“As each day goes by dealing with the disease, I reach down into my bag of tricks and find the magic to get him through another day. However, when it comes to dealing with me, my emotions, my time off, there are no magic tricks, just fortitude to get another day over with.”

A Family Caregiver

It was 1974 when doctors diagnosed Suzanne Mintz’s husband, Steven, with multiple sclerosis, a chronic, often disabling disease of the central nervous system. “We were devastated,” Suzanne recalls. “Steven was only 31. We had been married seven years and had a 5-year-old daughter.” Today, he is 57, in a wheelchair, and needs help in virtually every activity of daily living.

Though years later in 1993 Suzanne would found the National Family Caregivers Association (NFCA)- a nonprofit membership organization dedicated to improving the quality of life of America’s family caregivers - in 1974 Suzanne admits that neither she nor Steven knew how to cope with the physical or emotional impact of his illness.

“Back then we didn’t know where to turn. Steve may have had the clinical diagnosis, but I was just as impacted by the disease. I know now that illness and disability is a family affair. Today, we don’t say Steven has MS. We say ‘we’ have MS.”

Steven and Suzanne reacted to their private pain and grief in very different ways, which created a barrier between them. Frequent bouts with depression, frustration, anger, and poor communications took its toll on the marriage. They separated twice, reconciling both times, all the while trying to figure out how to deal with the debilitating disease that had changed the course of their lives.

Coping with anger

Expressing your feelings is critical to maintain mental and physical well-being, Suzanne admits; however, it’s important to translate your anger into positive action. “I kept my anger bottled up and eventually it spilled over into major depression. I wasn’t angry at my husband; I was angry at his illness, at our circumstances.”

Through regular exercise and writing about her feelings in a journal, Suzanne learned to channel her anger constructively. “Ranting and raving will get your feelings out but the idea is vent all that energy into something positive,” she stresses.

Citing an example, Suzanne referred to a friend in Washington State whose wife has Pick’s disease, a rare form of presenile dementia that occurs mostly in women ages 40-60 and involves progressive, irreversible loss of memory. “He was so frustrated because there is no known cure, and because it’s such a rare disease, there’s not much research going on,” Suzanne explains. “So to vent his anger and frustration, he’s become an activist for NFCA and is channeling his energy to do something positive for caregivers.”

Positive expression

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.

Example: “I’m not angry at you, I’m angry at your illness. I am so frustrated and tired and angry that don’t have enough time for myself and I am so angry at your disease. I want it to go away and I know it won’t and 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, i.e., “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, and I’m frustrated because this illness has caused it to take an hour to get you dressed in the morning. I know it’s not your fault and I know it’s caused by the disease, so I’m angry at the disease.”

Getting help

How do you get a break? Perhaps you have siblings or other family members who live nearby and still most of the burden falls on you. How do you get your family to share in the responsibilities of caregiving?

Suzanne recommends calling a family meeting with a third party present, perhaps a therapist, a social worker or a minister – to serve as an arbitrator. The caregiver should then bring family members up to date on the loved one’s condition and share his or her concerns and frustrations. Everyone present should have an equal opportunity to express thoughts and feelings about the situation.

Optimally, the meeting will yield a better understanding among family members of what the primary caregiver is going through and the importance of lending their support in the caregiving process. Whether family members offer to contribute financially, to conduct research for adaptive products and services, or to be physically present to give the primary caregiver a respite break, all contributions and offers should be explored.

“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 need help from the rest of the family,” Suzanne says.

Of course, if family members still don’t respond, you can’t force them, Suzanne adds. “Our daughter recently moved near us so she helps out. Sometimes I call on my friends and neighbors for help,” she says. “I don’t need continuous help but I know that if Steven falls out of his wheelchair, they would come over in a minute. It’s important to have that kind of support system and assistance.”

Combating isolation

“Isolation creeps up on you,” Suzanne says. “Sometimes you’re not even conscious of it happening. Other times it’s a rude awakening when people just stop being your friend.”

But reaching out to others can be difficult, especially when you’ve been isolated for a while and are out of sync with the outside world. It requires an active push – a firm resolve that you’re going to find friends that you can rely on, whether they are phone pals, female 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.

Self-advocacy for caregivers

Suzanne confesses that she “talks the talk” very well - but doesn’t always follow her own advice. “When I’m starting to feel overwhelmed, and life is topsy-turvy, I remember the four rules of self-advocacy and try to slow down and prioritize my own health. People need to realize that self-preservation is not selfish.”

Looking to the future, Suzanne says, “We’re all going to be in this boat eventually so we need to help each other. I think caregivers should be seen as part of the healthcare team. We need training and support, healthcare benefits, changes in Medicare, more community-based support, volunteer groups and help networks.

“I think Care Advisors should be available to help people figure out the options and resources they need during difficult times,” she continues. “When you’re going through crisis and transition it’s so hard to go it on your own. Having a Care Advisor to consult with caregiving families would be an enormous benefit.”

When it’s time for a nursing home

“This is definitely one of the toughest decisions you’ll ever have to make,” Suzanne says, adding that she recently faced this with her 86-year-old father. “My mom, 82, couldn’t take care of him any longer, and there’s no point in having two very ill people. The caregiver is the steward of this person and we have a moral responsibility to monitor their health as well. And, it’s important to remember that just because a person is in a nursing home doesn’t mean that you’re not taking care of them.”

Support for caregivers

People may say they are interested in caregiver support groups, but statistics show that not many people utilize them, Suzanne notes. Some people are reluctant to share their feelings, some consider attending support group meetings inconvenient, others enjoy “chat rooms” on the Internet; everyone has to find his or her own medium.

Membership in the NFCA is one solution. Founded in 1993, the organization has over 7,000 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.

“There’s no doubt that Steven inspired me to form the NFCA,” Suzanne says. “He has the slow, progressive type of MS; in 25 years he has had no remissions. Still, he works as an economist for the U.S. Department of Energy. He drives to the office three days a week in a special van that he can drive in his wheelchair. Two days a week he works at home, so he puts in a full week. He’s a strong person.”

For more information on NFCA membership, call 1-800/896-3650; write NFCA, 10400 Connecticut Avenue, Kensington, MD 20895, or visit the NFCA Web site: www.nfcacares.org

Other resources:

Interfaith Caregivers Alliance 1-816/931-5442
They provide respite support through local congregations and supply information about volunteer services.

Easter Seal Society 1-800/221-6827
They offer respite services (varies from location to location), give referrals to over 400 locations nationwide, support direct rehabilitation services to disabled people, and provide family support groups.

Friends Health Connection 1-800/483-7436
They match people with health problems with others in similar situations, bring together family/friends/caregivers of people with health problems with others in similar situations via the Family Network, and publish a newsletter.

FamilyCareAmerica
1004 North Thompson St., Suite 205
Richmond, VA 23230
Web site: www.familycareamerica.com
Phone: 804/342-2200 • Fax: 804/342-2338
E-mail: info@familycareamerica.com

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