I visited a patient once who had just become bedridden and had started sleeping in a hospital bed, which was in the living room. She was in her eighties, although did not look it. She was lovely, so sassy, and still had so much energy, but her physical body was too weak to get out of bed anymore, and she was trying to deal with the fact that she was dying.
When I sat down at her bedside, the first thing she said was, "did you know that I am going to die?" I said, "yes." And then she said, "I don't want to die, I want to live longer, I am not ready yet." She asked me if it was okay to keep hoping for more time, which of course I said yes, we should never give up on hope.
We talked a lot about hope, faith, and prayer, and not giving up just because you are given the news that you are dying. I admired her strength. I said to her, "you are not dead yet... so what are you going to do with the time you have left?" She giggled a little, and her eyes sparkled, and she said, "I am going to find a way to get out of this hospital bed so I can sleep with my husband." The worst part of every day for her, was when her husband said goodnight, turned the lights off in the living room, and walked down the hall to what used to be their bedroom.
She had just gotten a Hoyer lift to make caring for her a little easier, and I suggested that at night, maybe one night (maybe every night) they could use the Hoyer lift to take her to their bed. She started to cry, just the idea of it made her feel better.
When people are given a terminal diagnosis, many times (at least for them) it feels like people stop treating them like they are still alive. Their choices, sometimes their voice, and most often their independence is taken from them. Everyone around them is preparing for their death and they just want to scream out loud, “I AM NOT DEAD YET.”
I am reminded so often by the people who are dying how important it is to not treat them that way. If they have a voice, let them use it. Honor their choices and wishes for how they want to spend whatever time they have left. Listen, not to fix, but to hear. Let them have the last word…and make sure they know they have been heard.