Hospice Care: The last phase of life

My sophomore year of high school I took care of a 96-year-old woman named Clara. She was mobile and always found a reason to smile, despite all the pain and discomfort she was in. For more than three years I sat, comforted and supported my first patient until she took her final breath.

I watched Clara go from walking around her living room and putting together puzzles to being bedridden and unable to perform basic functions.

I’m a hospice caregiver. I comfort and support individuals during the final stages of their lives. People always ask, “Isn’t it scary working in a field where people literally die in front of you?”

Hospice care in my own words may be defined as a structure of care that supports an individual who is enduring an irreversible illness by catering to all their mental, physical and emotional necessities.

When people reach the final days of their lives due to terminal illness, they want to

consider how to spend them — and

with whom.

Hospice care offers people the ability to spend their remaining time within the comfort of their own homes, typically surrounded by loved ones or in the company of a caregiver like me who will support and nurture the dying just as a loved one would. This is the reality of hospice care.

We either watch patients like Clara decline, or we walk into a home where the patient has already declined and we comfort them for the rest of their lives.

She was the first person I ever saw take a last breath. When I witnessed Clara die, I finally understood why people ask me about the experience.

I held a nebulizer which gives out oxygen to Clara’s nose but she pushed it away. She was ready to pass on, and soon enough, later that evening she was gone. It was scary, and it’s never gotten easier as the years go by.

For patient after patient, death is death

— plain and simple. 

Shortly after Clara died, comedian Dana Carvey’s father, Bud Carvey, became my next patient. Although I only knew Bud for a short period of time, caring for him was joyful. We sat and read together, and like Clara, Bud always found a reason to smile. His passing was hard on me because he reminded me of what my relationships may have been like with my own grandfathers if I’d had the opportunity to meet them.

Bud had dementia, and although he wasn’t always mentally present, he impacted me greatly in all the stories and memories he shared with me. I had never met someone so willing to disclose so many personal moments from his lives so quickly after meeting. It felt like he was there one day and

gone the next.

I had been warned the work was consuming both physically and mentally, and after Bud and Clara died, I agreed and took a break from caregiving.

I found myself overwhelmed and asked myself questions like, “I’m 18 years old now. Shouldn’t I be spending more of my time in the present with teenagers my age, rather than with those who walk into my life for a short period of time

and then die?”

So I did, for a while at least. Until I was offered another job — caregiving for a 97-year-old woman named Eva. I spent two and half years with her — more time in her home than my own it seemed — and learned from her the lessons of patience and empathy. Over time Eva lost her ability to speak clearly. She was constantly frustrated with this change and so eventually it was a matter of my interpreting her needs and receiving her denial or approval.

That is a skill I soon learned would apply to almost every job I had in the future. Hospice care requires you to constantly adapt and learn new people skills. More often than not, as a caretaker you must interpret or guess what your patient needs based on the fact that they will either never ask for help or they no longer have the ability to do so.

Though surrounded by neighbors and friends who loved her dearly, Eva had already lost all of her family members. She treated me like her family, and I treated her the same. The first day I introduced myself, she pointed to a beautiful painting of a sunset on the wall and said, “Do you see that painting there? I want you to have it when I

pass away.”

In that moment I remembered the impact of my job and my presence in these individuals’ lives. Caregivers like me are often among the last people they spend their final days with, and, like with Eva, I noticed they often seem inclined to show gratitude and offer kindness.

So yes, it is scary to be in the presence of death, and hospice caretaking is not an easy field to work in. The patients are mostly loving and gracious; but, as expected, they are also in pain, and

they are tired.

They have bad days, too. I’ve learned to love and care for them unconditionally, and I’ve learned the importance of making every day count. I’ve also learned death is not the worst thing one can witness — it is more difficult to witness suffering and grief.

That’s why I chose hospice care.

Through their grief and pain, I can be a loving and joyful light in these individuals’ lives until the moment that they pass.

Eva’s painting now hangs on my wall, and it is a symbolic reminder to me of how the patients I have lovingly served will always be with me in some way.