Does this imaginary conversation sound familiar?
Expert Advice Giver (EAG): (pompously) Caregivers must take time for themselves on a regular basis to maintain the physical and mental health necessary to do their demanding jobs.
Caregiver: (snorts) Yeah, right. Time off doesn’t just happen — it takes planning, scheduling, and training somebody new. Who has time for that?
EAG: (earnestly) But not taking time off may end up costing you more time and difficulty in the long run. Unrelieved caregiver stress has been implicated in weakened immune function, back pain, anxiety, depression, heart strain, memory loss, overeating, sleeplessness, exacerbation of existing medical conditions, impaired healing …
Caregiver: (brusquely) Yes, yes — but I’m fine. Really. I can handle it all: the caregiving, a job, the family, the housework, reshingling the roof. I’m tougher than I look.
EAG: Well, if you won’t do it for yourself, do it for your loved one. According to the National Family Caregivers Association (NFCA), more people enter nursing homes because their caregivers suffered from burnout than because their own condition worsened. And a 1999 study published in the Journal of the American Medical Association found that stressed-out elderly spousal caregivers with their own history of chronic illness had a 63 percent higher mortality rate than similar noncaregiving peers. Ask yourself: Who will provide my loved one with care if I’m no longer around?
Caregiver: But...but…it will cause me even more stress finding somebody I trust to stay with my loved one while I get away. And then I have to train that person in all the special routines and procedures. And then my loved one probably would hate having a stranger around anyway — so no, it’s just easier to do it all myself.
EAG: What about asking family for help?
Caregiver: (bitterly) Ha! Don’t you know that 76 percent of family caregivers say they don’t get regular help from other family members? I thought you were the expert!
EAG: (sighs) OK, I guess you “win.” Continue to do it all yourself without a break.
Take time to make time
If you’ve decided you’re tired of “winning,” and are ready to do what it takes to find other sources of help and support, congratulations! You’re upholding the first principle of caregiving, according to the NFCA: “Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.”
Respite is the term used to describe temporary care provided to a person with disability or serious illness so the caregiver can get a break. Respite can take place in or out of the home, for any length of time, depending on available resources.
“We tend to find excuses as to why we neglect our social life and stay home,” says Shirley Loflin, a caregiver to her physically incapacitated husband and an advocate who works with the Rosalynn Carter Institute of Caregiving in Americus, Ga. “As much of a hassle as it is to get things lined up to leave, it can be done; just begin early and make several lists.”
Loflin recommends letting your loved one participate in respite preparation — the planning, lists, gathering of supplies — “and they will feel a part of something fun instead of feeling abandoned. I think my husband actually looks forward to my leaving because it brings something different to his life, and that’s always good.”
Some places to find respite help include:
- Faith in Action: Wake Forest University School of Medicine, Winston-Salem, NC; (877) 575-4932. This interfaith volunteer caregiving program has some 840 programs and is available in every state. Though they don’t provide overnight or medical care, volunteers can set up regular visits to give caregivers a break.
- National Respite Locator Service: Chapel Hill, N.C., (919) 490-5577. This organization helps identify respite providers in your area.
- Shepherd's Centers of America: Kansas City, Mo., (800) 547-7073. Some 70 independent centers in 21 states provide respite care, telephone visitors, in-home visitors, nursing home visitors, home health aides, support groups, adult day care, and information and referrals for accessing other services available in the community. Services and eligibility vary by center.
- Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill, by Cappy Capossela, Sheila Warnock, (Simon and Schuster, 2004). This book provides step-by-step instructions for creating a unique caregiver “family” from friends, relatives, neighbors, co-workers and acquaintances. The Web site, www.sharethecare.org, provides additional information and resources.
Help also might be available through service organizations (like the Rotary), youth groups like the Scouts, and church groups. Or you may want to hire help independently. For tips on finding and keeping personal care assistants, see the Quest magazine article, “Despite the Challenge People Love Their Live-Ins” (November-December 2005).
Local Independent Living Councils, area agencies on aging or your local MDA office also may be able to help locate the help you need to keep doing the best caregiving job possible — for yourself and your loved one.