The Not So Odd Choice to Be a Hospice Comfort Caregiver Volunteer
People are often befuddled by my decision to volunteer for Hospice as a Comfort Caregiver. I've spoken to other Hospice volunteers, and many have encountered people who can't imagine why someone would want to spend time with people who are dying. Many Hospice volunteers have heard statements like, "That must be so depressing," "But you don't know those people," or "They are going to die, there's nothing left to do," and my personal favorite," You know, you can't save them." As harsh as these statements sound, they have been thought and said out loud on numerous occasions. And more often than not, the people making these statements are not doing so to be cruel.
As volunteers, who love what we do, we are bewildered. The reasons we do this work are not very different from why others choose different volunteer roles. We do it because there is a need to be filled, and we find it rewarding. It is simple as that. Perhaps it is more important to consider why it is so hard for some people to wrap their heads around this work.
“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”
I think a big part of the befuddlement is that, as a society, we are pretty out of touch with death. We outsource the rites of death, burial, funeral, and body preparation to strangers who work at this for money. Death and dying are often only spoken of briefly and in hushed tones. We will do anything to avoid talking about or thinking about death. Only when it is entirely unavoidable, such as with the loss of a friend or loved one, do we peek behind the curtain. We do this quietly and quickly close the drapes as soon as possible. The result is that the bereaved, the dying, and those who love them often feel alone and shrouded in misunderstanding and avoidance.
When my brother died, he was shy of his 40th birthday, and I was almost 41. None of my age peers had any experience with loss. The best responses I got were often sympathy cards with platitudes that were offensive to me at the time. The worst reaction was from the people who just stopped all communication. I lost friends at a time when I needed support. One friend conveniently "forgot" about what happened, and every time I saw him, he repeatedly acted as though it was news that I had lost my brother. This hurt and I didn't understand what was happening until I returned to my volunteer job.
At the time, I was volunteering with the Palo Alto Auxiliary. This group was mostly women in their mid-sixties and above. These fellow volunteers were super supportive, said all the right things, and knew when to be silent without looking uncomfortable. When I lamented the awkward situation with my peer friends, one lady, Audrey, took note. She explained, "Michael, look at all of us, how old we are. We have all experienced loss by now in our lives. You are part of a club that most people don't join till they are in their fifties. Your peers don't have any experience with death, especially of a close family member. So, please don't feel like they are horrible people. I know what you are going through because I lost my sister in my thirties. I felt so abandoned by people who I thought were friends. It took me years to realize why."
Audrey's personal story of loss was eye-opening for me. And I am still grateful to those older volunteers who helped me through a difficult time by leveraging their own experiences of loss.
There are two things that we all experience, both personally and vicariously. We are all born, and we all will die. We all hear about the births and deaths of others throughout our lifetimes. There are abundant support services and communities built around having a baby. Everyone joins in supporting parents-to-be through pregnancy and birth. There are baby showers and gift registries, and Lamaze classes. But more importantly, people want to be there to help the parents and to celebrate. We are celebrating a momentous life event, something that happened once for each of us, birth.
Leading up to death, when we know it is coming, there is little spontaneous support. During this transition and after, people are unsure how to behave. We often have very narrow views on how death should affect us. The wife of a former patient told me that one of the most challenging things she had to deal with while her husband was dying was the constant expectation that she should be somber and weepy at all times. When she tried to make light of how her husband was sleeping late for the first time since she had known him, her friends thought she was cold-hearted and uncaring. She turned to Hospice for our respite services (we sit with the patient while the family member does errands or takes a much-needed break.) She told me that friends and even some family balked at sitting with her husband, "The greatest fear they had was that Ken would die while they were there, alone with him. They were sure that they wouldn't know what to do. When I told them all they had to do was hold his hand, they were even less inclined to help."
It is partially because of situations like this that Hospice comfort and respite care exist. Because loved ones and the dying need this type of support. People should have help during the dying process and the bereavement period. And that is what we do as hospice volunteers. We provide comfort and respite for the dying and their loved ones during the dying process. After the death of a Hospice patient, there is free bereavement support to help those left behind to process their inevitable grief. I view this and the comfort care before death to be the greatest gifts of Hospice.
At the heart of it, I volunteer for Hospice, like many other people, because it is a good fit for me. It is a good fit because of my unique life experiences and capabilities. I volunteer because I find it rewarding to be supportive of people at the end of their lives. In other words, the same answer a person might give for consistently volunteering at a homeless shelter or a food bank; is because it fits. I think the greater surprise and harsher statements result from our society's fear of and discomfort with death. I also like Hospice for what it provides our society and its overarching philosophy. It is a world-changing organization that fills a great need in society today.
“A candle loses nothing of its light when lighting another.”
In closing, it is essential to note that Hospice has voluntarism built into the organization. 5% of all hospice organization hours must be volunteer hours. The founder of Hospice, Dame Cicely Mary Strode Saunders, believed that if every person in society donated 5% of their time to worthy causes, we would have a much healthier and happier society. That is hard to argue against, given that our current "every man for himself" approach does not appear to work out so well.
I hope this helps both Hospice volunteers and the people who question why.
Also, I encourage everyone reading this - if you are not already doing so - to find a cause to which you can donate at least 5% of your time. This fraction, just one-twentieth (1/20) of your time, can make a substantial societal difference as more people commit to participating. For most people, this amounts to a couple of hours a week. And the great thing is that it can be anything you find rewarding.
