Where are we at here?
I have these questions, and no one can just give me a straight answer.
My mom (66years old) was diagnosed with ALZ, in 2022. I guess we can call it EO because she was 63 years old at the time of diagnosis. She has type 1 Diabetes and last month she was put into hospice at home. She was hospitalized Oct 17 for her blood sugar going low and then spiking to 500 without eating anything. She seemed to be in a coma for a minute, completely blank stare and not breathing and she went limp. So, she went to the hospital and I was able to get her on hospice when she got home. The day before she could walk and talk, she went to the hospital and she hasn’t walked since. She is now bed-ridden, and we take care of everything from feeding to changing. She can start a sentence but not finish it, sometimes she forgets how to swallow. Her body is stiff, she doesn’t move her legs, and she has her arms crossed and can only move them up to her face. But she is going to the bathroom, drinking a few cups of water, and eating at least 4 oz of food for every meal.
I have nurses coming in and telling me today or tomorrow, other nurses say 6 months. Some days she just sleeps and is completely lost. Yesterday she had full sentences and told me how much I offended her by watching ‘trash TV’. I know if she is in hospice, she has a prognosis of 6 months, but I have heard ALZ patients are most likely the ones who graduate from hospice. I know infections are more likely to kill her than the disease. I see her blood sugars, and I can’t tell if her body is shutting down or not. She only bed sores on the bottom of her feet, and those have begun to heal. I just don’t know. Is she actively dying or do I have months left taking care of her?
I do not want to sound callous; I love my mom. But I am 30 years old and have moved my mom and dad into my house. I have two kids a 1-year-old and a 4-year-old. I see how it affects them, seeing her every day get worse. They are growing up in this grief and they don’t even understand death. My oldest is breaking my heart seeing her try to play with grandma and pretending to be her nurse. I want her to pretend to play house, not pretending changing my mom’s insulin pump and tucking her into bed. I know its good for them to have a relationship with their grandparents even if she is sick. But I want to know where we are with her, is she dying or do I have some time left with her. I don’t know if my kids can deal with seeing grandma die. This whole situation is making them grow up too fast.
When I read about actively dying, a lot of symptoms just sound like regular ALZ. When I ask the nurses what to look for, they say to wait until she can no longer swallow. For anyone who as lost someone to ALZ, what did you see? Can anyone tell me what to look out for when she passes?
Comments
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You might want to try to get her into a hospice facility where you can visit but do not have 24/7 care, or possibly a nursing facility. You are asking a question that no one can answer. She may have a crisis + go in days, like the last time she went to the hospital, but this time she would not be hospitalized. She could also last for months. I dont think anyone has a solid answer for you, sorry.
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so sorry you are at this point. There is no answer. If hospice nurses can’t tell you nobody can. Each person progresses and transitions in their own way as there are so many factors to consider. As terei suggested contact hospice and see if they have a hospice facility where she can be placed and cared for. You can visit her and they will call you if anything changes. Many dementia patients pass away from aspiration pneumonia because they can no longer swallow. That’s why the hospice nurses said that. Praying for a peaceful transition for your Mom. 🙏💜
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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