Alzheimer's blog

Respite care helpful but difficult option

By Angela Lunde June 11, 2008

My sincere thanks once again to those of you sharing your stories. There are probably hundreds who are reading and relating to what you have to say.

Obviously, there are no easy answers to the epidemic of Alzheimer's disease that brings with it nearly 10 million Americans providing 8.4 billion hours of unpaid care (mostly family). As stated in our previous dialogue, some of you find relief by attending support groups if they are available, others mentioned that writing and venting provides benefit at some level, others have suggested the importance of respite.

Once again, I realize obtaining respite care is easier said than done, there can be numerous obstacles, including our own reluctance (feelings of guilt or abandonment are common). However, none of us are equipped physically or emotionally for 24/7 caregiving. I would appreciate hearing some of your stories and experiences around respite care.

Here is a small list of the types of services (both paid and volunteer) that may be available in your communities, as well as some excellent resources and Web sites to check out.

  • Adult day programs. There comes a time in the disease of Alzheimer's that leaving the person at home, even for short periods, is not an option. At the same time, taking them out only confuses and overwhelms them and you. Day programs can offer the person with dementia a safe and social environment while giving a predictable and needed break from caregiving. See link below for more on adult day programs.
  • In-home paid care services. In-home services can be available in a variety of ways. Companion services provide company for the person with dementia while helping to facilitate and supervise activities. Personal care or home health aide services assist with bathing, dressing, toileting and exercising. Homemaker services help with laundry, shopping, and preparing meals and skilled care services help with medication and other medical services. Many agencies will offer many or most of these services. See link below for respite care in your community.
  • Student or intern. If your community has a college you can inquire about students who may be interested in an opportunity to provide companionship and supervision to a person with dementia. I know one caregiver who found a student to provide respite and friendship to the person with dementia for more than two years.
  • Volunteer through church/place of worship. Parish nurse and home respite programs are organized formally or informally at many churches. For example, at my church if a member informs our 'Care Coordinator' that they need respite care a few hours a week, a call is made to individuals from the congregation who have expressed a willingness to help.
  • Department of Social Services. Check with your county social service agency. In-home community care programs may be available and are based on income.

Bottom line: Getting or accepting respite care often means that you can keep your loved one at home longer, which for most of the families I have met, is the ultimate goal.

Remember, that getting a break yourself gives you the opportunity to rejuvenate, pay attention to who you are outside of your caregiving role. This period of respite often helps you to be a better caregiver. Think of respite as a gift not only to yourself by also to the person you are caring for.

Jun. 11, 2008