-1234
www.rosalynncarter.org

Social Security Online
Official site of U.S. Social Security Administration. Forms, tools and helpline information.
800-772-1213
www.ssa.gov

Well Spouse Association
Provides support for wives, husbands and partners of the chronically ill or disabled.
800-838-0879
www.wellspouse.org