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Hospice Care

Why Respite Breaks Are Important for Caregivers

Caring for a family member or friend who is seriously ill or in hospice can be spiritually and emotionally rewarding, but the demands of continuous caregiving can take their toll. When you are stressed, you may not be as prepared to fulfill your caregiving duties, or you may become ill yourself. 

Caregiving can also be socially isolating at a time when it is even more important to draw on the strength and support of others. Respite care can give you the break you deserve while allowing your loved one to be cared for safely. 

You should consider respite services much earlier than you think you will need them. Respite will be most helpful if you use it before you become exhausted, isolated, and overwhelmed by your responsibilities. 

Types of respite  

Respite may be provided in your family’s home by aides from home care agencies, by friends or family members, community volunteers like senior companions or university interns, or by volunteers from your faith community.  

If you are caring for someone who is in hospice or palliative care, Medicaid and Medicare funding restrictions may limit you to certain out-of-home options. If you are caring for a child, pediatric palliative care homes exist in some states. In addition to respite, these homes provide transitional care after release from an acute care facility, and compassionate medical care for the child. 

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For adults, an available bed in a healthcare facility or nursing home may provide respite for families who require extended respite options and whose family member requires skilled care.  

Paying for respite

 If the person in your care is eligible for Medicare Hospice, Medicare will pay for respite for family caregivers on an occasional basis for up to five days for each respite period. However, respite must be provided in a Medicare-approved facility (like a hospice inpatient facility, hospital, or nursing home). Your hospice provider will arrange this for you.  If the care recipient is Medicaid eligible, hospice may be available in some states, and similar respite benefits and restrictions apply. 

If you elect to keep your loved one at home while you take a break, you may have to pay out-of-pocket, however, you may find payment assistance and respite providers from your State Lifespan Respite Care Program or State Respite Coalition. Lifespan Respite programs or coalitions most often will provide consumer-directed respite voucher programs that allow you to hire, train, and pay your own respite providers, including family, friends, or neighbors, or allow you to select from a vetted list of provider agencies.  

Not every state has a Lifespan Respite Program or Coalition, and funds for direct services may be limited. Visit the ARCH National Respite Network and Resource Center for more information at archrespite.org.

Respite may be available through the National Family Caregiver Support Program if you are caring for an adult over age 60, someone of any age with Alzheimer’s or other dementias, or if you are a parent or relative caregiver over age 55 caring for an adult child with a disability. This program is administered by your local Area Agency on Aging, or Aging and Disability Resource Center. Contact the Eldercare Locator for more information at eldercare.acl.gov. 

If your loved one is a Veteran, respite may be provided. Contact the VA Caregiver Support Line at (855) 260-3274.

For more resources on how to find, use, and pay for respite, visit the ARCH National Respite Network and Resource Center athttps://archrespite.org/consumer-information.

Jill Kagan, Director, ARCH National Respite Network and Resource Center, [email protected]

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