Question: Since my husband was diagnosed with Alzheimer's disease at age 55, it didn’t take me long to learn that while our children and friends mean well when they offer to help, I am basically alone as his caregiver. His disease has progressed rapidly, and I began using an adult day care center near me. On one hand, I want to keep him out of a nursing home for as long as I can, but on the other, I must keep my health and sanity. But as his condition deteriorates, I find myself taking him to adult day care more often.

I feel guilty when I start thinking that it would be easier for me to place him in a facility, but I just can't seem to do it right now. I feel that friends and family will criticize me, but I need a life, too. I am having a very hard time dealing with the stress and guilt. I don’t think a psychiatrist will help me, but I do need some help in deciding when will be the right time to make the drastic decision to move him into a facility.

Answer: As you and millions of others who are primary caregivers for loved ones with Alzheimer's or dementia have learned, the impact on the caregiver can be devastating. In addition to feeling unduly burdened, you and other family caregivers face poorer health and higher levels of depression and stress. While the vast majority of persons diagnosed with Alzheimer’s disease are over age 65, a much smaller percentage, such as your husband, are afflicted with early onset Alzheimer’s. That means you will probably continue to be a caregiver for a longer period than most.

That’s why respite care – a variety of ways in which to provide family and primary caregivers with intervals of relief from the demands of their roles as caregivers -- is essential to helping you cope with the persistent demands and have an opportunity to fulfill your needs. Respite comes in a number of forms: in-home care by another caregiver; short or overnight stays in a residential care facility; or even day services which you describe as "adult day care."

We believe that caregivers should begin thinking about respite services very early in the process, even before it’s thought they may help, because respite is much more helpful if used before the caregiver becomes overwhelmed and fatigued by the incessant demands and responsibilities that come with the territory. In fact, most caregivers who have used respite services agree there are benefits not only to them, but also to the loved one.

There are many options available for in-home services, including companion services, personal care, household help, and, when required, nursing care.

In-facility respite at assisted-living and nursing homes offers not only overnight, but also weekend and even longer stays for the person with Alzheimer’s or other dementia so that the caregiver will have longer to “recharge.” Included in the cost are meals, assistance with activities of daily living, and the like. These services are also available on short notice where, for example, a caregiver becomes ill or must go out of town for a short period of time.
The adult day care you use probably includes social activities, meals, recreation, transportation, and possibly other services that are beneficial to the resident.

Keeping your husband at home will maximize his ability to retain as much independence as possible, and respite is certainly appropriate. No matter how your respite is provided, it will help both you and your husband.

Taking the NextStep: For more information about respite in your area, contact your state or county Department on Aging, Alzheimer’s Association or click here , or religious or faith-based organizations in your area. On the Internet, you may find www.respitelocator.org or click here helpful.