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Hospice nurse and company are telling me this is a normal process of dementia, but I don't believe it. Mom is having to take painkiller all day.

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My dad was diagnosed stage 5 and within a month he was like at the end. We gave him morphine all the time.
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Reply to PeggySue2020
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Have they checked for a UTI , that can make dementia patients worse until they are given antibiotics and it's cleared up.

But also there is no rhyme or reason why some linger in one stage for a long period of time and some decline quickly.

So sorry 😞 🙏
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Reply to Anxietynacy
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Roseformom Aug 17, 2024
Yes, mom had a UTI 3 weeks ago, but was given antibiotics. That was the beginning of this steep decline and pain. I'll ask hospice to check for UTI again to see if it's gone. Thank you!
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If your mom is under hospice care and is at end of life, of course she's going to be in pain as all her organs are now starting to shut down, and that in itself can be quite painful.
And if food or drink is being forced on her that too can be very painful as the digestive system is the first to shut down in the dying process.
My late husband who had vascular dementia was in excruciating pain for about the last year of his life, and it continued right up to the end, and hospice couldn't get it under control even with the highest dosages of fentanyl.
It was heartbreaking to watch the man I loved suffer so right up to the end.
If the painkillers are helping your mom be comfortable and pain free, please by all means continue them so your mom can die in peace.
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Reply to funkygrandma59
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AlvaDeer Aug 17, 2024
"If your mom is under hospice care and is at end of life, of course she's going to be in pain as all her organs are now starting to shut down, and that in itself can be quite painful."

As am RN I assure you that Funkygrandma is absolutely correct.
Please encourage hospice to medicate to a level of comfort even should it hasten death by some minutes, hours, or even days.
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This is normal, giving more pain killers. She may be sleeping all the time. Better for her.
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Reply to JoAnn29
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I’m curious as to why you don’t believe the hospice nurse and company.
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Reply to Fawnby
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If mom is in pain and the "painkillers" are not working for her Hospice should prescribe something else for her pain or if it can not be managed at home then the transport her to a Hospice In Patient facility and manage the pain.
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Reply to Grandma1954
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You mentioned recent UTI?

Urinary tract infections may spread to the kidney, causing pain & even sepsis.

My LO had abdo pain. UTI, constipation & kidney stones found - not sure which came first. Not sure which issue was causing the pain (or if all three were). Surgery for kidney stones, then IV antiobiotics finally cleared infection after weeks. Was grueling & lengthy.

With end stage dementia, I would imaging you want to avoid invasive treatments. Therefore comfort care may be the best you can do.
I am so sorry.
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Reply to Beatty
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Roseformom Aug 24, 2024
Mom did have kidney stones years ago that sent her to the hospital, but thankfully she recovered. It could be that again, something else, or the end stages. Wish mom could say exactly what it is. Thank you💗
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Rose, a UTI was the beginning of the end for my father who did not have dementia. He went from being fine to getting a UTI and dying 19 days later. Even after a round or 2 of antibiotics, his body could not recover. Hospice did administer pain meds during the last week of his life.

My mother, with advanced dementia, was fine too, hanging around in the activity room all day long in her Memory Care Assisted Living facility. Then one day, she went to bed and became semi comatose. She died one week later, to the day. Hospice did give her morphine for pain the last few days of her life. She died peacefully, as did dad.

We're never expecting the end to come when it does, and it's always difficult and traumatic. Wishing you peace and strength as you go thru this,
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Reply to lealonnie1
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Roseformom Aug 24, 2024
Thank you💗
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Just keep her comfortable , that’s what is important at the end stage of dementia .
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Reply to waytomisery
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Thank you everyone💗 I appreciate your helpful comments and support!
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Reply to Roseformom
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Rose, I wrote recently about hospice not killing my mother, though probably shortening her life by a couple of days, and said that many people don’t realise how close to the end their LO actually is. My mother was talking quite rationally to me on Wednesday and Thursday, declined over several hours and died on Saturday at about midnight. The end can come very quickly, for which be thanks.
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