Question (by e-mail): Since my wife was diagnosed with Alzheimer's disease a little over three years ago, I learned very quickly that, although friends and family mean well when they say "We'll be glad to help you," as a caregiver, I have been pretty much alone. However, with the assistance of a small, private adult day care near our home, I have been able to keep my wife out of a nursing home and keep my sanity. But as time goes by and her condition continues to deteriorate, I find myself taking her to adult day care more and more.
While I sometimes feel that it would be easier on me to place her in a nursing home, I can't seem to do it - at least not now. I am concerned that friends and family will look down on me, but I need to have a life, too, and I am having a hard time coping with the stress. Are there other forms of help available, and how do you know when is the right time to make what I consider to be the drastic move of admission into a facility?
Answer: As you and others who have "walked in your shoes" have learned, the impact of caring for a loved one with Alzheimer's or related dementia can be disastrous to the caregiver. In addition to feeling unduly burdened in the role of the caregiver, family caregivers face poorer health and higher levels of depression when compared to the general population.
That's why respite care, that is, providing family and primary caregivers with intervals of relief from the demands of their roles as caregivers, is essential in helping them cope with the demands associated with providing care. Respite that provides caregivers with the opportunity to meet their other needs comes in a number of forms: in-home care by another caregiver; short or overnight stays in a residential care facility; or day services which you describe as "adult day care."
In researching your question, we came upon The Brookdale National Group Respite Program, a network of social model day service programs that provide opportunities for those with Alzheimer's disease to meet in groups outside their homes. Stressing socialization, recreation, and maintenance of functioning, the program has helped fund 221 sites in 36 states, of which 198 are operational.
In 1997, more than 2,100 families received more than 566,000 hours of respite care and group socialization through 136 sites. These programs also provide caregiver support groups, individual support and counseling, assessments, referrals, and education and training for local community members.
According to Brookdale statistics, nearly three-fourths of program participants are over age 75, and 62 percent are women, while, on average, caregivers are over age 62, 76 percent of whom are women. Most caregivers had been caring for a loved one at home for more than three years before seeking respite services.
If the available forms of respite services in your area are not giving you the relief you need, then it may be time to look at other options, which may include admission into an appropriate facility or hiring a full-time or part-time live-in caregiver. A lot depends on your financial wherewithal because many Alzheimer's patients do not qualify for level of care necessary for Medicaid nursing home services. In the final analysis, since you have been providing the care, you need to make your decision based on what is best for you and your wife, not based upon what others may think of you. We suggest that you contact a geriatric care manager in your locale who might be able to help you locate other resources and make this difficult decision.
Taking the NextStep: To find out more about the Brookdale program or to find one in your area, either write Brookdale National Group Respite Program For Alzheimer's Families at 2320 Channing Way, Berkeley, California 94704, or call 510-540-6734.
Jan Collins is an award-winning writer and editor. Jan Warner is a matrimonial, tax, and elder law attorney. Send questions by e-mail to janwarner@nextsteps.net or by mail to P.O.Box 11704, Columbia, South Carolina 29211.
