Taking care of children on hospice can be very difficult for many. Although it can be emotionally hard, I find that these special patients also need loving care, it just takes a different approach.
When I first met Taylor she hated nurses, doctors, and anything of the sorts. She had been born with a disease and had spent her lifetime in and out of doctor’s offices. When I first went to her house she would run from me, figuratively speaking. She would quickly drive her wheelchair into her mom’s room, lock the door and hide. She didn’t want any part of my care.
I know kids are different than adults, so I had to approach this situation differently. A child’s eyes see things differently, so I got down on her level. I took some time to see what things she liked and did not like, and I figured out that she was spunky and liked to play games. I tried to make our visits fun and it wasn’t long before she wasn’t afraid anymore. We got to be good friends and she gave me the nickname, Pickle, because I am tall, skinny, and apparently prickly.
When it was time to give her a bath, we would BOTH get soaked! I would give her some of my latex gloves which she would fill like water balloons and as soon as she would fill them up, she would dump them on me. We did this over and over during each bath. It brought a smile to her face and her joyful play touched my heart.
When the Care Navigator and I found out that she loved silly string we decided to plan a silly string fight. We got some silly string and invited her sister and cousins to join us and we proceeded to have a huge silly string fight in her driveway. It ended up being a blast!
Like with all my patients, at some point it becomes time to say goodbye. The sweet memories that I made with Taylor will stay in my heart forever. After she passed, her Care Navigator and I wanted to do something special with her siblings in remembrance of Taylor, so we decided to hold another silly string fight. It turned out to be another special day. We understand that even though these siblings hurt and have lost a lot, they also are kids and they like to have fun.
Our Bereavement Counselors continue to work with this family to help them keep Taylor’s memory alive as well as deal with their grief. At Heart ‘n Home, we understand the special nature of working with children and their families. One thing that is unique with pediatric patients is that they can continue to seek all treatments with their regular doctors along with hospice. This means they can still fight the disease and benefit from the services of hospice. We also understand the impacts of grief on children when they lose a sibling, or parents when they lose a child, and we have a bereavement program focused on their needs.
We won’t forget you, Taylor!
If you have questions about how our hospice team can work alongside a child’s team of doctors, contact us and we’d be happy to meet with you to discuss your needs.