A Much Needed Break
Hospice comfort care volunteers are available to perform various support activities. One of the most valuable and critical services volunteers provide is a respite for the family caregivers. Care for the dying requires physical and emotional stamina, and many times family members burn out because they don't get a break. They need this time to recharge and process their feelings during this emotionally draining and physically tasking time. I see the value of this in the eyes and relaxed stances of family caregivers, who I spell regularly.
Home hospice is not a full-time care service. Most of the caretaking duties for the patient fall to family members and other loved ones. Caring for a terminally ill loved one is hugely taxing emotionally and physically. Stress and exhaustion are inevitable, and burnout is a real possibility. As a result, one of the most essential services that Hospice Volunteers can offer a patient's family is respite. These services entail a volunteer spending time with the patient so the family caregivers can do something else, preferably an activity that helps them decompress.
“To care for those who once cared for us is one of the highest honors.”
While providing respite for the family caregivers, the volunteer can still support the patient in the many ways volunteers do. These include listening, helping with patient death work, being a quiet presence, entertaining such as reading to the patient, and many other activities.
The caregivers who are being spelled can do whatever they want. They might take a nap or go shopping. They might go to pick up drug prescriptions for the patient. They might medical appointments of their own. I had a patient whose wife went to several urgently needed dental appointments while I spent time with her husband. I always like to see caregivers going out for a meal with friends, a movie, or some other entertaining activity. Spending time with supportive friends and understanding can be a supercharging activity. As, I said above, caring for an ill loved one, 24 hours a day, takes a lot out of a person. The best respite is the opportunity to get away from the stress of caregiving and do something fun and relaxing.
I had a patient whose spouse would often be completely harried and stressed when I arrived in the morning. When I would ask her how things were going as I stepped over the threshold, she often launched into a litany of stressors.
"I've been up since 5 this morning cleaning the sheets, David threw up all over, and I've got the nurse coming later in the afternoon and I have so many questions for him. And just an hour ago David was absolutely screaming in pain. I got permission to give him a double dose of pain medicine. And he is finally sleeping. But does that mean I have to give him that much always? I don't think my brain is working right, I turned on the coffee pot without coffee this morning …."
Daisy was wringing her hands as she recounted everything she had to handle over the past several hours. She shook her head and said, "I think I should cancel my lunch with my girlfriends. David needs me."
I have to interject, "No. I think you should go. You need a break. I am here and I can take care of David. I can call the Hospice nurses if I need help. And I will call you if there is any emergency. For now I want you to go out and enjoy yourself. You deserve a break."
"I suppose you're right…but what if …"
"No buts, no ifs. I got all of those covered for you. David and I are going to have a great time. We have the soccer match to watch."
I eventually convinced Daisy to go out to lunch with her friends for a couple hours. When she returned, she was smiling, relaxed, and lovingly attentive to her husband. Her shoulders were relaxed, and she was no longer wringing her hands. The transformation was so complete that I saw her as a different person. Those two hours of enjoying herself and being with supportive friends were deeply healing for her.
“Each person deserves a day away in which no problems are confronted, no solutions searched for.”
I see similar results all the time with family caregivers. Even an hour's break every few days can do wonders for a caregiver. It can be the difference between burnout and the ability to continue to rise to challenges associated with care for a dying loved one. These mental health breaks also benefit the patient in the form of a rested and emotionally stable primary caregiver.
Again and again, I see the caregivers benefiting from even an occasional respite. Sometimes there are work, community, or family events that caregivers would not be able to attend were it not for Hospice respite services. Our service had a bedridden patient whose granddaughter was having her Bat Mitzvah. We were able to send a volunteer so that both parents and the grandmother could attend the entire ceremony and festivities. The family was incredibly grateful. The patient was spared the guilt and worry that he was negatively impacting his son and daughter-in-law's lives. His adult children could take care of their father and father-in-law while continuing to participate in their daughter's important milestones.
The availability of respite services also ensures that one of the most critical tenants of Hospice is respected: that no patient dies alone. There will always be some human presence in that sacred transition space for the patient.
The other tenant that is maintained is that patients will be made as comfortable and pain-free as possible. A volunteer can call a nurse for an immediate response and visit if discomfort levels spike. This critical requirement is also met as long as there is always someone with the patient.
The respite services reside at the core of Hospice philosophy. As simple as it sounds, sitting with a patient while caregivers get a break, it truly is at the heart of what Hospice stands for. Simply being there for the caregivers and patients does more than afford convenience. Respite services are critical to the normalization of death and dying. Just as with newborn babies, there are people to help so the family can maintain many everyday activities. In a way, respite services say that death is a normal part of life and life continues alongside death and dying, just as it does alongside birth and raising of children.
“There are only four kinds of people in the world. Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.”
As I have said many times before in this blog, we all have two incontrovertible things in common: we are born, and we die. Birth is wholly normalized within our global society. We prepare parents for the birth of a new child. We celebrate the birth and continue to support the parent caregiver of the child, during the intensive infant and toddler years. The same should be the case with death. We should acknowledge and celebrate the end of life, and family and friends should support the dying person and their family. Just as birth is something we talk about freely, so should the case be with death.
Support for the dying and their family is critical for a good death and for healthy bereavement. The simplicity of Hospice respite services shows how anyone can help family caregivers and normalize something that we all must deal with in multiple capacities throughout our lives. It is a simple yet powerful thing to give another person a break, time to recharge during difficult life circumstances, to allow them to recover their physical and emotional strength. Maintaining caregivers' mental and physical health is essential to ensuring that sick and dying patients have the best possible care. Most of us will be caregivers at some point in our lives. It is, perhaps, the second most universal inevitability besides birth and death. The role of the caregiver is arguably the most important responsibility in our society.
