“Sometimes life even gets better at a care facility, thanks to activities not available at home, like pool therapy, classes or people to talk to. It’s never easy, but there’s relief in knowing competent care is available when needed.”
“Planning ahead is the best way to land in the best spot. When you know you have ALS, get on waiting lists at many assisted living and nursing homes.”
One recent study noted that “individuals who reported providing instrumental support to friends, relatives and neighbors, and individuals who reported providing emotional support to their spouse, had a 30 to 60 percent decreased chance of dying over the course of the study,” compared to their nonhelping counterparts.
It’s believed that the positive emotions generated by helping behavior may bolster caregivers’ overall sense of well-being, affecting life satisfaction and the ability to cope with stress. Positive emotions also have been shown to lead to increased longevity and faster recovery from cardiovascular stress.
These effects are available not only to the primary caregivers of people with ALS or those who spend many hours a day caregiving — they also benefit volunteers and others who are asked to help. This “helper’s high” can be found in the little moments such as a smile shared between caregiver and loved one. Some may find pride in overcoming difficulties or in knowing a loved one is receiving the best care possible.
Of course, these benefits arise for the caregiver only when he or she is given adequate support. So inviting others to share the care not only helps the primary caregiver; it gives others a strong emotional boost — it’s a win-win-win situation!
One way to experience the rewards of caregiving is to get support through respite care. Call on your network of paid or volunteer helpers to stay with your loved one so you can get a hair cut, go to a ball game, shop, enjoy a hobby, or just sit in the park and watch birds. Ask for babysitting or for someone to take the kids overnight occasionally.
Every community has respite facilities such as adult day care centers that will take the loved one for a few hours or days to give the caregiver a break. In addition, a loved one who qualifies for hospice can spend a night or two at a hospice facility.
Schedule respite regularly — you’ve earned it, and it will help everyone in the family, including the person with ALS. At first it may feel uncomfortable or “selfish” to take time for yourself, but remember this is necessary for you to do the best job possible over the long haul.
Respite Care Benefits Both Patient and Caregiver, MDA/ALS Newsmagazine, November-December 2006
Caregiver Respite: The Time it Takes to Make Time Is Worth the While, MDA/ALS Newsmagazine, December 2005
National Respite Locator, a service of the ARCH National Respite Network and Resource Center, (919) 490-5577, ext. 223
Easter Seals, (800) 221-6827. Easter Seals provides services such as adult day care.
National Adult Day Services Association, (877) 745-1440
Shepherd’s Centers of America, (800) 547-7073. A network of interfaith community-based organizations
National Family Caregiver Support Program, U.S. Administration on Aging
U.S. Department of Veterans Affairs - Office of Geriatrics and Extended Care, (877) 222-8387. Veterans eligible for outpatient medical services can receive in-home respite care.
MDA support groups are among the most important services the Association provides. Caregivers credit support groups with new friendships, important advice on equipment and more. Couples and individuals who are farther along on the ALS journey give new members a realization that they can get through this; no professional counseling or family support is quite as meaningful as peer support. People don’t have to explain ALS or any of the needed care or devices. They don’t have to explain the exhaustion of caregiving or the other emotions and stresses they experience. Everyone who’s there already knows.
Support groups aren’t just places to share emotions and pick each other’s brains. Groups often invite knowledgeable speakers or have casual social time. There often are no boundaries on what things can be discussed. Toileting, child-rearing problems, sex, family conflicts, breakdowns, death — all are parts of the ALS experience that can be brought to a support group.
Attending support group meetings can be difficult because of distance or other issues. There are many online listservs where people with ALS and caregivers share viewpoints and questions. Contact your local MDA office (800-572-1717) to see if they can put you in touch with others in your area who are living with ALS.
Private or family psychological counseling may be helpful for a time and often is covered by insurance. Check under psychologists or social workers in the Yellow Pages, or ask for a referral at the MDA clinic.