Let love take over: Lessons from hospice

I recently came across a post on Facebook from an old family friend that brought tears to my eyes. Christopher (pictured below) is a hospice volunteer. He agreed to talk a bit about work I find both fascinating and inspiring. He also shares that wonderful story I mentioned, below.

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Caitlin: What drew you to volunteering with hospice?

Christopher: I have always had an interest and curiosity about the experience of death and what comes after death. I had several experiences as a teenager with death, one in particular in which I was the only person on the scene of a late night car accident and stayed with a passenger as he died. Those experiences had a deep impact that I never forgot about. In college I took a course on Death & Dying. Elizabeth Kubler-Ross’ ground breaking theories on the five stages of grief were relatively new at the time, as well as the academic study of death. Looking back, I am honored to have obtained that knowledge thirty years ago.

It wasn’t until three years ago that I began to think about doing some volunteer work. My children are grown now and after spending years involved in various sports and school related programs, that phase of life had ended.

I was working for Abington Hospital at the time and knew they had a Hospice facility. I felt drawn to it. I walked in one day and discovered that they had an immediate need for someone at the exact time of day that I was available to volunteer.

Caitlin: Wow, it sounds like it was meant to be. What’s a typical day like for you volunteering at hospice?

Christopher: I cook breakfast two morning each week. We have a 20 bed inpatient facility with a lovely small kitchen where volunteers make meals to order for the patients who are eating. We have patients who may only spend their last couple of days with us, but we also have some who spend several months. Many of them are quite self sufficient when they come in and still have hearty appetites. So I might be cooking something as simple as Cream of Wheat or Toast & Tea, or a more elaborate breakfast like an Omelette or fresh Blueberry Pancakes.

I can honestly say there is almost no such thing as a “typical” day.  I could show up one day and no one is eating, but the next time I might feel like an over-stressed cook at a busy diner. Either way, there is always an opportunity to connect with a patient or family member. Family members can spend the night in the rooms with patients, and quite often they will ask for breakfast as well. Preparing a meal, serving food, and perhaps feeding someone is one of the most elemental forms of caregiving. A very intimate experience.

Caitlin: What is the hardest part of volunteering at a hospice?

Christopher: The hardest thing to accept is the younger patients.  When a patient is in their 80’s or 90’s death can be accepted or expected for the most part. That person has lived a full life. We seem to have so many women in their 30’s and 40’s dying of breast or ovarian cancer. Women who have young children and husbands coming in to say goodbye. It is heartbreaking.  We also have a Pediatric wing. It is not common for children to enter inpatient hospice. Most remain in the hospital or spend their final days at home. But we do have children and teenagers from time to time. It is very difficult and tough on even the most seasoned nurses.  At the same time it can be a beautiful experience. We once had a 10 day old baby. Very unusual circumstances meant that the parents could only visit for a couple hours each week. The baby had a congenital heart defect and was slowly but painlessly dying. The nurses and volunteers made a pact that this child would never be out of the arms of someone. There was a continuous stream of loving people who took turns holding the baby and rocking her. She was with us for two weeks and no one will ever forget her.

Caitlin: That’s so beautiful. I’m curious for you, what is the most rewarding part of volunteering with the dying? What keeps you coming back?

Christopher: There is ALWAYS something to learn or receive from my time at hospice if I stay open and receptive. It may come from a patient, or family member, or often from watching experienced nurses. Even the most difficult patients or family members can be learning lessons.  There is a saying “We die as we lived.” This is so true. There are people who are so grateful and giving even while experiencing great suffering or pain. You just know that they lived like this their entire lives. There are people who are the exact opposite. Nothing can make them happy. I’ve learned to accept both types of people as teachers.

Caitlin: How do you keep yourself emotionally intact doing what could be very draining volunteer work?

Christopher: Honestly, the challenge is staying emotionally present. Resisting the temptation to close off.  It can be easy to view death as routine when you are around it so often.  Every patient and family member is facing a unique situation in their lives, and that is easy to forget when there is a constant cycle of families coming and going.

Before I experienced a hospice setting I guess I imagined it to be an incredibly and overwhelmingly sad environment. That isn’t true at all and it didn’t take long to figure out why. There is continuous grief, but at the same time there is continuous Love (Earthly and Heavenly).  I have often described this as the “Beautiful Sadness.”

