I get this question a lot, why hospice? Why volunteer to insert yourself into the lives of strangers when they are going through a gut-wrenching experience. The answer is simple, because I can. I realize it isn’t for everyone so those that can, should. You couldn’t pay me enough to work with little kids or Hedge Fund Managers. For some reason, I can lean into this end of life situation.
I should probably back up and explain a little bit about what hospice is for the uninitiated. Hospice is palliative care. Comfort measures for someone who is terminally ill. This includes pain medication, durable medical equipment, oxygen, things that will provide pain relief for the patient. Hospice is not curative care. When a person gets transferred to hospice they generally have a life expectancy of six months or less. Hospice care can take place in an institution or at home. It is covered by Medicare.
When I was in my late twenties my Aunt was dying and she made me the executrix of her estate. She didn’t have much so that sounds a lot loftier then the actual task. Basically, I was in charge of making sure her final wishes were realized and distributing what monies and valuables remained after she died. She selected me for the task because she knew I could handle it and her sister would be too emotional. Through that process I got to know my Aunt better and got a glimpse into what it’s like to know you’re time is limited.
My Aunt was a chaplain. I couldn’t of asked for a better teacher to demonstrate grace through her final months. We had very direct conversations about what she wanted, I could ask her anything. I remember a particular conversation when I asked specific medical questions. I was frustrated that more wasn’t being done medically to cure her. She was young, 59, and she had an acceptance that was mind boggling. She got breast cancer in her 40’s and had a mastectomy, chemo, the works. I remember celebrating her 5th year cancer free declaring herself cured. A decade later she had leg pain while on a trip to Greece. When she got it checked out she learned that the cancer had metastasized. The younger and healthier a person is, the more aggressive the cancer. She understood clearly that this was her death sentence.
It was an intense time. At one point she broke both of her legs while bathing. We hadn’t finalized her Last Will and Testament yet so I raced to the hospital to have her sign it before she went in for surgery. That was an odd position to be in. It felt awful to put “business” as a priority before surgery and yet I wanted to fulfill her wishes if she didn’t survive. Remarkably, she made it through the surgery and got to celebrate one last Christmas.
Through this process I became aware that sometimes the person that is dying doesn’t have anyone to talk to. Sure there are usually family members and friends around but sometimes they need a buffer friend. Someone they can talk to with no skin the game. Someone who won’t break down because they can’t bare the thought of their loved one dying. A friend at the end who will listen without judgement or a history of emotions that can complicate a conversation. I sincerely wanted to be that person.
I was 29 when my Aunt died and the seed for hospice work was firmly planted. I knew that I wanted to get involved at some point. The next decade was divided between a busy career, starting a family, moving and health scares. Finally when my youngest was in Preschool, I signed up to train to become a Hospice Volunteer. That was 10 years ago.
In 10 years I have probably visited with 100 or so hospice patients and their families. Each case varies with some overlapping commonalities. The hospice team is consistent regardless of the individual workers. Hospice nurses and home health aids are a special breed. They are on the front line of death every day and they face it with a humility and strength that amazes me.
As a volunteer, I get to select the cases that I am willing to take on, the paid help doesn’t have that luxury. Sometimes I get to fulfill that wish of being their confidante. Most of the time though, I just sit by reading a book at their bedside while they rest. This is also rewarding as it provides respite for their caregiver. Caregivers are stretched so thin, anything you can do to help them should be done without hesitation. I’ve met people that have cared for their spouse for a decade or longer prior to getting on hospice. That’s an incredible length of time to sacrifice yourself for someone else.
Sometimes you get a hard case, something that hits close to home and guts you. I had a patient about a year and a half ago that still haunts me. We were the same age, her birthday was one week before mine and she had a kid the same age as my son. I visited her for a couple of months. Once a week I would stop by, make her tea and give her a pedicure. We talked about everything and anything. If she asked me a question, I gave her an honest answer and she did the same. What can I say, it’s just not fair. Despite the pain, it’s rewarding work which is why I still do it.
Do you have questions about hospice? If you do, feel free to comment and I’ll respond. If it’s too personal, you can email me at – firstname.lastname@example.org – if you do email me, please comment that you did so I get back to you in a timely manner. If you currently have a loved one on hospice, my thoughts are with you. I hope you can have the conversations of your heart while your loved one is still here. That is the gift of hospice, the ability to realize that time is running out, so say those words while you can.