Respite Care

January 3, 2011

There usually comes a time, either temporarily or permanently, when a caregiver needs respite from caregiving.  There is no shame in this and there should be no guilt.  The goal is to find a balance between what is good for the dementia patient and what is good for the caregiver.  That matters.  Statistically, caregivers of dementia patients die first.  Don’t contribute to that statistic.

University of Alabama Athletic Director, Mal Moore, tells of his experiences over about 20 years as an Alzheimer’s caregiver to his wife, Charlotte.  For most of that time, he was an active assistant coach, one of the most demanding jobs imaginable, and kept her at home.  He would come home for a few minutes several times a day to check on Charlotte.  As most caregivers do, he became isolated from his friends, since he and Charlotte couldn’t do things as a couple anymore and he couldn’t leave her more than was necessary.  Their daughter lived across the country and no family lived nearby.  Being a private man, he kept his difficulties in caring for Charlotte to himself.  Then one day, he found himself in the hospital emergency room with a heart attack.  When the ER staff asked whom they should call, he had no answer.  He had grown that isolated.  He had carried the burden himself, but the stress of doing that had given him a heart attack.

Some caregivers get a wake-up call like this.  Some are not as fortunate.  Remember to take care of yourself.  Caregiving is a marathon, not a sprint, so pace yourself.  There are often options available for respite care.  Utilize them.  Here are some ideas for temporary care:

Family Respite Care:  There is no law that says you have to bear the burden alone.  Often, family members want to help.  Let them.  Give yourself some time off.  When possible, it is better for the family member to come to your home, rather than taking the dementia patient out of his familiar environment into another.

Sitters:  Good, trained sitters are difficult to find, but completely invaluable when you find them.  To find one, start with friends who may have had similar needs.  Often, they can recommend someone.  There are bonded sitter services available, but the quality of the sitters is very inconsistent.  If you attend worship services, ask the minister or rabbi for a recommendation.  There may be someone in the faith community who would be suitable.  Sometimes, dementia assisted living units or nursing homes will have employees who are willing to work for a few hours at a time as sitters.  Your local Alzheimer’s support organization also can serve as a resource for this type care.  When you find a sitter, I recommend having them sit first with your loved one while you are in the house.  That way, you can monitor how they interact with the patient before your leave her alone with the sitter.

Facility Respite Care:  Dementia Assisted Living units, nursing homes and hospice units, if they have extra space, will sometimes offer respite care for a period of a few days to weeks.   Check with the local Senior Citizen Agency, Alzheimer’s support organization or with your physician for respite care resources in your area.

Adult Daycare:  This is a wonderful option when it’s done well and when it’s available!  Evaluate any daycare center before leaving your loved one there.  What is a day like there?  Do they offer art and music therapy?  How much is the TV utilized? (Hopefully, not at all to very little!)  Spend some time in the center.  Is it fun?  How do the employees treat the clients?  You are looking for a happy, cheerful, affirming and cognitively stimulating environment for your loved one.  Dementia daycare can be an incredible help to caregivers, especially those who need / want to stay in the workforce while caring for their loved one at home.  Some states offer vouchers or grants to help pay for the cost of care.  The VA also may help if your loved one is a veteran.  Check with the local Alzheimer’s support organization.

I apologize for being repetitive, but statistically, the dementia caregiver dies BEFORE the patient.  It’s that stressful.  If you want to survive caregiving, allow yourself respite time.  You do not have to be Superman or Wonder Woman.  Please take care of yourself.

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2 Responses to “Respite Care”

  1. Jill Kagan says:

    You are not along. There are 65 million family caregivers in the US who provide 80% of the nation’s long term care. Respite is critical to keep this backbone of support intact. To find respite, visit the ARCH National Respite Locator Service at http://www.respitelocator.org, or your local State Respite Coalition . The federal government now funds 24 States to establish Lifespan Respite programs to help family caregives navigate the labyrinth of services, regardless of the age or disability of the care recepient. Contacts for coalitions or Lifespan Respite programs can be found at http://www.archrespite.org. To see more about buidling a national respite system, see the NY Times New Old Age blog at http://newoldage.blogs.nytimes.com/2010/12/31/wanted-a-national-respite-system/. Make a comment at the NYT site and let them know you want to see more coverage on this issue.

  2. Great read thank you for the write-up, I am doing a whole lot of research into this

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