Life is often difficult, and at times can even be frightening. Growing up I was terrified of storms. It wasn’t the thunder or lighting, but just waiting on the unknown. While I still respect storms, I don’t fear them like I did because I now understand how to prepare for when it does.
I have a family member who was diagnosed with ALS (Lou Gherig’s Disease). When he was first diagnosed we were all terrified. We knew the damage that this particular disease was going to inflict on someone that we loved so much. He knew that his disease was terminal and that his prognosis was grim. At the time we were afraid. How do we continue living without this person? What was death going to be like?
As the disease progressed, our fears got worse. My loved one began to succumb to the disease and his symptoms became unmanageable. This is when his physician discussed the hospice benefit with our family. He shared that hospice is available for anyone who is facing a life-limiting illness and has been given a prognosis of 6 months or less.
Now it seemed as if all of our fears were about to be realized. We thought that hospice meant imminent death. We thought that the pain would only get worse. But we were wrong.
As soon as our Hospice Case Manager entered our home, we began to feel relief. We were no longer alone, and we had an advocate who was available and who had the answers to our fears.
Hospice workers are end-of-life experts because that is what they do every day. They educate you on what you can expect
, they manage patient symptoms and they provide emotional and spiritual support. You become a part of their hospice family. Each hospice team member always takes a part of each of their patients and families with them.
Because of the answers that our case manager provided, the fear was gone. We were still sad, but we knew what to expect. On our hard days, we had a friend that we could lean on who had been there before.
Eventually my loved one lost his battle with ALS. The following days were a blur of arrangements, visitors and the funeral. After the funeral the quiet came. The nurses were no longer visiting and our friends were back to living their life. But a few days after the funeral I received a call from a member of the hospice team I had not yet met – the bereavement coordinator. Hospice isn’t just for the patient, it is also for the family. For over a year I received bereavement care from the hospice team, and this care helped me find the hope that existed for brighter days ahead.
Hospice care changed my life, and it is available for everyone when the time comes to make those decisions. Don’t wait until it is too late. Choose to have end-of-life conversations today, and plan in advance for what you want to happen when it matters most.
