My first meeting with Dad’s hospice nurse, Paul, was a disaster. I had flown across the country at Mom’s request specifically to meet him, but once here, I wanted nothing to do with him — or hospice. I wouldn’t even sit down in the chair to talk, but perched on the arm ready to flee.
It’s a difficult thing to admit that someone you love may be dying. I think that’s why resistance to hospice remains and maybe why it’s misunderstood. Certainly, I resisted it when my father’s illness took a life-threatening turn as the holidays approached. I thought it meant we were giving up; trading hope for comfort care. But I was wrong. From the moment hospice arrived in our home, everything was better.
Hospice is far more than pain relief. It’s a support system for seriously ill patients and their families. It offers medical support with symptoms, emotional support, and help with day-to-day activities that become difficult to manage. Far from the lonely morphine drip I’d imagined, our house was full of life, lightness even, those final months of my father’s life.
Paul came each day to check on Dad. He knew exactly how to care for him and taught us. Mom and I stopped worrying that we were doing it wrong and making things worse. A social worker, Deanna, visited Mom each week to provide emotional support. Belinda, a lovely gentle home health aide, helped Dad with bathing and personal care. Hospice volunteers ran errands and did the grocery shopping so Mom didn’t need to leave the house and worry about leaving Dad alone.
Then one day, a volunteer named Johnnie rang the doorbell. He introduced himself saying, “I’m here to be a friend.” What an unexpected gift he was. He and Dad spent many fun afternoons together. Dad would show him all the things he’d made around the house, and they’d put their heads together dreaming up new projects. Dad could relax with him.
I’m sharing my family’s story because I want people to understand the true nature of hospice and what invaluable help it can be. I also want to urge families not to wait too long. Hospice works best when you have months, not days. Yet, according to 2016 figures released by the National Hospice and Palliative Care Organization in April 2018, over half (54 percent) of patients were enrolled in hospice for 30 days or less, missing out on much of what hospice has to offer.
Please know this: Hospice is not a decision to die. It’s a decision to live well with the time that you have. Mom and I will be forever grateful for the care and support that got us through such a difficult time. It breaks my heart that so many families who need this support either do not know about hospice or reject it. The hospice team I initially rejected became a part of our family. We had Thanksgiving dinner with Johnnie’s family the year after Dad died. Mom, Paul and I still get together for lunch each Christmas. We’ve been doing this for 14 years!
Everyone’s experience with hospice will be different. What’s often the same is how impossible it is to anticipate just what a gift hospice will be. When your family needs this help, please accept it, and don’t wait too long.