Jewish World Review Dec. 8, 2008 / 11 Kislev 5769

Dementia patient slips through the cracks

By Jan L. Warner & Jan Collins

http://www.JewishWorldReview.com | Q: Since my mother, now 71, was diagnosed with dementia and probably Alzheimer's three years ago, she has steadily declined. At first, my father was able to take care of her with part-time help from me; however, as time has passed, she has become too much for him to handle. And when he suffered a stroke and then a fatal heart attack, Mom's care became my total responsibility.

With my husband's agreement, I stopped work and moved Mom in with us; but I soon found that I could not meet her needs, especially when she became aggressive and, on occasion, physically abusive to me and our teenage son. We never knew what was going to set her off, and it got to the point that the stress was causing problems in my marriage and with my son, who could not bring friends to our home. Even medication did not help.

So my husband and I decided to try to find a suitable place for her to stay and have continued to strike out. This is why I am writing you. Even though Mom receives nearly $3,500 each month from Social Security and my father's pension, and has a home valued at $125,000 and investments of $85,000, she has been denied admission to two nursing homes and three residential-care facilities. I have learned that Medicare will pay nothing for her care. And even if she had no money, we are told that because she does not need "nursing care," Medicaid would not provide for her. It seems that people like her are slipping through the cracks. We, as a family, are having a very difficult time coping, and we know that she is miserable. With all we read about care for the elderly, why do we find ourselves in this situation, and what can we do?

A: 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.

Unfortunately, our health care system is not prepared to deal with the millions of Americans who suffer from Alzheimer's disease and other forms of dementia. And with estimates of nearly four times that number by 2050, the future does not look bright unless there is a paradigm shift in the way care is provided.

While nursing homes were designed to care primarily for people with chronic, long-term medical problems of the body, not the mind, some estimate that two-thirds of the residents in these facilities suffer from some form of dementia, and a large percentage of them are very challenging to care for.

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 and comes in a number of forms: in-home care by another caregiver; short or overnight stays in a residential-care facility; or day services often referred to 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 a number of sites in many states. These programs also provide caregiver support groups, individual support and counseling, assessments, referrals, and education and training for local community members.

According to Brookdale, 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 meet level-of-care requirements necessary to receive 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 your mother and family.

Taking the NextStep: We suggest that you contact a geriatric care manager (www.caregiver.org) in your locale who might be able to help you locate other resources and make this difficult decision. To find out more about the Brookdale programs or to find one in your area, either write Brookdale National Group Respite Program For Alzheimer's Families at 2320 Channing Way, Berkeley, Calif. 94704, or call 510-540-6734.