As gratifying as it can be to care for a loved one at the end of their life, caregiving can be a demanding and relentless job. The Hospice Foundation of America shares insight to help ease some of the burden and better equip you for the journey ahead.
Angela Novas, MSN, RN, CRNP, ACHPN
Chief Medical Officer, Hospice Foundation of America
Kenneth J. Doka, PhD, MDiv
Senior Vice President for Grief Programs, Hospice Foundation of America
Many people don’t understand the responsibilities that weigh on an at-home caregiver. What type of care does a caregiver typically provide when taking care of a loved one at home during end-of-life care? What type of impact does taking care of a dying loved one have on that caregiver’s life?
While caregiving is an incredibly difficult job, for many it is also a labor of love and highly rewarding. According to a recent study by AARP and the National Alliance for Caregiving, 1 in 5 Americans is an unpaid caregiver, and part of that caregiving population is caring for a spouse, partner, relative, or friend who is receiving hospice care at home.
With hospice care, family caregivers provide the majority of the day-to-day needs for the hospice patient. Often, it is a meaningful time in relationships; it gives family caregivers and a terminally-ill loved one time to reminisce and share memories, hopes, and regrets. Most families tell us that they wish they had enrolled in hospice care earlier in their loved one’s illness than they did because of the additional layer of support for the patient and family.
However, as gratifying as it is to care for a loved one, caregiving can be a demanding 24/7 job, and the lives of caregivers can be impacted financially, physically, socially, and emotionally. They may need to take time off or take a leave of absence if employed; they may need to relocate temporarily; they may feel isolated in the caregiving role; they may become physically and emotionally exhausted; they may be part of the so-called “sandwich generation,” taking care of both their own children and their elderly parent(s); they (and the person they are caring for) may also experience anticipatory grief during their caregiving experience as they observe the relentless decline of their loved one. In anticipatory grief, caregivers and the dying person are not only grieving the future death, but all the losses experienced in the course of the illness. Losses for the terminally ill person could be physical, relational, or cognitive, and these losses affect a family caregiver, too.
Not only do caregivers for hospice patients administer medication to help with pain and other symptoms, but they also provide meals, companionship, housekeeping, and activities of daily living (ADLs) like toileting and bathing assistance. Hospice team members, including a registered nurse and nurse’s aide, visit several times weekly to check on the patient’s condition and medication. An aide will help with bathing and other ADLs during their visits, but there is a misperception that at-home hospice provides around-the-clock care. In reality, this is rarely available. 24-hour care is generally only available if a patient’s pain or other symptoms cannot be managed at home. Hospice is always accessible by phone if caregivers have a question or need immediate assistance.
Caregivers can often feel overwhelmed with the physical and emotional toll of being a caregiver. What type of support should that caregiver seek out?
Many caregivers are already experienced caregivers by the time a patient becomes eligible for hospice care. They may have had months or years of caregiving practice as the person’s condition declined and they required assistance in driving to appointments, cooking meals, overseeing financial and medical conditions, and other aspects of their life. The caregivers may already be physically and emotionally exhausted when their loved one becomes eligible for hospice care. It’s very important that caregivers realize the toll caregiving can have and that they practice good self-care. Social workers, who are part of the hospice team, can be great resources for caregivers who need advice about self-care and other helpful resources that may be available in the community. A wonderful asset that all Medicare-certified hospices have is trained volunteers. Family caregivers can ask their hospice if a volunteer can provide occasional temporary help or respite for the caregiver.
We always recommend that caregivers identify their circle of support and call on other family members, friends, neighbors, or people in their social and faith networks to help out. They can assist by making a trip to the grocery store or pharmacy. They can give you a break by helping in the home. They can bring a meal to give you one less thing to do. It can be important to carefully assess what relatives and friends may be able to offer. Some people are great doers; they can be the person to make that trip or help in some way. Others may be good listeners, able to hear as you express the frustrations of caregiving, your fears and hopes, and your grief. Still others offer respite or diversion. These are people who may be unable to do or to listen. Their strength is that give you time off — time where you can relax. That is as important as caregiving is draining, so sometimes you need to be with people who can take your mind off your difficulties.
If you are reluctant to ask people for help, an alternative option may be to hire a nurse aide who can help with caregiving, but this will need to be paid out of pocket and is not inexpensive. While hospice care is covered by most insurance, including Medicare and Medicaid, a private duty nurse aide is not covered by most insurance, with the exception of some long-term care insurances.
Finally, the Medicare hospice benefit includes provision for periodic “respite” care where hospice at-home patients are eligible for short-term inpatient hospice care. Respite care can be used to allow the caregiver to take a trip, have an elective surgery, or do anything else they wish with their time off. Respite care can also be used in cases of caregiver “breakdown” or for emergencies such as prolonged loss of power in the home.
Many caregivers feel lost after the person for whom they have been caring dies. Suddenly, the role they have had for months or even years is no longer there. It’s important to recognize that self-care is just as important if this happens as well. Hospice provides 13 months of free bereavement support to family and friends following the death of a loved one. This can be a valuable service to take advantage of when caregiving ends. Joining the hospice’s bereavement support group to discuss your loss and hear what others have experienced can provide validation of your feelings and effective coping strategies.
It’s important for a patient to be comfortable and keep their dignity during end-of-life care. How can caregivers provide that for their loved one? Are there advance directives that patients can submit to ensure their wishes during hospice? When should patients decide and plan on these final wishes?
Hospice care’s philosophy is all about making the patient as comfortable as possible while maintaining dignity. Caregivers can support that by extending that compassion and respect. A living will, or even a conversation about a person’s end-of-life care wishes, is important and can help maintain dignity by being aware of and respecting their wishes for end-of-life care. For example, if a woman doesn’t want to be bathed by a male nurse’s aide, then the caregiver can act as their advocate and request a female aide for this purpose. If it’s more important to the hospice patient that they are alert than medicated by a drug that may reduce pain but cause drowsiness, that is their choice and something that the hospice will honor. A caregiver can help support and advocate for the patient’s wishes if those wishes were made known before their illness progressed to the point where they are unable to advocate for themselves. Early advanced care planning is a gift we leave for our future caregivers as it allows them to honor our wishes for end-of-life care without the burden of having to guess what those wishes might have been.