I have also worked with ways to help staff and volunteers stay mindful and present.  Last year I took a course that was based on  “The Tibetan Book of Living and Dying” by Sogyal Rinpoche. (You can check out a video about the course here.)

Based on the course, I set up a meditation and mindfulness program and have presented it to fellow volunteers. I’ll be continuing the program this fall and we hope to expand it. The goal is to provide a pathway to enhance end of life caregiving skills by reducing fear, increasing compassion, and embracing the emotional roller coaster.

Caitlin: You shared a story on Facebook recently about comforting a family while their loved one was passing away. Can you share that story?

Christopher: Sure. An 80 year old man, dying of liver failure, was surrounded by his family. His wife of 58 years at his side, two daughters and three grand daughters stood around the bed as well. Tears were streaming down all faces. He shook my hand with the strongest grip I have ever felt from a hospice patient. The only words that came to my mind to say to him were, “You are surrounded by love. Nothing else matters right now.”

That family will stay in my heart and that is the greatest gift of hospice care, and why there is absolute truth in the old saying “You get way more than you give” as a hospice volunteer.

The more I think about this, and the words “Surrounded by love”… is the realization that he is not just surrounded by the three generations in the room. He is surrounded by an unending generational chain. All of his ancestors who have passed before him, and all of his descendants yet to be born. It is all part of the same LOVE, unbroken and inseparable. It is with us always.

Caitlin: I think that is so powerful. I am personally really uneasy about death, but those words really made sense to me and I think they’re so true. It certainly brings peace to me and I hope it will for my readers, as well. If I may bring up, I know you recently lost your mother. How has this volunteer work impacted that loss and perhaps helped you deal with it or understand it?

Christopher: I don’t think it lessened the pain or loss at all, but it certainly helped to understand the process of a prolonged terminal illness like she had. I was better equipped and capable of talking to her about death than I would have been without the experience of hospice work. Even more so, was the ability to help family members work through the pain.

Caitlin: What advice would you give other people as they care for family members who are in their final stage of life?

Christopher: Stay focused on the moment, enjoy the smallest and seemingly most insignificant moments. Be sure to take care of yourself as well as the person who is dying.  There is a tremendous amount of internal stress going on that people are often not even consciously aware of. Eat, sleep (or at least get rest), and take time for yourself on a regular basis. Without this you can not give your best to your loved one over the long run. Above all, put aside petty differences or difficulties with family members.  There is no time for this at all. Let love take over.

Caitlin: Let love take over. That’s really great advice for all situations, actually. Obviously, this kind of volunteer works seems like it could be very emotionally difficult. Is it hard for hospice to find volunteers?Why should someone consider volunteering with a hospice?

Christopher: It can be; both difficult to do and to find volunteers.  I think that the people who volunteer for hospice as well as the people who make a career of working with the dying will mostly tell you that it is a calling.  Maybe some people try it and then discover that it is too much to handle. There can be a lot of emotional burnout as well.  This can happen in any field though.  There are many ways to volunteer for hospice without having to be in direct contact with patients. We have a fantastic group of people who make quilts and crochet blankets for every patient.  (I have my mother’s quilt that was on her bed during hospice care)

We have people who are trained to do follow up grief counseling with family members. And we have people who volunteer time doing clerical work or fundraising. These are all vital components of the whole hospice network. I would say that if someone feels called to do this type of work, they should listen to the calling and contact a local hospice. They will always be welcome to come in and discuss the possibilities.

Thank you so much for sharing your story, Christopher. I think it takes a truly special person to do the work you’re doing and it makes me happy to know there are people like you caring for those in the last days of their lives.

If you’re interested in volunteering at Abington Hospice at Warminster (in Pennsylvania, where Christopher volunteers) you can call Volunteer Coordinator Nancy Leporace at 215-441-6831.

Image credit: Christopher

 

3 thoughts on “Let love take over: Lessons from hospice

  1. Wow what a powerful story. He is a very special person to do what he does. My Mom was in Abington hospice and it was made easier by all the angels who worked there.

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