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Although the great majority of caregivers have expressed their need for good information, in a 2001 study only 28% of caregivers believe they have received thorough and helpful information from their doctors. It is important for caregivers to receive counseling and support for themselves. Studies suggest that caregivers who are offered counseling on coping and handling stress experience fewer reactions to their patient's behavioral problems than those without such help. In one study in which caregivers took part in support programs, institutionalization of the patient was delayed by a year. National and local Alzheimer's associations are available and can provide important support and other services.
Nursing Homes and Other Outside Services
A point comes when the most devoted caregiver will probably need to institutionalize the patient. That point is determined not only by the caregiver's emotional endurance, but also by his or her physical strength and stamina, as a patient typically takes on the random, undisciplined behavior of a very young child. Financial considerations in finding a nursing home are often paramount, but the kind of care is equally important. Although fully half of all nursing home patients suffer from Alzheimer's, not all nursing homes have programs specifically designed for them. Some institutions may claim that they do, but often they simply group patients together without offering any special programs. If a caregiver manages to find a facility that offers good services, it may be located far from home, making visits difficult. The caregiver must then decide whether superior care at a distant institution is worth seeing the patient less frequently. When the patient's illness becomes terminal, a hospice program may be another option.
Twelve Steps for Caregivers
1. Although I cannot control the disease process, I need to remember I can control many aspects of how it affects my relative.
2. I need to take care of myself so that I can continue doing the things that are most important.
3. I need to simplify my lifestyle so that my time and energy are available for things that are really important at this time.
4. I need to cultivate the gift of allowing others to help me, because caring for my relative is too big a job to be done by one person.
5. I need to take one day at a time rather than worry about what may or may not happen in the future.
6. I need to structure my day because a consistent schedule makes life easier for me and my relative.
7. I need to have a sense of humor because laughter helps to put things in a more positive perspective.
8. I need to remember that my relative is not being difficult on purpose; rather that his/her behavior and emotions are distorted by the illness.
9. I need to focus on and enjoy what my relative can still do rather than constantly lament over what is gone.
10. I need to increasingly depend upon other relationships for love and support.
11. I need to frequently remind myself that I am doing the best that I can at this very moment.
12. I need to draw upon the Higher Power, which I believe is available to me.
Source: The American Journal of Alzheimer's Care and Related Disorders & Research, Nov/Dec 1989
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