 Who Cares for Caregivers?
by Nancy Carroll
In 1993, Suzanne Mintz founded the National Family Caregivers Association (NFCA). NFCA is a nonprofit membership organization dedicated to improving the quality of life for family caregivers.
Positive Communication
How do you tell your loved one how you feel without being hurtful? Suzanne suggests choosing your words carefully so you can get the anger out without verbally attacking the person. Here are some examples of things you might say if you are angry:
- I’m not angry at you, I’m angry at the disease (or accident)
that took your leg.
- I am so frustrated and tired and angry that I don’t have
enough time for myself.
- I want the amputation to go away and I know it won’t.
- I know it’s affecting you and it’s affecting me, too. • I feel so upset and lonely.
Identify sources of your frustration other than the person by saying such things as:
- I’m frustrated because the home care person didn’t show up.
- I’m frustrated because someone parked in the handicapped
parking spot at the grocery store.
- I’m frustrated because it takes an hour to help you get
dressed in the morning. It’s not your fault.
 Getting Help
How do you make time for a break? Perhaps you have family members nearby, yet most of the burden falls on you. How do you get your family to share in the responsibilities of caregiving?
Suzanne suggests holding a family meeting. “The idea of the family meeting is to get everything out on the table, to understand where each person is coming from, and to underscore the fact that the primary caregiver cannot continue to do everything alone, that they sometimes need help from the rest of the family,” Suzanne says.
It is important to have someone outside the family, such as a therapist, a social worker or a minister, attend the meeting. The outside person’s role is to help the family find ways to meet the needs of the caregiver. Everyone should have an opportunity to talk about what is going on and express their thoughts and feelings. Hopefully, a family meeting will lead to:
- A better understanding of what the caregiver is going
through
- An understanding of the importance of helping
the caregiver
- Offers of financial assistance
- Help in finding assistive products and services
- Offers to provide a break for the caregiver.
Combating
Isolation
Reaching out to others can be difficult, especially when you’ve been isolated for a while. It requires a firm resolve that you’re going to find people you can rely on, whether they are phone pals, friends, neighbors, or people at church. “It’s really important to maintain some kind of network
because not only can friends keep you from being isolated, they can also be there for you when you need support and help,” Suzanne says.
The Four Rules of Self-Advocacy for Caregivers
- Take charge of your life.
- Love, honor and value yourself.
- Seek and, at times, demand help.
- Stand up and be counted.
Support for Caregivers
Caregiver support groups offer important benefits.
- Caregivers make friends with people who are in
similar situations.
- Caregivers can learn how others cope.
- Caregivers have an opportunity to vent their feelings with
others who understand what they are going through.
- Caregivers have time away from caregiving.
People may say they are interested in caregiver support groups, but statistics show that not many people use them, Suzanne notes. If support groups are so helpful, why don’t more people attend?
- Some people are reluctant to share their feelings.
- Some people can’t find a convenient time or place
for support group meetings.
- Some people have problems with transportation.
- Others prefer different types of interaction such as e-mail
or “chat rooms” on the Internet.
Membership in the NFCA is another solution. The organization has over 20,000 members. Membership for family caregivers is free. You will receive information about practical aspects of caregiving as well as emotional ones, all written from a caregiver’s perspective.
For more information on NFCA membership, call 800/896-3650, write NFCA, 10400 Connecticut Avenue, Kensington, MD 20895, send e-mail to info@nfcacares.org or visit the NFCA Web site at www.nfcacares.org
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