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My 95-year-old mother is in end stage dementia. She has been in an aged care for 5 years now, has not been able to speak for about 3 years, is no longer mobile in any way (for 2 years), cannot toilet herself, feed herself, drink fluids without assistance, and sleeps 20-22 hours a day or more (at least 12 months). She is wakened by staff to be fed, and does manage to eat what is given most of the time (all meals are pureed).


Last week, she refused all food and fluids for 2 days and would not wake. Then, just as we were starting to really be concerned, she woke up and ate a full breakfast. As she sleeps almost all the time, and doesn't even wake when we visit, or acknowledge us in any significant way, should be instruct the staff to stop waking her for meals, and only feed her if she is awake? (Not even sure what their response would be to this request, but I feel it is wrong to be extending her life as it is.)

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Ask them to offer food and drinks in "her normal wake cycles." Ask them not to wake her during "her normal sleep cycles."

Please make sure you have POA for her care and her financial affairs. Does she have a DNR - that will probably be a need in the near future. Without one, her facility will be probably need to send her to the hospital for dehydration and malnutrition in the near future.
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Reply to Taarna
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LadySass: Hopefully she is on hospice. Ergo, she shouldn't be awakened.
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Reply to Llamalover47
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You are right! By refusing food her body is “ trying to shut down”. When she is forced or surged to eat her organs start up again and that can be painful. Let her pass away peacefully. You are not starving her. Her caregivers need to be told to stop!! Hopefully they have been trained about this. Blessings to her as she finally stops suffering. And to you who are allowing her to pass.
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Reply to mpiersmaj
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It's oh so hard, the prolonged wait. I'm so sorry. If she's hungry she will wake up on her own? As long as she's not in pain, let her be. I'd be wondering why she's holding on? Is she waiting to see someone or waiting to make peace with the family or her maker? Has she been given last rites? Has the family given their blessings to leave? It's OK mom,we'll be fine.(small fib) Tell her people are waiting to see you again. It's not easy to say goodbye but it's harder to watch it go on and on. Peace be with you and yours.
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Reply to JuliaH
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Typically in SNF CNAs try to wake residents for food and for meds.

You will need to instruct them if you prefer otherwise.
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Reply to brandee
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I am assuming, indeed HOPING that you are now in an end of life hospice situation. And no, there should be no awakening someone now for medications of any kind, nor for feeding, which will only prolong this torture.
Please tell me that this poor woman is in Hospice care for her comfort as her life ends. She has clearly gone thought enough torment to this point.
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Reply to AlvaDeer
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cwillie Jul 13, 2025
Yes, even though it isn't acknowledged nursing homes are essentially long term hospices and the nurses at these facilities should be experienced enough to spot the differences between general decline and end of life. The hard bit is letting go of control and learning to trust their judgement.
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During her 18 months in a nursing home my mom was asleep or in a twilight state pretty much always except when she was directly engaged with, but staff dutifully took her to the dining room 3 times a day and mom always ate without undue encouragement. I also insisted she had access to music when it was available because even though she seemed asleep when asked she's tell me it was "nice". I think for the most part the systems and routines in facilities are in place for a reason and they work. Food needs to be offered so there is no perception of lack of care. People need to be repositioned and toileted, clothing and bedding needs to be changed, even in advanced dementia bathing can be good for the soul as well as the body.
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Reply to cwillie
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It sounds like your mums life is coming close to its end, and when the body starts to shut down the digestive system is the first to shut down and force feeding or making someone drink can be very painful.
I would just let your mum sleep, and bring hospice on board if they're not already as they will be able to answer any questions you may have and will keep your mum pain free and comfortable until she leaves this world for the next.
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Reply to funkygrandma59
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