Even though the heavens opened up and poured soaking rain, complete with thunder and lightning, hospice angels were plentiful on a recent Monday night at Farm Neck. I would like to say thank you to every guest, volunteer and to all the businesses and artists that made the evening such a wonderful success. It truly takes a community to give the excellent care of hospice, and those who were with us under the tent know the very special connection to our work we all made that stormy night.
Forgive me for not naming all the generous friends who make our soirée a magnificent accomplishment. Rather than creating that very long list, I would like to share the following essay from Julie Hursey. Julie spoke these words at oursoirée and her expressions capture the essence of our work as well as the difference we make to a family struggling and living with terminal illness.
And a special wink to the angel who gifted the picture to the right owner and thanked a hospice nurse in the most delightful way.
— Terre D. Young
Hospice of Martha’s Vineyard,
By JULIE HURSEY
My name is Julie Hursey. My family and I are grateful recipients of hospice services.
I grew up on the Vineyard, graduated from high school and moved away about 28 years ago. My relationship with hospice began this spring when I returned to take care of my dad who is still living in the family house in Oak Bluffs.
Dad is in the last round of his fight with cancer. He has been fighting prostate cancer for almost 20 years. I am pleased to report that right now, cancer is hanging on the ropes and stuttering while Dad is in his corner trying to come up with a stage five. He’s not ready to give up at stage four — I think he has been using Art Buchwald as a model.
In the corner with him is hospice. They provide the cold water and the towels, so to speak and all the support that he and I need to keep going.
I first decided to call hospice after a friend suggested it might be time. Like many people, I was confused about what hospice does. I thought they were only supposed to show up in the last two days of a person’s life. I thought they might be the people who came and measured you for a shroud.
I called anyway, and spoke to Terre. She assured me that it was not too soon to call for hospice support, and there were all kinds of ways that hospice could be helpful at this point in my dad’s life. Life was the word that kept coming up. Quality of life. Not death. No word about the shroud.
I was in touch with hospice over the phone from Alaska, where I live now. They were wonderful about keeping me in touch with how Dad was doing, and able to let me know when it was time for me to come back to be with him in May.
I became my dad’s caregiver then. It was a complicated job, and I was trying to learn by doing it. Hospice nurses Ann and Jane were very helpful and accessible as I learned about medications and wound dressings, dietary problems and dealing with someone with restricted mobility.
Dad was very ill and weak, but then his health rebounded. He started doing much better. There still was a lot of work to do to keep him upright, but I thought I could do it all. Then one day I called hospice again, and I was so tired I think I just made gurgling sounds into the phone.
Terre was very reassuring. She said, “We wondered when you would call for more help. There are lots more ways hospice can support you and your dad.”
That is when I met the hospice volunteers. What an amazing group of people! At first, I was hesitant. I was not sure Dad would want strangers coming in to the house at this point in his journey. Then I thought, what kind of people would be hospice volunteers? Who would want to walk into the hardest chapter a family faces and be present to their grief? They are people of courage, with kind and generous hearts who donate their time and energy and creativity to find ways to make life worth living, right up to the end. I realized I’d like meeting people like that, and chances are Dad would too.
The hospice volunteers come and sit with Dad so I can get out and do errands. More than that, they have made Dad feel like he is not just a patient, or a cancer victim. They listen to his stories, find out his interests, and have brought music and poetry and books into the house.
Then there is the food! Delicious food. There is a woman who cooks every Wednesday for hospice patients and their families, and the food is lovingly packaged and delivered to our house. It is such a relief to have dinner prepared, and this food has delicious organic ingredients cooked with a gourmet flair.
A few days last week, Dad lost his appetite. I could not get him to eat anything, until our hospice volunteer Laura appeared with a delicious basket of food. Dad wolfed down two plates full, and asked me to get the recipe for her cucumbers in yogurt.
Keeping Dad alive has a lot to do with stimulating his senses and keeping him hopeful, letting him know that even though many opportunities are closed to him there are still ways life can delight him. Hospice volunteers have helped me do that with their creativity and dedication.
I told my sister last week that there had been a hospice meeting and the volunteers had gotten together and were coming up with ideas for how to support us. She was very deeply touched by this. She said, “You know, I thought we were alone taking care of Dad. I cannot believe that there are people we don’t even know who are thinking of how to make this easier for us. It makes me have a whole different view of human beings.”
I agree. Having hospice share this journey has made all the difference.
Since I left the Vineyard, I have spent much of my life on the water in Alaska, commercial fishing and running boats. So many of the metaphors that come to my mind are from my life on the ocean.
This last chapter of Dad’s life reminds me of being on the water at night. Everything seems ominous and uncertain. There are uncharted hazards to watch for. I cannot see the big waves coming. Then there is hospice, like the bright beam of a lighthouse, marking the channel home.
Hospice volunteers are like mast lights of other boats, keeping us company at sea so loneliness does not overwhelm us. I am so grateful for the hospice staff and volunteers. They are the keepers of the light, and offer all of us courage and hope for the journey.
Thanks also to all of the people who donate to hospice and make it possible for them to be present for people in their darkest hours. In this broken world, sometimes it is hard to imagine a way in which one person can make things better. When you donate to hospice, whether you give money, goods or your time, you become part of the human chain that reaches people in very real ways, when they need it most. You can be very proud of your involvement with hospice. Together, you are doing good work in the world. Thank you.