No one underestimates the physical, emotional, financial and social strain that caregivers experience and no one recommends going it alone if you don’t have to. Support comes in many formal and informal modes, through individuals, groups, seminars, social events, publications, web sites, books, sermons. Let’s look at a few.
Two formal “support systems” from AARP and a non-profit called ShareTheCaregiving, Inc. offer inspiring and extremely practical support plans. AARP’s Prepare to Care planning guide is essentially a 30 page “business plan” to set up your new or expected “caregiving service,” with HELP. It covers discussion of need for a plan among family members, with the potential care recipient having an active role in that conversation if possible; then setting up the family team. The detailed charts help you define the needs and develop an action plan, with a team leader and “point person” for each task identified. “The care recipient’s wishes and priorities are the cornerstone of every family caregiving plan,” the AARP Guide emphasizes. Having such a plan, with commitments from family members and friends to take specific responsibilities spreads the work and reduces the stress.
Unfortunately, many caregivers find themselves immersed in the role without having time for this kind of formal family planning—following a stroke, heart attack, accidental brain injury—but they can use this Guide to build a support team and plan at any stage.
A similar structured model arose from actual caregiving experience– 10 women caring for a friend with cancer for three years–and led to the book Share the Care, and the nonprofit, ShareTheCaregiving, Inc. (www.sharethecare.org). This model involves 10-20-30 individuals who might not even know each other linked together by two lead organizers to form a team, helping one person they have in common. Some key elements:
- Creates a unique caregiver “family” from friends, relatives, neighbors, co-workers and acquaintances—answers their question–“How can I help?”
- Ensures that the team will get every job done and no person will have too much to do!
- Discovers the hidden talents within the group, making the most of their resources; copes with group issues, and stays together in the face of adversity
- Navigates through the medical maze…
- Makes caregiving a meaningful, loving experience and replaces stress, fear and loneliness with teamwork, courage and friendship
Every isolated, exhausted, depressed, stressed caregiver must dream of such a support system!
Reached in New York, ShareTheCaregiving, Inc. founder Shelia Warnock agreed it might not work as well for a 92 year old Alzheimer’s patient who lacks a lot of friends, business colleagues or other acquaintances . “Yes, and that person might not adjust well to 20 or 30 different people entering his home anyway, but when it fits, it is a life changing experience for the caregivers, and great comfort to the care recipient,” Ms. Warnock said.
Using the AARP and Share the Care models, you might be able to develop a small team of caregivers, regardless of the care recipient’s age or condition.
These two models do not involve a geriatric care manager or other professional who might help you assess the needs, the resources, establish a care plan and guide and monitor the evolving situation. Care managers also provide support and counseling to both the caregivers and the care recipient.
Traditional support groups affiliated with the Alzheimer’s Association operate in many communities, usually drawing 5-12 participants. A trained facilitator takes a non-directive role, letting the participants share experiences, concerns and suggestions for one another usually without an agenda or outside speaker. Hearing how others handle communication, eating, bathing, dressing, wandering, lethargy, aggressiveness or other issues can give you specific ideas. “If they survived that stage, so can I,” one often hears. The web site www.alz.org, their hotline 1-800-272-3900, or Central Jersey Chapter at 800-883-1180, will lead you to groups that meet at convenient times and places.
Without sufficient support and time off to rest and pursue some personal needs, female caregivers, even more than males, suffer from anxiety and depression, studies show. Seeking personal mental health services could prove valuable for the overwhelmed “woman in the middle.” You might find more time for critical “self-care–” or less need for it–if you use adult day medical services or in-home companions/aides as well as other family caregivers, of course.
By Tom Martin