Navigating Hospice Origin Story

 Welcome to Navigating Hospice.

My name is Erica. My family and I were suddenly introduced to the world of hospice care after what should have been a very routine biopsy. Our Dad went in for a routine biopsy of a probable cancerous mass on his liver. The biopsy resulted in internal bleeding, aspiration during the “fix” surgery, resulting heart failure and therefore some time intubated. I don’t say any of this to pass blame or to point fingers. I only bring this up as part of our story to share the suddenness and the slap in the face that this situation presented itself to us. We had the best care and could not have had a better team.

When the biopsy results came back our oncologist told us it was terminal and inoperable liver cancer. Our time frame at the time was days, maybe weeks. We’ve since progressed and improved to the 2-4 month time frame, but still in the hospice scenario.

While we aren’t total newbies to the hospice environment. My Mom had a similar story of finding the bile duct cancer and having 13 weeks on hospice in home. We had an amazing hospice experience with Momma. However, with Daddy, we are choosing to treat him in an assisted living facility with hospice on-call versus at home.

Whatever your previous experience with hospice, each situation is different. You may be wondering “Where to start?”  “What resources do I even need to know about?”  “What can I do to make my loved one comfortable?”  “How can I support my loved one – while not going crazy myself?”

This resource is meant to be a compilation of research, stories, resources, and checklists you may find helpful as you navigate hospice. Realize the research is done by a human and things – especially in the government portion/medicare of healthcare in the United States – change often. If you see something that has changed, fill out our form and let us know. We want this forum to be as accurate as possible.

Please know we understand the journey is hard. But it is also sacred. It’s a blessing to be present – in both mind and body – for a loved one who is undergoing this life change. We are honored that you’ve come here to gather whatever nuggets of help fit in the moment you’re looking for them.

In service,
Erica