Q. 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 daycare 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. 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, yet 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, however, I do need some help in deciding when will be the right time to make the drastic decision to move him into a facility.
A. 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 may be devastating. In addition to feeling unduly burdened, family caregivers face poorer health and higher levels of depression and stress. While the vast majority of people diagnosed with Alzheimer’s disease are older than 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 — ways to provide family and primary caregivers some relief from their duties 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.”
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 when, 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.
Most caregivers who have used respite services agree there are benefits not only to them, but also to the loved one. We believe that people should begin thinking about respite services very early in the caregiving process because respite is much more helpful if used before the caregiver becomes overwhelmed and fatigued by incessant demands and responsibilities.
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.
For more information about respite in your area, contact your state or county Department on Aging, Alzheimer’s Association (www.alz.org), or religious or faith-based organizations in your area.
Or you can go to the National Respite Locator Service Web site (www.respitelocator.org) for help.
Jan Warner is a member of the National Academy of Elder Law Attorneys and has been practicing law for more than 30 years. Jan Collins is editor of the Business and Economic Review published by the University of South Carolina.