November is the month officially set aside to honor the nation’s family caregivers, and to advocate changes that support and empower their caregiving.
Organized by the National Family Caregivers Association, National Family Caregivers Month 2004 — with the theme “Share the Caring!” — focuses on public policy, and patient and caregiver health and safety. Activities and presentations on these topics are being held across the country.
“One of the goals of NFC Month is to get family caregivers to realize that their own good health is the best present they can give their loved one,” says Suzanne Mintz, NFCA president and co-founder.
“This year we’re encouraging people to help family caregivers stay healthy by lending a helping hand. There are so many ways to help. Caregiving is more than a one-person job.”
One limited source of help is the federal National Family Caregiver Support Program, an Administration on Aging program available in all states through local community service agencies and area councils on aging. It’s geared toward family members who are caring for someone older than 60, and to caregivers over 60 who are caring for a minor child.
The program provides five basic services: information about available services to help caregivers; assistance in gaining access to services; individual counseling, support groups and caregiver training; respite care; and a limited number of supplemental caregiver services.
Several bills making their way through Congress also offer caregiver support. The Lifespan Respite Care Act (S. 538, H.R. 1083) authorizes $90 million in competitive grants to make respite more readily available to family caregivers, regardless of age or disability. The Ronald Reagan Alzheimer’s Breakthrough Act (S. 2533, H.R. 4595) also contains the full text of the Lifespan Respite Care Act.
Every caregiver knows it’s hard to get help. Asking can feel awkward and embarrassing, and there’s a chance you won’t get help even if you ask. But usually requests for help — directed to the right person or organization — have a positive result.
“A little bit of help can go a long way,” Mintz says. “A little bit of shared care can make a big difference.”
Here are 10 ways to get more help with the caregiving workload:
- Convince yourself you need it.
List everything you do in a day to remind yourself it’s a big job. Overworked, exhausted caregivers are more prone to accidents and mistakes, as well as their own health challenges. The smart solution is to delegate. Asking for help is a sign of strength and coping.
- Be clear about what you want.
Is it two hours of respite on Tuesdays? Round-trip rides to soccer practice for your youngest child? Know what you want and ask for it.
Avoid vague requests: “Maybe sometime you could stop by to visit with Al for a few minutes?” Make requests direct and specific.
- Brainstorm sources of help.
Sometimes the same people get asked a lot, while others never are asked, even though they’ve offered help.
Consider neighbors and acquaintances who might be glad to do simple repairs or bring over a movie to watch with your loved one. Ask a knowledgeable relative to help sort out finances or insurance papers. Check out the phone book to locate church and youth groups, service clubs, scouting organizations, etc.
- Get help getting help.
Ask a close friend or relative to ask people for help on your behalf. Using an intermediary often makes the process more comfortable for everyone.
Another resource is a personalized Web site, such as one offered by the for-profit site CareCircle. These use the Internet to allow people to volunteer for times and tasks you post on the site.
- Be simple.
People feel good about doing mundane chores like laundry, mowing, picking up milk or returning videos. Break larger tasks down into smaller jobs. These simple bits of help add up.
- Seize the moment.
Keep lists of chores by the phone or in a purse, so when well-wishers ask, “Is there anything I can do to help?” you can tell them.
Or, ask if you can call them when you need something from the store or a short respite. If they say yes, call them.
- Expect some hesitation or refusal.
People lead complicated lives. If they turn you down, remember they’re refusing the task, not you. Consider giving them a second chance another time, urges the Family Caregiver Alliance.
- Pay for some services.
Treat yourself to services you used to do yourself, like cleaning. A clean house lifts the workload and the spirits.
- Get more information.
Learn from others’ experiences by attending local caregiver support groups or finding groups online.
Call your area Council on Aging for lists of in-home services that are available in your area. Learn more about area hospice providers.
- Advocate more help.
There’s an old saying, “Ask boldly and ye shall receive.” Good-hearted people often don’t know how to help until you tell them what you need.
Take the message to a wider audience by writing letters to the editor and elected officials about needed changes in public policy, so someday all family caregivers can get the help they need.