Up until the pelvic fractures I have been taking my mum for blood transfusions every two weeks due to the myelodysplasia (MDS) because even though she has late stage Alzheimer’s she still seemed to be enjoying life (for the most part). Now that she has fallen it seems like everything is falling apart. She is in excruciating pain so they have her on dilaudid in the nursing home. She is starting to develop pressure sores and now she has started pocketing her food and keeping it in her cheeks. I think I am getting to the point where I feel her quality of life is significantly diminished and I may stop the transfusions but I can’t help feeling like I am signing her death sentence. My mum’s friends and some relatives keep saying she would never want to live this way. I don’t know what to do. We have the palliative care conference tomorrow at the nursing home but they won’t make the decision for me. I keep wondering if maybe I should give more time for the fracture to heal and see if she starts eating better once the pain meds are reduced. I don’t want to stop the transfusions until I’m sure that she won’t return to some quality of life. Nothing prepares you for these life changing decisions.
At the conference tomorrow, I believe they will,give you enough input to make an informed decision. I’m sure they will support you no matter what decision you make. No one can make this decision for you. Mum’s friends and relatives are doing you no favors although they may think they are. She’s your Mum and the decision is up to you.
Please come back often and keep us updated. We care!
Ask about a videoscopic swallow study at the care conference tomorrow. Your mother may be developing dysphagia, a swallowing problem that occurs under various circumstances, including as someone ages and deteriorates and loses swallowing capability.
I think one of the key issues is whether or not the fracture can be surgically repaired, or if your mother will continue to be in so much pain.
I'm sorry this has happened, and hope that you'll be able to get some good information tomorrow in the event that you have to make a difficult decision.