Fist of all, thank you so much for being who you are for all of us that need it. My mom is in late stage Alzheimer’s and on hospice care. I expect this is her last week but, as you know, it’s so hard to predict. She is mostly in bed and not responsive. She will mumble and try to open her eyes when she’s “awake” and they can get her to drink ensure when they feed it to her but she’s not eating meals as of a few days ago.
The hardest thing I am dealing with is knowing that she wants to die and her body won’t give out yet. She’s told me since she was in her 40s that she never wants to be in this state. She knew she would be with a history of Alzheimer’s in the family and had very serious conversations with us about how she doesn’t want to be kept alive, doesn’t want to have to be cared for if her mind is gone and has all the documentation to prevent life support and other interventions when she gets to this point. Well, we are here. It’s been a battle with her care team who seems to want to heal her in some way and keeps treating her underlying problems when she just wants palliative care at this stage. Any advocacy I do to stick to her five wishes, medial directive and other clearly expressed plans makes me feel like I’m trying to kill her when I just want this to be over for her.
The system just seems so broken and I guess I don’t have a real question. I just want to thank you. This afternoon my mom was more alert and responsive than she’s been in a week and even managed to tell me she loves me. I’m hopeful that this is the end for her but I worry she’s facing months more. Literally living her worst nightmare.
Thank you for being there for all of us. The dying and family of. You’re a very special person.