At the end of life’s journey: The heart of Hospice

By Karen Donato 
Staff Writer
    The following article is an account of my friend’s experience with Hospice. Tom is a fictional name, but the story is real. Knowing this family and being a part of their day-to-day journey, I wrote from the heart and through the eyes of his wife.
    It was a beautiful day in July just a few years ago when my husband and I were informed that he had cancer. He had never really complained about not feeling well. We had put in a new heating system the previous summer and at 74 he was due to have a few aches and pains. The furnace was a geo-thermal heat source and my husband did a lot of the work himself. It took many trips up and down the cellar stairs.
     Early in the spring Tom had been bothered with some back problems and thought it was due to the over exertion during the project.
    Near the end of July, with the pain intensifying, we visited the emergency room early one Sunday morning. They took some X-rays and told us they saw something suspicious in his lungs. They were going to set up more tests, possibly a trip to Bangor.
     We left the hospital and went on to participate in some already planned activities, but due to the pain Tom was in, our day was shortened and we went back home. 
    The next week, the tests were scheduled and the diagnosis of cancer hit us like a ton of bricks. Melanoma was the specific kind. Tom had an occasional spot on his face, but by the time he went to see a specialist it would be gone. Little did we know once it surfaces, it then travels through the body.
    We knew surgery was in the future so we decided to spend a few days with our camper along the coast. We took some day trips to the outer islands, but discovered once there, Tom didn’t have the strength to do much walking. We arrived back to the camper. Tom was cranking the awning down when a bone in his arm broke.
    We went to the island hospital where they told us he would need to have surgery, but that we should see an orthopedic specialist in Bangor. We called our son to come to the campground to get the camper and bring us a vehicle so we could drive to Eastern Maine Medical Center. Once at the hospital, they had no beds available so we drove on to our hometown. We got to the emergency room there, and our doctor knew right away that Tom should have stayed in Bangor. He made the necessary calls and back to Bangor we went.
    The surgery was completed, but further testing revealed the cancer was in the bone and had affected the vital organs. When asked how long he had, we were hoping for years, but the answer was weeks to months. That fall we started looking to holidays. Each one was a milestone.
       Two of our doctors in Bangor suggested that we look into hospice. So when we got back home we spoke to our primary physician and he highly recommended it, too. His office referred us. I didn’t know much about hospice; some of my friends had used it, but that was about it.
    Tom wanted to be home. He didn’t want me to be running to the hospital and spending hours or going home after dark. Our son was close by working in the shop right here on our farm. Whenever I needed him to help he was there. I was very fortunate. Our youngest son and daughter lived away, and they took turns coming on the weekends
     Soon after being referred hospice nurse, Jane Zimmerman came to meet us. We also were visited by the medical social worker. They both helped us understand the program. They called us by name and encouraged us to ask questions. They took their time and didn’t make us feel like they wanted to get on their way.
    A home health aide came every morning, seven days a week. She had a special way to make my husband comfortable. Nearing the end, she came back to get him ready for bed each night.
    Every member of the team was so reassuring. They wanted us to know that if we needed anything or had questions all we needed to do was call. They all made us feel that we were family. That meant a lot to us.
    There came a time when Tom needed a hospital bed. Jane made the call and we had the bed right away. We tried it in the bedroom first, but he wanted me to be there with him. That was hard because I still needed to cook and get meals. So we moved the bed into the living room so he could see me in the kitchen. That worked much better,
    Tom came to the table for family meals as long as possible, but when he was confined to his bed, he could still hear and see us from the living room.
    Being at home was so much better than being in the hospital for us. I realize that doesn’t work for everyone, though. It was quiet, and familiar. Friends and family came by to give us support.
    Tom had started a project of refurbishing an old family tractor, but hadn’t finished it. Our grandson came from out of state many weekends and took time off from his job to complete it. Tom was able to go outside with some help and have his picture taken with the tractor. That was so special. It was our last photo of him outside.
    If it hadn’t been for hospice, he might not have had this opportunity. Having Jane checking in with us every day and having the experience with dying helped us. She was there telling us what to look for and making us feel more comfortable in our situation. We also met new trainees for the program. We saw Jane as a teacher, and unknowingly she was teaching us, too.
    The prescriptions that Tom needed were very expensive, but through the hospice program they were able to help us through that as well.
    After Tom’s death, many of the caregivers came either to the calling hours or the service. That meant a lot to us. We didn’t feel that we were just another client on a list, but they sincerely cared about us. This is the way hospice works for all families. The hospice program continued to provide us with literature each month for a year that helped us deal with our loss. They even called me a few months later to see how I was doing and if they could help in any way.
     I saw Jane in town one day and it was like seeing an old friend or a family member. There will always be a special bond between the members of Tom’s team and our family. Our family was so thankful to be a part of hospice.
    I would encourage anyone facing a terminal illness to utilize the talents of Visiting Nurses. Nothing can ever take the place of the one you love and no one wants to live in this nightmare, but having this organization supporting you can make all the difference in the world. 
    For more information on the Hospice program, please call the VNA at the following numbers: Houlton, 532-9261 or 1-800-244-4236, Caribou, 498-2578 or 1-800-439-3111, Ft. Kent 834-3918 or 1-800-734-3918.
    This concludes the series on the hospice program. I hope that it has been educational and that some of your questions have been answered.