What is respite care and how does it help family caregivers who care for terminally-ill loved ones?

What is Hospice Respite Care?

Published March 21st, 2017

When a loved one is diagnosed with a terminal illness, it is often a close family member who assumes the role of caregiver — a role over 40 million Americans fulfill. Caregivers, from a heart of compassion, tend to the majority of their loved one’s needs.

"Hospice respite care allows caregivers to get the rest they need." Tweet

Be it assisting their loved one with mealtimes, remembering medications, or providing transportation to doctor’s appointments, the responsibilities of caregiving exact a large physical, emotional, mental, and spiritual toll. Over time, the work of providing care for a loved one can begin to wear down even the most resilient of spirits.

What is Hospice Respite Care?

Understanding the demand placed upon caregivers, hospice provides caregivers with a service known as “respite care.”

Under respite care, a terminally-ill loved one can be temporarily checked in to a professional care facility, such as a hospital, hospice inpatient care facility, or nursing home. This allows the caregiver to get some much needed rest and time away from the rigorous demands of daily caregiving.

Caregiver Burnout and the Purpose of Respite Care

Though caregiving is an act of loving service to another, it is work and a continuous expenditure of time, effort, and energy. In addition, most caregivers have additional responsibilities that they must fulfill alongside their caregiving duties, such as caring for their own families, or working a full-time or part-time job.

Sadly, as a combination of caregivers’ continuous output and a lack of attention to their own needs, caregiver burnout is an all too common occurrence. During burnout, caregivers can experience:

  • Depression

    Depression in caregivers manifests over time, often as a result of the continuous stress and demands of caregiving. Left unchecked, these depressive thoughts and feelings can manifest into a caregiver’s desire to hurt herself or her terminally-ill loved one.

    If you are a caregiver experiencing the desire to self-harm, please contact the National Suicide Prevention hotline immediately. Highly-trained and compassionate experts are available 24/7 to ensure you can find the comfort and help that you need.

  • Recurring and frequent sickness

    As the mind, body, and spirit wear down under stress and the continuous output of effort, caregivers’ immune systems can decline, leading to frequent bouts of illness.

  • Inability to sleep

    Caregivers are always thinking of the well-being of their loved one — mental checklists of medications taken, doctor's appointments, meals, transportation arrangements, and the general demands of caregiving make getting truly restful sleep difficult.

  • Changes to appetite

    Sudden shifts in diet often manifest during caregiver burnout. Some may eat to help cope with stress and difficult emotions, while others may lose their appetite altogether.

Should caregivers find themselves experiencing any of these symptoms, exploring the hospice respite care option is time wisely spent — ensuring the health and well-being of the caregiver is paramount to both the caregiver and the care of their loved one.

The Benefits of Hospice Respite Care for Caregivers

For many caregivers, exercising the respite care option may feel as if they are claiming weakness or demonstrating an inability to provide adequate care for their loved one.

Quite to the contrary, a caregiver who uses respite care is one who understands that one’s personal health affects one’s ability to provide quality care for another.

The purpose of respite care is to ensure that caregivers, with the stress and level of daily effort that their role demands, are given time to rest and recuperate in order to avoid burnout.

Physical benefits of respite care for caregivers

By knowing their loved one is under the compassionate and attentive care of medical professionals, caregivers can begin to attend to their own physical needs.

  • Improved sleep patterns

    With the peace of mind gained from respite care, caregivers are able to get their sleep schedules back on track for more restorative sleep.

  • Increased energy and improved self-care outlook

    By having a break from their care responsibilities, caregivers are empowered with the time to begin investing in themselves and their own personal care.

    While it may seem selfish at first blush, proper self-care — through proper sleep, diet, and exercise — is paramount to providing the highest level of care for a terminally-ill loved one.

    During the respite period, caregivers can begin taking positive steps toward a more balanced schedule and lifestyle, yielding positive benefits for both themselves and their loved ones.

Mental, emotional, and spiritual benefits of respite care for caregivers

Caregiving takes its toll not only physically, but mentally, emotionally, and spiritually as well. By exercising the hospice respite care option, caregivers allow themselves to the time to heal and reinvest in their personal wellness.

  • Improved outlook on care situation and the caregiving journey

    When given the time to rest mentally and physically during respite care, caregivers often report a greater sense of well-being and an improved outlook on the overall care situation.

    In addition, the rest afforded by respite care is often reported as a contributing factor in a caregiver’s ability to adapt to difficult care emergencies or sudden life changes as a result of caring for a terminally-ill loved one.

  • Improved relationships with family and friends

    The stress and constant demand of caregiving often puts a strain on relationships with family and friends. Feeling as if family members aren’t helping enough, that friends aren’t being supportive, or that others are overstepping their bounds and “helping” a little too much are all common feelings that can arise.

    Through respite care, caregivers can have the time to talk with family and friends and begin mending relationships, setting boundaries, and helping others understand in what capacity help is needed most.

  • Reduced levels of stress and anxiety

    With trained healthcare professionals providing their terminally-ill loved ones with attentive care, caregivers often report an improved peace of mind and overall lower levels of stress and anxiety.

