“Where are you? I need you; pack a bag.” This was the last phone call I got from my sister. I packed my bag and headed to her home two hours away.
My sister had been battling pancreatic cancer for the last 18 months. My other sisters and I had been taking turns accompanying her to her chemo treatments. She loved having us with her, spending time, being there for her. It was an unspoken promise between us that I would be there when she was dying.
I have been a home health/hospice nurse for close to 30 years. I have worked for the last almost 15 years here at Hospice of the Panhandle. My brother-in-law and my niece and nephews appreciated that “I knew what I was doing.” They had never been caregivers. My sister was a nurse, as well, and was always the caregiver of their family. It gave them peace of mind to have my expertise there.
As a hospice nurse, I have always known that being the caregiver for your terminally ill loved one was very challenging and heartbreaking. I’ve seen so many courageous people taking care of the people they love as they live their last days here on earth. I have witnessed the exhaustion, the fear of doing the wrong thing, the helplessness and the overriding grief. I have been amazed as I watched people persevere through those difficulties simply because of the love they had for that person.
We were fortunate; not only was I there, but my sister’s husband, children and my other sister were all there that last week of my sister’s life. Many families, because of work and life’s complications, often only have one person to step into that caregiver role.
Still, it was exhausting and heart-wrenching, and I began to doubt everything I knew about end-of-life care. We had some challenges getting my sister comfortable and keeping her comfortable. I was so grateful that we had hospice services. The nurse came every day and provided assurance we were doing the right things. The hospice nurse in me knew that we were, but the sister in me struggled hard. The hospice nurse for my sister was also able to intervene when we needed changes in medications. It was comforting to have that calm presence bring reassurance and help.
We lived in a bubble that last week of my sister’s life. Our lives focused solely on her, her comfort, her needs. We took turns eating and sleeping. We rotated who was sitting with her, talking to her, hoping she could still hear us, and praying.
My sister was only bedbound and unable to care for herself for about a week. As a hospice nurse, I see so many people who are unable to care for themselves for weeks and months. I have observed caregivers who have put themselves in second place so they can provide their loved ones with the care they need for weeks and months. I know they are making many sacrifices to be there for the person they love.
My sister was able to pass from this world peacefully with her family surrounding her. In the three years since she died, I have looked at the people taking care of our hospice patients with a new understanding. I know firsthand now, the sacrifices, the difficulties, the fears and the profound love that each caregiver experiences. I have a deeper insight to how overwhelmed and helpless a caregiver can feel. I know how the lack of sleep, the isolation, the fear, and the grief can make you question everything you know.
But most of all, I deeply respect and honor the people who are able to step up and say, “I’ll be there for you. I will take care of you.”
Johnna Shreve is the nurse manager for Hospice of the Panhandle’s Cacapon team in Romney. She has been a nurse for 30 years, and has worked for Hospice for almost 15 of those years.