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My question deals with a very strange end of life predicament. My elderly mother has advanced stage Parkinson's disease with what seems like dementia or perhaps Lewy bodies. Confusion comes and goes. She is also blind. In her very sleepy or relaxed state -what I would call subconscious she begs me to please let her go, that she is ready to go- that she does not want to stay here any longer- that she does not want to and will not do any thing else to stay here! etc.


Its very obvious she is talking about making her exit and is ready. I have even talked at length with her in this state and told her that was ok I would be ok with whatever she wanted to do, do what she needed to do. NOW here's the strange and very odd thing. It may be dementia, or perhaps the "in-control" person- but when she is awake and alert she tells everyone she is fine and doing pretty well. When you take one look it's obvious she is NOT. She weighs in under 76 pounds, has a horrible pallor, covered in bruises just from being touched, cannot open her eyes, and is lying in the bed sleeping most of the day, as in 22 out of 24 hours. Add to that pneumonia and aspiration. I am guessing a conflict or is it just the in control person who she has pretended to be her entire life. Anyone else experience anything like this? By the textbook she is dying according to Hospice material, but not according to her in her awake state. So in other words she is just lingering in a zero quality of life state.

Have you told her that it is okay for her to go? Instead of whatever you need to do mom. She is reading something different than that you are letting her go.

My BFs dad wouldn't pass until her mom said "It's okay for you to go, we will all be okay." He died within the hour, after lingering for weeks.

Just a thought.
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Anniepeepie Oct 18, 2018
I believe I have. In these very stressful and non sleeping times, you know, I cannot recall everything. I will tell her that though, in case I haven't ....thanks!
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It sounds as though your mother is very ill but is not actually in pain or in distress. I am not sure that I would call this ‘zero quality of life’. You haven’t said that her behaviour is difficult for you to bear – that she is abusive or violent. Perhaps you just need to let her live out the rest of her life, sometimes confused, sometimes with inconsistent thoughts. You are doing the best you can, and your love provides quality to her life now.
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Anniepeepie Oct 18, 2018
No she is never abusive or angry or violent. Quite the opposite. Just cannot do anything but lie there. Im sure it must be frustrating for her. She was always a do-er and even joked with me years ago that I was not to prolong her living once she couldn't do anything= that if she got so much as a cold- to just let her die.
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Is she saying the two different things to you? Or 'let me go' to you and putting on a brave face to other people? It might make more sense.
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Anniepeepie Oct 17, 2018
yes, in her alert state she tells me she will "try to live" and in her sleepy state- the opposite
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I am so sorry. Everyone passes in their own time and their own way. My MIL was asleep most of her last six months and when she was awake, she’d talk to my FIL who had passed almost ten years before and she said was sitting in a chair by her bed. We never dissuaded her. We took one day at a time. It’s not easy to witness this. Do what you can to somehow enjoy the lucid times. It makes the other times, the difficult times, easier to bear.
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