The Benefits of Hospice Respite Care for Patients

While providing caregivers with a time of rest and recuperation is key, patients also benefit from periods of hospice respite care. While checked in to the inpatient facility, patients are provided with compassionate care that maximizes comfort according to their specific care wishes.

Physical benefits of respite care for patients

Patients often show signs of various physical improvements during their respite care period.

  • Improved sense of overall physical well-being and improved physical functioning

    Many patients, particularly those who identify as living with highly-stressed caregivers, report greater levels of overall physical well-being and often show signs of improvement in carrying out tasks such as toileting, eating, dressing, and other activities of daily living.

Psychosocial and emotional benefits of respite care for patients

In addition to the physical benefits that respite care can yield, patients often report an improvement in their overall psychosocial and emotional well-being after an inpatient respite care stay.

  • Reduced care recipient guilt, stress, and anxiety

    Terminally-ill patients often report feeling guilty about the care they require and can often feel as if their continued living has become a burden to the loved ones that care for them.

    By receiving care from an expert care team, and knowing that their caregiver is getting quality time to relax and enjoy downtime from caregiving responsibilities, patients report feeling reduced levels of guilt, stress, and anxiety surrounding their terminal illness and move toward an understanding that they are more than their illness and that they are never regarded as a burdensome weight.

  • Improvement in social interactivity skills

    When in respite care, patients are checked into an inpatient care facility, allowing them time away from their normal day-to-day surroundings. By regularly interacting with compassionate, friendly people who are dedicated to their care and by being exposed to welcoming and novel surroundings, patients often show an improvement in social interactivity skills during their time in respite care.

  • Reduced emotional and relational friction with the family caregiver

    Respite care allows both the patient and their caregiver some time apart and time to relax and reflect upon the end-of-life journey as a whole.

    At the end of the respite care session, many patients report feelings of greater emotional and relational connection with their caregiver, with both parties often citing an improved respect and appreciation for one another.

How Often Can Hospice Respite Care be Requested by a Caregiver?

A caregiver may only request respite care once — a single, 5-day session — each billing period. More frequent use of respite care may be permitted in special circumstances; however, these often require that supporting documentation be submitted to ensure that the request for an additional respite care session is valid.

If a caregiver is frequently requesting respite care, the hospice care team may recommend that a patient be moved from their current home, or caregiver’s home, and placed into a care facility that is more readily equipped to maintain the level of care that a patient may require.

This suggestion to change care locations, however, will never supercede what the patient desires for his or her care. Should the patient desire to remain wherever they call home, the patient’s end-of-life care preferences are always held in the highest regard and honored by the hospice care team.

Where is Hospice Respite Care Provided?

Respite can can only be provided at a Medicare-certified inpatient hospice facility, or a Medicare-certified hospital or skilled nursing facility that has the capacity and ability to provide around-the-clock nursing care should a hospice patient’s plan of care require 24-hour care.

Respite care may only be provided in a Medicare-designated inpatient facility. This means that respite care cannot be provided a patient’s home, nor at assisted living facilities or residential care facilities, as they are regulated at the state level and do not meet CMS’s federal requirements of being a Medicare or Medicaid-certified hospital, inpatient hospice facility, or nursing facility.

Paying for Hospice Respite Care

Respite care, as a service of hospice, is largely covered by the Medicare hospice benefit; however, you may be responsible for 5% of the Medicare-approved amount for inpatient respite care.

To ensure full understanding of any costs that may be associated with a loved one’s respite care stay, contact the hospice organization’s billing coordinator.

Caring for Yourself to Care for Your Loved One

It is common and understandable to feel guilty about even considering respite care. At first blush, you may feel as if you’re admitting defeat or admitting to the world that you’re not up to the task of taking care of your terminally-ill loved one.

Nothing could be further from the truth. The respite care option exists because being a family caregiver is an incredibly demanding experience. Every facet of your being — your mental well-being, your physical person, your relationships, and your spirit — is involved in providing the loving, compassionate care that you provide for your loved one.

Caregiving isn’t easy, and respite care isn’t admitting defeat. Exercising the respite care option demonstrates a true desire to provide the utmost care for a terminally-ill loved one because you’re aware that your ability to provide for another is intimately linked to how much energy you have to give — and that energy cannot be expended if you’re physically, mentally, emotionally, and spiritually exhausted.

The hospice respite care option communicates strength, compassion, and above all, a desire to provide the very best care for your loved one on the end-of-life journey.

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References

  1. Neville, Christine C., RN, RPN, PhD, and Gerard J. A. Byrne, BSc MBBS PhD. "The impact of residential respite care on the behavior of older people ." University of Southern Queensland, 5 May 2005. Web. 1 Feb. 2017.
  2. Jeon, Yun-Hee, BHSc MN PhD RN, Henry Brodaty, AO MBBS MD FRACP FRANZCP, and Jon Chesterton, BAppSc DipCPN RN MHN FANZCMHN MRCNA. "Respite care for caregivers and people with severe mental illness: literature review." Journal of Advanced Nursing, 16 Jan. 2004. Web. 1 Feb. 2017.
  3. "Medicare Benefit Policy Manual." Centers for Medicare and Medicaid Services, 08 May 2015. Web. 1 Feb. 2017.

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