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On Being a Hospice Volunteer and Now a Patient
By Carolyn Crank
I began my hospice journey almost 18 years ago when Dixie Beyer, FHN Hospice’s founder and first director, was the initial recruiter and trainer of the organization’s volunteers. As it happened, I was her first volunteer and I’ve always considered hospice volunteering to be a wonderful turning point in my life. I hope it will be the same for you
We are all part of one unit ─ the hospice interdisciplinary team ─ and we all strive for the same results: to provide patients and their caregivers with the best that we have to offer through training and experience. Volunteer training will be ongoing as you attend ‘in-services,’ and that’s important. But, perhaps more important is what you experience as you confront new and often challenging assignments. So let me share some advice, based on what I have learned.
Every time you enter a new patient’s home, think about what an honor it is for a burdened caregiver to entrust a volunteer to take their place, be it for a trip to the grocery store or lunch with friends. We volunteers are the “cavalry” that hospice sends off to provide respite for a person who can’t abdicate their responsibilities lightly.
I would characterize assignments as “significant” or “insignificant.” During the insignificant ─ or less demanding ─ assignments, the patient may sleep throughout your visit, and you will have the time to read a book or flip through a magazine. You’d like to feel vital, but the one who really needs you there is the caregiver. Then there will be more “significant” times when the patient is alert and wants the comfort and reassurance that you, indeed, are right there for them. These assignments require that you reach a little deeper inside yourself to present that aura of calm and a look that says, “I’m in no hurry; I’m just here for you.” In either situation, be assured that the caregiver appreciates that you, a stranger, is giving your time to better their day or evening – and allowing them to feel “normal again” if only for a brief time.
That said, being a volunteer doesn’t mean accepting every assignment. Not all assignments are a good fit.. There will also be times in your personal lives that require you to say “no,” and that too is to be expected.
Over time, you will also come across people who may say, “I think you looked after my father.” That’s a powerful way to be remembered.
As a hospice volunteer, I have walked through many doors -- but always from the outside to the inside. Now I find myself on the other side of the door, as a patient.
My mother lived a mostly healthy life until age 94, and I naturally assumed I’d at least match that if not surpass it. Imagine my surprise when, in early February of 2013, the little cough I had developed in October was diagnosed as stage 4 non-small cell lung cancer. It had returned after 10 years.
The first week of such a diagnosis is almost unbearable. Could it possibly be that I will be parting from my husband of almost 53 years, my children and grandchildren, even my sweet dog who won’t know where I’ve gone? It seemed that electric currents surged through my body every few minutes. A friend had given me a card on a little stand that simply said, “Courage is fear that has said its prayers.” I must have repeated that statement and the Lord’s Prayer 100 times during that first week.
I received my diagnosis while wintering in Florida, and there I received nine of 35 radiation treatments and one chemotherapy treatment (of a proposed four-month treatment plan). Neither treatment guaranteed a positive outcome; however, both resulted in a fast decline of my strength and the will to live.
After much thought, I opted to discontinue both treatments ─ and return home to Illinois, and to my hospice and the amazing people who make it what it is. I thought that I was coming home to die, I was that ill. My daughter and I arrived in Freeport at 5:30 p.m. on a Friday, and by the next morning I was officially enrolled in hospice. Everything has gotten better since then. With proper medication and unfailing support, I have just had a period of amazing quality of life.
Over my hospice career, I have watched many people pass from life to death over a matter of weeks and months. I feel blessed to have so often been on the sidelines, learning that death is not a monster lurking in a corner. It is the natural end of the birth process, sometimes coming sooner rather than later. Death can be so gentle you fail to notice that it has entered the room. In October I was doing an 11th hour visit, sitting just about three feet from the patient while her husband watched football in the living room. I was reading from my kindle, but looking up every few minutes to check the rise and fall of her blanket. On one such look-up, I was startled to see what I thought was an optical illusion ─ the blanket had ceased its gentle rise and fall. I looked again, and then put my ear to her mouth to listen for a sign of breath. There was nothing. But, I thought to myself, she was just here! So gently did she go.
Having a disease like mine is a blessing. My family and I have time to plan for end-of-life, a luxury denied to many people. My “ducks” are getting in orderly rows…. And, after years of Curves and Weight Watchers, I am now eating whatever I want, whenever I want – and as much as I want! I am managing my disease, it is not managing me! Some time ago I also wrote my eulogy; after all, who knows my life better than me!
Carolyn Crank was the very first volunteer of FHN Hospice, based in Freeport, IL. She continued to work in this valuable role for nearly 18 years, until a diagnosis of stage 4 lung cancer.
Today, FHN Hospice has 60-plus volunteers, and Carolyn would often address each new group during the final training class. “All of our volunteers had enormous respect for Carolyn, for her selfless giving and her patient mentoring,” says volunteer director, Sheryl Wolff.
She died peacefully on July 15,2013 under the loving care of FHN staff and surrounded by her family.
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