Substitute caregivers: respite when family caregivers need a break

Calm and centered caregiver series     

Family caregivers, do you need someone to substitute for you? If you take care of a loved one who cannot care for themselves, ‘respite’ is the official name for help so you can take a break.  Even if you find caregiving to be a blessing, research indicates family caregivers who do take a break experience less physical and emotional health challenges. Perhaps you must have some time off from caregiving, to have elective surgery, celebrate a wedding, or attend a compulsory work-related conference.  But if you took a break, who would care for your loved one?

Just needing time off is reason enough for respite care according to the caregivers interviewed for “Caregiving in the US 2015, Focused Look at Caregivers of Adults Age 50+. Live-in family caregivers, those whose loved ones require many hours a day of caregiving, and those who care for someone with dementia, including Alzheimer’s, often have the greatest need for respite to rest and rejuvenate.

Finding a substitute caregiver

aid pushing chair, no faces. no credit neededHere’s the tricky part – taking time away from family caregiving requires finding somewhere or someone else to care for your loved one. If your family is supportive, you might be able to arrange a temporary stay at another family member’s home or have one of your family members stay over for a while. A true friend may help out, too.

If no family or friends are capable and willing, professional substitute care is possible. If your loved one lives at home, a short stay in a private nursing home, home care services including nurses, aides and companions, or even a few hours at adult day care might give you the time you need.

If your loved one is already in long-term care, perhaps a friend or family could take over your visiting schedule. A conversation with the nurse manager and the unit social worker about your need for a break might be helpful. Part of this conversation might include when, where, and about what you would like to be notified to insure you stay involved but aren’t overwhelmed with telephone calls.

cartoon, aid and woman, no credit neededWhen you are looking for help so you can have some time away, use the term “respite care.” A recent search online for respite care resulted in 42,200 sites. I know you don’t have time to read through them all, so here’s a few highlights of what might be available. Not knowing where you all live, I focused on national resources, especially those that will lead you to local services. If your situation is complex and you don’t know where to begin, AARP offers “A Caregiver’s Guide to Creating a Respite Care Plan.”

Respite Resources

Eldercare Locator

Who are they?

A federal Department of Health and Human Services resource center for older adults and their caregivers

What do they offer?

Eldercare resources, a respite care fact sheet, excellent questions to ask when evaluating respite care services and substitute caregivers, and links to resources in your local area via the Administration on Aging.

Website: https://eldercare.acl.gov/public/resources/Factsheets/Respite_Care.aspx

ARCH National Respite Network and Resource Center

Who are they?

ARCH stands for access to respite care and help. “The mission of the ARCH National Respite Network and Resource Center is to assist and promote the development of quality respite and crisis care programs; to help families locate respite and crisis care services in their communities; and to serve as a strong voice for respite in all forums.”

What do they offer?

Numerous links to respite providers, but first read their guide titled the ABCs of Respite for information about how to choose and pay (or not pay) for respite care.

Website:

https://archrespite.org/respitelocator

Family Caregiver Alliance

Who are they?

A service of the National Center on Caregiving, “The first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care for loved ones at home”

What do they offer?

The Family Care Navigator, a state by state searchable database of programs and services. Search for the term “respite” on their site for additional resources.

Website:

https://www.caregiver.org/family-care-navigator

Alzheimer’s Association

Who are they?

A nonprofit voluntary health organization focusing on Alzheimer’s care, support and research.

What do they offer?

Information and referrals via the Caregiver’s Center and detailed information about Respite Care. For specific services, contact the Alzheimer’s Association in your state. You can find their contact information at this link: https://www.alz.org/apps/findus.asp

Website:

https://www.alz.org/

Department of Veterans Affairs

Who are they?

The federal agency for veterans’ healthcare and benefits

What do they offer?

Information about eligibility and services for up to 30 days of respite care for eligible veterans, including home care services or care facilities.

Website: Specifically for respite care, https://www.va.gov/GERIATRICS/Guide/LongTermCare/Respite_Care.asp

Medicare.gov

Who are they?

The official US government site for Medicare

What do they offer?

Information about eligibility and services regarding hospice and respite care for Medicare recipients

Website: specifically for hospice and respite care, https://www.medicare.gov/coverage/hospice-and-respite-care.html#1378

National Adult Day Services Association

Who are they?

A professional trade association for adult day services

What do they offer?

Searchable database to find adult day services in your area, and a section titled ‘For caregivers’ that has information about service options, questions to ask, and how to arrange a site visit.

Website:

https://www.nadsa.org/locator/

mother, daughter. no credit neededDo it – take a break!

Maybe your current need is short term respite for a quick break, surgery, family event, or work obligation.  But now that you’ve learned about respite, consider how you might be able to take a break more often. It’s good for you, and the one in your care, too. In these related blogs you’ll find more resources for you:

Learn about overcoming the challenges to taking care of yourself: “Respite relief from compassion fatigue”

Learn about planning and enjoying caregiver vacations: “Away with you! Respite travel for family caregivers”

Learn how to take a break in your own home: “Mini me-time for family caregivers”

Readers, please tell us your stories and your challenges about finding caregiving help for your loved one. Other readers will benefit from your experiences and wisdom. Are there any good resources for respite you can share with us?

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