Caregiving in hospice is primarily — and rightly — focused on the well-being of the patient. But what about caring for the caregivers who dedicate an enormous amount of time and energy to their loved ones’ quality of life?
It is not unusual for caregivers to experience caregiver burnout, with 72% of family caregivers reporting stress and 36% reporting depression. 1 Hospice care brings its own emotional toll to caregivers throughout a loved one’s end-of-life journey.
Respite care is a temporary form of care that can relieve hospice caregivers by providing them time to recharge.
If your loved one is receiving hospice care and you are currently overwhelmed or seeking assistance with your caregiver duties, read on to see how respite care might be the solution.
What Is Respite Care?
The definition of respite care is a temporary, short-term service designed to provide primary caregivers relief from their caregiving responsibilities. It can be for a few hours or a few days, depending on your needs as a caregiver, the type of respite care chosen and the medical needs of your loved one.
What Are the Types of Respite Care?
There are a few different ways that hospice respite care is available to caregivers. Some are informal, while others are more formally offered as part of the Medicare hospice benefit or through private pay options.
Informal Forms of Respite Care
Your ideal hospice respite services will depend on the type of care needed. In some situations, a less formal option may be appropriate. For example, if other family members share caregiving responsibilities, you might ask them to help for a while.
If other family caregivers are unavailable, you may be able to ask friends to help. If you choose this option, you’ll want to take the time to provide them with a level of teaching to make sure they know how to provide care. This can create work for you as a caregiver, too — which may feel like too much if you are already overwhelmed.
An alternative may be seeking the help of volunteers familiar with hospice care. Hospice agencies like Amedisys offer trained volunteers to spend time with patients, which can help alleviate pressure on caregivers.
Official Forms of Respite Care
Respite care is one of the four levels of hospice care and can be made available as part of the Medicare hospice benefit when caregivers need a break. With respite care, patients are admitted to a long-term care or other inpatient facility with 24-hour nursing available for up to five days/five nights. 2 The patient continues to have access to all hospice services.
The hospice team will continue to provide care and coordinate the plan of care, including arranging transport for the patient to and from the facility as needed.
If you continue to need more assistance than what’s already provided by the hospice team and the Medicare benefit, you may need to explore an outside caregiving or personal care agency to provide support.
If you involve an agency in your respite care plan, they will provide either in-home or out-of-home services.
The Benefits of Respite Care
Some caregivers feel a sense of guilt for needing time for themselves. If you feel this way, it’s important to note that respite care provides both short-term and long-term benefits to you and your loved one. Asking for help does not mean you are abandoning a loved one or cannot be present at important moments, it just means you are giving yourself the ability to be more present in a more relaxed state.
1. Prevent Caregiver Burnout
The most important benefit of respite care is the prevention of caregiver burnout. In addition to caregiving duties, you likely have a life full of responsibility. Respite care is appropriate when:
- You are overwhelmed and need a break from caregiving
- You need to address another urgent responsibility
- When a caregiver is sick or needs to have a medical procedure
- You have a trip planned or other important life event to attend
Respite care can help reduce stress and support long-term care commitment. Taking care of yourself now will pay off in the long run.
2. Take Time to Rest and Recharge
Life can feel consumed by caregiving responsibilities. By taking time for yourself, you can focus on the self-care activities that address your emotional health, such as hobbies, time spent with friends and family, exercise or relaxation.
3. Improve Quality of Care
Your care team wants what’s best for you and your loved one. During respite, you can still visit with your loved one and the care team will communicate with you to give updates, answer questions and provide support. The team will also work with you to plan for your loved one’s return home to make it as seamless as possible.
How to Choose Respite Care
- Are the respite needs ongoing? Remember, Medicare covers five days and five nights of respite. If you need regular support extending beyond that time frame, an informal network of family caregivers, friends and volunteers working together to cover care can offer breaks.
- Do you only need a few hours of help or intermittent help? This is another case where other family members, friends or hospice volunteers can fill in.
- Outside of Medicare reimbursement, is there financial ability to pay for private caregiving?
- Is the patient already receiving 24/7 skilled nursing care? If so, respite may not be appropriate.
- Is the patient experiencing pain or other sudden symptoms that can’t be managed at home? If so, the general inpatient level of hospice care may be appropriate, rather than respite care. 3
What is the Cost of Respite Care?
If respite care is part of a loved one’s hospice care plan, Medicare Part A covers costs. According to the Medicare website, eligibility for hospice care includes:
- Certification of a terminal illness from a physician.
- Hospice care in place of curative care.
- A signed statement selecting hospice care rather than a Medicare-covered treatment.
Keep in mind that Medicare insurance only covers respite care that takes place in a Medicare or Medicaid-approved inpatient facility lasting up to five days/five nights at a time.
Is Hospice the Answer for Your Loved One?
Wherever you are in your journey of discovering whether it’s time to begin the conversation on hospice with your family, Amedisys is here to help with these tools:
If you’re ready to speak to a hospice specialist, please complete the form at the bottom of this page or visit our location directory to find a care center near you.
Deb Gallaher, MBA, MSN, RN, NE-BC, CHPN, is a Senior Hospice Clinical Education Specialist for Amedisys. She has 10 years of experience in hospice and is passionate about sharing her insights on high-quality care.
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