Palliative care is specialized medical care for people with serious illness. It focuses on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Don’t be afraid to talk about this with your family members, we all die one day.
One mistake I made after my bone marrow transplant was not having a palliative care team. It was basically a rushed transplant because my condition was so severe. I returned home after being hospitalized for 3 months and felt alone once I entered my room. Tears came down my face because I was no longer in a hospital bed. I looked at my own reflection in my mirror with no hair and cried because that was the new me now.
I’m still learning how to live with a chronic illness without being so stressed and in pain. So I would highly recommend having a transplant team that offers palliative care. It will offer support for your family as well.