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    Day 25: Respite: An Important Part of the Caregiving Journey

    November 24, 2011 By Edrena Harrison, ACSW, Information Programs Specialist, Family Caregiver Alliance Have you ever wondered why before each plane takes off, a flight attendant prepares adult passengers, in part, by instructing them to put oxygen masks on themselves first and then on children in their care? One reason, of course, is if an adult passes out, his or her loved ones’ safety will be at risk. They also inform passengers about resources on the plane for the duration of the trip. The attendant provides both as part of planning for the journey – to be reminded of the “big picture” and what resources are available to help – and empowering others to act. Family caregiving is challenging work. Caregivers often assist their loved ones on a daily basis with bathing, dressing, meal preparation, wound care, medication management and responding to more demanding behaviors of children and adults with certain disabilities and/or diseases. Their health can suffer from the stress of daily responsibilities and the emotional toll of watching a disability’s effects on or disease’s progression in a loved one. It is not unusual for caregivers to provide care every week and month for years at a risk to their own health. Caregiving can last from less than a year to more than 40 years. In a 2003 study, caregivers were found to spend an average of 4.3 years providing care (Family Caregiver Alliance, 2009). If you are a caregiving spouse between the ages of 66 and 96 and are experiencing mental or emotional strain, you have a risk of dying that is 63 percent higher than that of people your age who are not caregivers. Other studies estimate that 46 to 59 percent of caregivers are clinically depressed (Family Caregiver Alliance, 2003). Most caregivers are not well-prepared for their role and try to provide care with little or no support, yet more than one-third of them continue to provide intense care to others while suffering from the negative effects on their own well-being and health (Family Caregiver Alliance, 2009). Every caregiver needs a break or respite at some point to relax and rejuvenate if he or she is to last. Most people treat the caregiving role as a sprint – they think they can and must do everything themselves. It is possible to do that for weeks or even months – many have. However, according to Dr. Mark Jaffee, “There tends to be a discrepancy between how long a family caregiver thinks he or she will be providing care and how long the care recipient will actually need assistance” (Take Care!, Summer 2009). Remember that the average caregiver spends more than four years in the role. Perhaps a better approach should include viewing caregiving as a marathon or a journey, planning for the long term and pacing oneself accordingly from the start. Taking care of oneself is one of the most important things a family caregiver can do. The person in his or her care needs a healthy caregiver. So beware of your physical, psychological, social and spiritual needs. You will need to replenish yourself along the way so it is important to identify ways to share the care or obtain breaks periodically. This is why respite is so important.

    What is Respite and What are Some Options? The Federal Respite Care Act was authorized by the U.S. Congress in 2006. The Act defines respite care as “planned or emergency care provided to a child or adult with a special need in order to provide temporary relief to the family caregiver of that child or adult (Administration on Aging, 2009). In essence, respite care can be viewed as relief or a temporary break from caregiving responsibilities and may vary in type and duration. These are some examples:

    • Agency employees (such as home health aides), volunteers from faith communities or nonprofit organizations, or professional sitters may come to one’s home to give a caregiver a break for a few hours;
    • Arrangements may be made for the care recipient to stay at an adult day center for several hours a day;
    • Care recipients may be accommodated in a supervised setting, such as a residential care facility for a few days;
    • Reliable relatives, friends and neighbors may be asked to provide care or assistance in specific ways, such as visiting for an hour or two, preparing meals or taking the care recipient for an appointment;
    • Your own interests, hobbies, etc. should be explored or maintained. Plan for ‘me time’ regularly. Exercise, sleep, pray, keep a medical appointment, see a play, write, meditate, go dancing, etc.;
    • Attend a support group to learn from and share info, and get involved in affirming and relaxing activities; and
    • Use national and local resources to find out how to pay for some help.

    As Kelley Reese, Regional Coordinator at the Well Spouse Association, has stressed, “Caregiving takes on many forms so ‘respite’ can mean different things to each individual. Define your ‘normal’, know yourself and then find the right respite for you. For some it’s finding solitude, for others it’s socialization and sometimes it’s both. Respite can be five minutes or a week, so don’t confine yourself to one solution” (Well Spouse Association, 2011)

    What are the Next Steps?

    It may be hard to think of yourself and your needs at this time, but if you don’t, your life will be consumed by your responsibilities and the risk for burnout will increase. Therefore, respite is not a luxury, reserved for some – it is a necessity for all caregivers. It is healthy to ask for help and to take time for yourself. As a family caregiver, it may help to keep in mind the Caregiver’s Bill of Rights and these familiar words, “ … grant me the serenity to accept things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” Establishing or expanding respite for yourself is one thing you can do. We encourage you to reach within for the courage. So, as you prepare your next “Things to Do” list today, put “Prepare (or Expand) My Respite Plan” at the top of the list and then contact the following sites for information about respite options in your area:

    References

    Administration on Aging (2009). Facts: The Lifespan Respite Care Program. Washington, DC: Author. https://acl.gov/sites/default/files/programs/2018-05/Fact%20Sheet_Lifespan_Respite_Care_2018.pdf (updated)

    Caregiver’s Bill of Rights http://www.co.delaware.ny.us/departments/ltc/docs/CG_Caregiver_Bill_of_Rights.pdf

    Family Caregiver Alliance (2009). Fact Sheet on Caregiving. San Francisco: Author. https://www.caregiver.org/caregiving

    Family Caregiver Alliance (2003). Fact Sheet on Taking Care of You: Self-Care for Family Caregivers. San Francisco: Author. https://www.caregiver.org/taking-care-you-self-care-family-caregivers

    “Help” Is Not a Dirty Word. (2009, Summer).

    Caregiver Action Network, Take Care! Self-care for the Family Caregiver. 18, 3-4.  https://caregiveraction.org/

    Well Spouse Association ad abstract. (2011). The many faces of respite: 2011 National Lifespan Respite Conference Program. https://wellspouse.org/2011-wsa-in-the-news/wsa-presents-at-the-national-lifespan-respite-conference.html

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    Day 25: Respite: An Important Part of the Caregiving Journey by Edrena Harrison, ACSW, Information Programs Specialist, Family Caregiver Allianceis licensed under a Creative Commons Attribution-NoDerivs 3.0 Unported License.