Respite: A Lifeline For Those Overwhelmed By Caregiving
By Maria Basso Lipani, LCSW
© 2008-2010
Summary: If you have been providing care to a family member or friend for a long period of time, particularly if that person has Alzheimer’s or another form of dementia, you may be feeling overwhelmed. “Caregiver burnout” as it’s sometimes called, is a real and very serious thing. The physical and mental exhaustion that can result from providing care on a day-to-day basis can lead a person to wonder if he/she can continue. Respite can help significantly. There may be several respite services in your own community.
Dear Maria: My husband has Alzheimer’s and I am trying my best to care for him at home. We promised each other years ago that neither of us would put the other in a nursing home and I have somehow managed to keep this promise for the last eight years. But, I am exhausted now. I’m 83 years old – no ‘spring chicken’. My only breaks come when my children visit from out of town, but this is no longer enough, although I wish it was. At this point, I’m not sure where to turn. Friends have suggested hiring an aide through a home care agency, but I am reluctant. My husband and I don’t have a lot of money and I really don’t want to get locked into a set schedule. Most days I’m okay, but every now and again I’d really like to be able to run a few errands and leave him at home without having to worry. What do you advise? Margaret, Topeka, Kansas
Dear Margaret: Your e-mail gives me an excellent opportunity to define respite for those who may not be familiar with the term and to talk about the benefits of a respite program for the millions of family caregivers just like you.
According to a Merriam-Webster online search, the term “respite” refers to: “an interval of rest or relief”. More simply put, “respite” means to take a break. In my almost ten years in the field of Social Work, I have yet to meet a family caregiver who could not have benefited from respite. This is especially true for those who are providing care to a loved one with Alzheimer’s or another dementia since the physical and emotional demands of this type of caregiving are especially great.
Whether the break you take is for a few hours or better yet, a few days, you should think seriously about finding respite services soon. The most important thing a family caregiver can do to avoid burnout is to listen to what their bodies are saying. Getting to the point of exhaustion is never a good thing.
Not many people know this, but the Federal Government provides money to each state to pay for respite services for family caregivers. Typically, this type of help is offered a few hours a week and comes in the form of a home health aide through a local home care agency (this kind of 1:1 help is sometimes called ‘individual respite’). If your community has one, respite can also come in the form of hours in an adult day program for those with dementia (respite in a group setting like this is sometimes called ‘group respite’).
While the federal funds that pay for respite are limited and the service itself is temporary, it is certainly worth exploring this option. To do so, you’ll need to find out which social service agencies in your area receive this funding. To start, contact Elder Care Locator at 800.677.1116 or click here to go directly to their Web site. Then ask/search for your local Area Agency on Aging (AAA). This is the entity that distributes the funds locally and can tell you which organizations have money for respite. Once you know this, contact the program that covers your neighborhood to find out if you qualify.
Some nursing homes also offer a respite program to families who need overnight supervision for a loved one. Often times the stay can be one day or several weeks. The cost of this kind of respite is typically several hundred dollars, but sometimes federal funds can be used to pay for this as well. If you’re interested, be sure to ask.
In addition to providing a much-needed break, I think respite also offers an opportunity to “try on” the idea of having help. Even just a few weeks of taking an occasional break from caregiving is enough to help you see if this is truly enough, or whether more assistance may be needed.
While family cares for the majority of those with Alzheimer’s or another dementia at home it does become significantly more challenging as the illness progresses. If you find that respite is helpful but you are still feeling exhausted or overwhelmed, don’t ignore this. A regularly scheduled break several times a week or perhaps even every day may be what you need to keep going. If that’s the case it would be worth every penny.
