Mother has late stage Alzheimer’s, Myelodysplastic Syndrome and has fallen and fractured her pelvis in two places. I don't know what to do.

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J

Jubejube Asked May 2018

Mother has late stage Alzheimer’s, Myelodysplastic Syndrome and has fallen and fractured her pelvis in two places. I don't know what to do.

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.

Alzheimer's & Dementia Falls Family Caregiver

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score 2 · Answer 1

My Mom fell and fractured her back and both sides of her pelvis. They couldn't do any surgery. All healed by itself but it's been a long year. It really speeded up her dementia. I am sorry I do not have a good answer. This is awful for you I know. I send you love and wish you Grace and Peace my friend.

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score 2 · Answer 2

Gosh Jube, my heart goes out for you. It's like we're all facing this crap together; maybe at least that's some small comfort. My mother weighed in at 137 pounds at her doctor's appointment yesterday, yet claims she is eating fine and just isn't that hungry. The mixture of physical pain, mental dementia, and physical breakdown that our mom's seem to go through at their stage in life leaves us all wondering just what in hell's name do we do? I don't have answers, but do understand and sympathize with your plight. I have had to realize that my mother is in the final stretch of life, whether that stretch lasts another two months or five years I do not know. I am not God. But there comes that point when when we realize that our mothers are not going to get better, and we have to deal with it on a daily basis in our own way. May God be with you.

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score 2 · Answer 3

Jube, your mother isn't pocketing food deliberately or intentionally. This happens when someone isn't able to successfully swallow, and/or is putting too much in the mouth instead of taking smaller spoonfuls. The food ends up in mouth pockets instead of being swallowed.

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.

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score 2 · Answer 4

I am so very, very sorry you are faced with this, Jube. It totally sucks to be a grown-up. Mom is displaying typical demented behavior. It may resolve once she’s dialed down on the pain meds or it could be a “new” behavior caused by the dementia and trauma she’s been through lately. Dementia patients don’t do well with any change in their schedules.

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!

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Mother has late stage Alzheimer’s, Myelodysplastic Syndrome and has fallen and fractured her pelvis in two places. I don't know what to do.

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