My mom has late stage Alzheimer’s and MDS. She is transfusion dependent. How do I know when to stop transfusions and let her go? - AgingCare.com

My mom has late stage Alzheimer’s and MDS. She is transfusion dependent. How do I know when to stop transfusions and let her go?

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Her body no longer produces enough red blood cells to survive. My very difficult question is how do I know when to stop the transfusions and let her go? I lost my dad in June to dementia and I am dreading losing my mum. She is now unable to walk without falling and cannot form a sentence. She is in a 24 hr care facility. She can still enjoy music, chocolates and visits. I feel like I am being judged for keeping her alive but I just don’t feel like I can end her life. She is 82 and I love her so much. She has been a wonderful mother and I can’t bare to make this decision. She is not in pain or mental anguish as of yet. The Dr’s say it’s up to me and I have to do what feels right. Some family say she wouldn’t want to live this way. I am her guardian so it’s completely up to me. No other children. My heart is broken.

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Thank you for your comments. It helps immensely to hear from others that understand. I am going to stick with the transfusions and enjoy whatever time we have left. As long as she is not suffering mentally or physically then I will keep taking her. Thank you again and blessings to you all.
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Reply to Jubejube
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When there is no QOL left and you find yourself wishing she could be released from the misery of her life you'll know it's time.
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Reply to cwillie
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I'm so sorry for your mom and for you to be in this position. I'm an only child too and I sometimes wish I had a sibling to be there in the hard times.

Never act on what others think or say. Please don't feel judged. She's your mom-you know her better than anyone. If you believe she is not in pain and has things she enjoys, then you must follow your heart.

Not being able to walk or talk presents challenges. Can she communicate with you some other way? Does she seem to recognize you?

As long as there are no problems with the transfusions and she tolerates it well, she can keep getting them.

My way of figuring out what to do is;
When my mind, my heart and my gut are all saying the same thing-then that's what I do.

May you be at peace with your decisions for your mom.
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Reply to SueC1957
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Jubejube - I feel I'm in a similar boat. My mom has end stage renal failure. Dialysis is keeping her alive. She also has dementia, falls often, and has lost the ability to do many things. But there are still a few aspects of life she enjoys, like watching movies, listening to music, etc. Ending dialysis will end her life, and everyone has left that choice up to me at this point. I don't feel like anyone is judging me for not ending dialysis - maybe it's different because I'm keeping her at home with home supports - but like you, I find I'm not ready to make the decision to end her life.

I don't know what your mom is like, but my mom is afraid of dying and has a powerful will to live. On the other hand, when she was younger, she was adamant that she didn't want to be kept alive on "tubes and machines". I guess technically being dialyzed is a form of this! But it's definitely a grey area. Since she had no idea she'd be getting kidney disease (and chose to start dialysis when she was of sound mind), I am assuming by "tubes and machines" she meant ventilators and feeding tubes and such.

I've kind of settled it this way in my head. If there comes a point where: 1) mom says she doesn't want to do dialysis anymore or resists/fights the process, or 2) mom is unawake/unaware, or 3) the doctors say she is suffering, then I'll have dialysis stopped. Up until then, we carry on as usual....except, I've had her designated "palliative," which means (where I live), that although her treatments carry on, she will not be resuscitated or intubated (kept alive artificially) if it comes to that. 

If your mom is not in pain or mental anguish - if she's not suffering or resisting treatments - I don't see why anyone should push you to make this decision yet, and I don't see why they should judge you for it. Just because a person has dementia or requires medical treatment, it doesn't make them any less a human being, worthy of the right to enjoy what parts of life they still enjoy. If your mom seems happy, or at least content and able to enjoy things, then I don't see the harm in letting her continue to enjoy them.
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Reply to Dorianne
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