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Services and support for caregivers range from home visits to assess whether a loved one is beginning to have signs of an age-related illness, to practical and financial support for the full-time, multiyear caregiver. Muir wishes more people knew what the Alzheimer’s Association has to offer through its many regional offices nationwide. “The Alzheimer’s Association specializes in being able to link people with the appropriate community resources in the region,” says Muir. “We have listings of private home care, adult day care, and companionship agencies. We can help determine eligibility for assistance to help pay for programs, and we offer emergency respite care grants.” That last option, called the Time Away Program, helps caregivers in urgent personal and financial need to take a break, through monetary grants and referrals for daytime or overnight care for their loved one.
Other services of the Alzheimer’s Association include:
• A 24-hour telephone helpline for information, referrals, and a caring ear;
• Ongoing support groups for caregivers, family, friends, and early-stage patients;
• Free home-visit or phone consultations with trained experts, to guide the family through health, legal, and financial mazes;
• A lending library of educational materials in diverse media, and of recreational equipment;
• Social gatherings as a way to get out of the house and keep in touch with others;
• The Safe Return Program, providing identification products and optional registry with a national database that helps memory-impaired people get safely home if they wander or get lost.
A great assist for new caregivers is the Savvy Caregiver Program, run by Northeast Health in the Capital Region. These frequent, short-term classes teach caregivers key skills and knowledge in four main areas: managing daily life by keeping the person enjoyably involved; managing behavior to help the person remain calm and in control; caregiver self-care; and managing resources. The classes are free for families living in Albany County, thanks to a grant from the New York State Office for Aging and the Albany County Department of Aging. The Office for Aging also lists a number of other statewide services and resources on its website.
Helpful books are plentiful too. For instance, author Denise Brown crafted a handbook that offers a roadmap to the caregiving journey. In The Caregiving Years: Six Stages to a Meaningful Journey, Brown outlines in an organized, supportive, refreshing manner, the progression of involvement one can expect. The first stage is that of the “Expectant Caregiver,” who prepares for the possibility that a loved one will need care by helping to put end-of-life affairs in order, such as by completing advance directive and financial documents. The middle stages reflect the progression, from early months of care to several years, during which the caregiver learns more about the illness, gets used to caretaking tasks, finds and uses support services, and adjusts to balancing caregiving with one’s life—including the emotional dimension. The last two stages are the “Transitioning Caregiver,” which addresses the needs of both the caregiver and loved one at the end of life, and “Godspeed Caregiver,” covering a period for two years after death, because the caretaker’s personal journey doesn’t suddenly stop when caretaking needs come to a halt.
A support group, though it may sound unappealing to some, can be a lifesaver. Diane Van Dusen, LMSW, runs a number of support groups for caregivers through her work as clinical manager of the Alzheimer’s Disease Assistance Center, which covers 11 counties in the Capital Region. “The biggest thing people take away from a support group,” she says, “is the sense of not being alone. Caretaking can be a very lonely job. The exchange within the group gives people the feeling that someone else understands what they are going through. It reduces their sense of isolation. They can even laugh together, they can cry—no one’s judging. There is a power in the group that goes beyond what someone can get from individual counseling.” It’s also a great way to share information. “What works for one person might work for someone else.”
In reality, not everybody thinks they can make time for a once-weekly, or even a once-monthly, group meeting. But there are ways to make it happen, Van Dusen explains. “At some support group sites, such as here at the Marjorie Doyle Rockwell Center in Cohoes, the loved one can spend the hour in the adult day-care program. Or, we suggest the caregiver look for a friend or companion aide, just for that time, because getting support is an essential piece to their ability to provide care.”