What is respite care, why do family caregivers need it, and how can they get it?
The expression, “You can’t pour from an empty cup” is of unknown origin, but the image is clear: If you don’t take care of yourself, you can’t help others.
The Family Caregivers Alliance notes that there are 43.5 million caregivers in the US and that “a vast majority of caregivers (85%) care for a relative or other loved one.”
Caregivers must take care to make sure they are healthy. Yet, many do not even go to the doctor. According to the Caregiver Action Network website, “nearly three quarters (72%) of family caregivers report not going to the doctor as often as they should and 55% say they skip doctor appointments for themselves.”
The Family Caregivers Alliance warns against ignoring your own health and wellbeing. It uses the analogy of safety instructions given by flight attendants before planes take off: “Put on your own oxygen mask before you assist anyone else.” Translation: Only when we first help ourselves can we effectively help others.
One very good way to take care of yourself is to take a break – a respite – from caregiving.
What is respite care for caregivers?
Respite care is taking a break from caregiving – it doesn’t mean discontinuing caregiving.
“It gives caregivers the chance to relax, rejuvenate and recharge their batteries…to re-evaluate their situation, and re-identify as the caregiver they want to be,” Elisha Beard, the supportive services coordinator for the Adult Day Program at the Benjamin Rose Institute on Aging, says in a Forbes article.
While taking a temporary break is often good for one’s mood, attitude and mental health, many caregivers may feel guilty. They may feel that they don’t deserve a break or that they are not doing enough for their loved one.
In fact, an article on Caregiver.com asks “why is it that the words ‘respite’ and ‘guilt’ seem to go hand in hand? Why do caregivers feel we are somehow failing our loved one by admitting that we need help, need time to recharge our batteries or just need time to play a bit?”
Yet, caregivers should try to push aside feelings of guilt. Taking a break from your caregiving duties and finding respite care may help you refocus, recharge, and relax.
“As a caregiver it is important that we recognize that it is OK to take a break from our caregiving duties,” according to the Caregiver.com article. “It is OK to feel tired, and want to have a break from caregiving! Not only is it OK, it is your right! You are allowed to stay healthy both physically and emotionally.”
Setting up respite care
First, caregivers should be sure that both the person in their care AND the temporary provider are ready for the change by:
- Informing the person being cared for about those who will be providing their care
- Providing a detailed schedule and emergency contact information
- Listing all instructions and details on menus, personal care and preferences, and specific emergency actions.
Next is figuring out what kind of respite care you need. There are as many kinds of respite care as there are needs, both in-home and out-of-home and for children and seniors. A good place to start may be the ARCH National Respite Network and Resource Center (ARCH), which helps connect caregivers to respite care and information.
“To be most effective, you should consider respite services much earlier than you think you will need them,” according to the ARCH website. “Respite will be most helpful if you use it before you become exhausted, isolated, and overwhelmed by your responsibilities. Respite services can be beneficial, meaningful, and enjoyable to both the caregiver and the care recipient.”
The ARCH website offers the following publications:
For children’s respite:
- “A Practical Guide to Respite for Your Family by Molly Dellinger-Wray and Monica Uhl with the Partnership for People with Disabilities (formerly the Virginia Institute for Developmental Disabilities), a university affiliated program at Virginia Commonwealth University
- Get Creative About Respite – A Parent’s Guide and Get Creative about Respite – What You Need To Know About Me from the Connecticut Lifespan Respite Coalition.
- Finding Caregivers and Respite Providers compiled by the SC Respite Coalition and Family Connection
- The Respite Notebook developed by the Child Neurology Foundation (updated 2017)”
For adults and aging individuals:
- “Respite Care Guide: Finding What’s Best For You – The Alzheimer’s Association
- National Adult Day Services Association (NADSA) guidelines and checklist for adult day service programs to help in choosing a center.”
Other options for caregivers besides respite care
“Respite care helps family caregivers restore balance in their lives. It allows caregivers to take the time to recover from the stresses of caregiving and gives them the flexibility to take care of other important aspects of their lives. Respite care is a necessary tool to support a caregiver’s success,” according to an article in Hospital News.
Respite care is not the only option for caregivers. Many communities offer home care services for seniors, and adult day care services, as well as camps and other facilities for children. Additionally, there are local organizations providing different types of help – including family therapy, support groups, advocacy, and legal support.
One overlooked area may be a caregiver’s relationships with other loved ones. For example, marriage counseling may be helpful. According to a Washington Post article, relationships and marriages can face strain and stress when parents are caregiving a child with special needs. The demands facing caregivers should be addressed as in any marriage, through communication and commitment. And, if that doesn’t work, through counseling.
Additionally, it is important for caregivers – who are faced with significant mental, physical, financial, and other challenges on an ongoing basis – take care of their own health. Caregivers who are feeling sick or showing signs of exhaustion should visit their healthcare provider before these symptoms turn into long-term complications.
For example, while sleep is a critical factor in ensuring one’s mental and physical health, it’s often a problem for caregivers.
“Not getting enough sleep is a major cause of illness and stress in caregivers. Exhaustion is one of the main complaints, leading to irritability and then inappropriate anger which then leads to more guilt,” according to the Family Caregiver Alliance website. “Talk with your physician about medication for either yourself or your loved one to help with sleeping through the night.”
Finding the right help and exercising self-care is critical. You need to “refill your cup” to ensure you are taking the best care of your loved one – and yourself.
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