Two months after I had started working as a hospice chaplain, I was diagnosed with Hodgkin’s Lymphoma in the summer of 2011. As I drove around the southern Maine area visiting hospice patients who were diagnosed with having six months or less to live, I was struggling with facing my own death, depending on the progression of the cancer.
As I underwent treatment involving nauseating chemotherapy and exhausting radiation, I was able to understand on a deeper emotional and physical level what many of my patients experienced as they reflected on illness, life and impending death. What would people remember about me and did my life make a difference? Will the death be painful and how long will it take? Will my father and son be all right as they grieve and go on with their lives? What will heaven be like?
Fortunately, these questions still remain unanswered as my cancer treatment was successful. I remain cancer-free, having recently passed the five-year milestone. However, this brush with death helped me to understand more intimately what many of my hospice patients go through — and what they need on their final journey of life.
“Hospice helps bring comfort to all three aspects of a person’s life — mind, body and spirit,” says Nicole Garrity, a social worker for Compassus in Scarborough, Maine. “There is attention to relieving symptoms of physical pain while helping a person with their fears, anxieties and possible insecurities about what is next.”
Helping the patient through the process is a team made up of nurses, social workers and chaplains who work together in a holistic approach because mind, body and spirit are all related. For example, grief may cause someone to have trouble sleeping, which in turn can make cause mental confusion. Or the person may be in a spiritual crisis, which may lead them not to eat well, which takes its toll on a person physically and emotionally.
A person can also experience fear about pain, which can make the pain worse and cause anxiety. However, once the person is reassured that with today’s medicines, he or she should not feel pain, the fear diminishes, which positively affects mental health.
“People are most fearful about the death process itself and fear it may be painful,” Nicole says. “They are also afraid that they have not made ‘their mark’ on this world. Reminiscing and reviewing the legacy of their life is an important part of getting ready for death and dying with peace.”
Hospice isn’t only about death; it is about a quality of life, no matter how many or few days one has remaining.
“A terminal diagnosis does not mean that opportunities for growth, togetherness and reasons to laugh and smile need end. It may be more important now than ever to gather with loved ones and make positive, happy memories so this time is not all about sadness, doom and gloom,” Nicole says.
Compassus provides opportunities for patients to enjoy life with special events, such as making it possible for a person to go to the symphony, a ball game, celebrating a birthday or anniversary with a special meal or enjoying a visit by an Elvis impersonator.
“People may have a lessened sense of sadness if they can look back at the final days of their loved one’s life and know that the time was not ‘wasted.’ Participation in these special events serves to create memories for the dying and their loved ones,” Nicole says.
To help loved ones after the terminally ill person has passed, grief groups, workshops and memorial services, where family and friends can share feelings and talk about the pain, serve as a way to heal and to keep on living.
“If grief is kept quiet and private, it can be very isolating. This can intensify the feelings of grief and make the situation worse,” Nicole says. “By addressing the emotions and talking about it with others, they know they are not alone and can have a safe place to vent their feelings, which will help them move on.”
Everyone deals with grief in a unique way, depending on the person, circumstance, belief system and coping skills. What works for one person may not work for another. Grief takes time. In today’s fast-paced society, there is often little patience for a process that may take months or years. The bereaved often state they feel rushed to “get better” or “get over it” by some who lose patience with them. Sharing these feelings helps.
As a cancer survivor as well as someone who has experienced the loss of loved ones — including my mother to Alzheimer’s in 1998 — I have a deeper understanding of what many of my patients may be feeling, physically, spiritually and emotionally. Fear comes from uncertainty.
One of my favorite sayings is, “Don’t waste your pain.” As caregivers who have gone through serious illnesses, we can use our experience to help our patients. In my own experience counseling patients with a terminal diagnosis of cancer, I’ve found they are much more willing to open up emotionally when they find out that I am a cancer survivor. Our pain can be a uniting force for grief work and healing.
Death is something that touches everyone’s life — no one can escape it and it is what makes us all human. Though we can do nothing to prevent death, we can provide care and comfort to the terminally ill by being there for them until they take that last breath. They cannot avoid the journey but they do not have to do it alone.
Our compassion continues as we support those friends and family members who are left behind to continue living a life that is void of the deceased loved one, but is still worth living. By working in hospice, we as caregivers are all answering the call to compassion.