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We saw a kind, thorough Palliative care team NP yesterday. She’s pretty certain mother has advanced dementia, and didn’t bat an eye at us declining a feeding tube. Once she explained this is dementia and not just a temporary delerium, I felt ok with denying tube feeds. Mother is also already to the point of being unable to safely swallow, and seems to be refusing foods anyway. Speech therapy said she failed her swallow test. They say we can do comfort feeds, which so far seem like she’ll refuse anyway. She is keen to drink water, but chugs it and coughs a lot after. I was thinking of getting a dropper, but we’d have to see if she’d accept it.
They had a little trouble with placement since she’d gotten violent at the rehab. But got her in a SNF where my friends mother also did hospice so at least I’ll have someone who knows how they work. Mother is almost child like now, a few garbled simple sentence and words, lots of silence, and random groans. What’s interesting is she loves my husband (always been fond of him) , but now lights up when he’s near. And barely shows interest in me.

There are products that will thicken the water so she will not choke. I am surprised that Hospice did not mention it. Perhaps it will be added to fluids when she is in the SNF. (If not please make sure that they add that to the notes when she is given anything.. the last thing you need is Aspiration Pneumonia to deal with)
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Reply to Grandma1954
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When my father was placed in SNF in 2016 , when he was dying , Medicare would not pay for his bed and hospice , even though typically Medicare normally pays a portion of the first 120 days . They would only pay for one or the other . My mother did not want to pay the 10,000 a month for his bed . So he was put on “ comfort care “ , which basically was the nurse’s would check him often and he was given the same pain and other meds that hospice would have given . The whole staff knew he was on comfort care and they did check on him more often to make sure he was clean and comfortable . They told me the extra attention they gave , that they would be doing the same for him on comfort care that hospice would have done . The SNF suggested comfort care . They said it would have been a waste of money to have Mom pay for the bed and have hospice come in when they could provide the same care on comfort care . Between Medicare and my father’s supplemental insurance , Mom paid nothing for his bed . It worked out well . Saving that money for 2.5 months of SNF care was helpful since I had to place Mom in assisted living a year later . That savings paid for 6 months of my mother’s AL bed.

I’m not sure if it’s still the same now where Medicare won’t pay for the bed and hospice . Something you may want to ask the SNF about if Mom has no money to pay for her bed , unless Mom is eligible for Medicaid to pay for her bed .Don’t spend your own money for your mother’s bed .
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Reply to waytomisery
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She’s where she needs to be. She’s taken you on a wild ride but it seems like she was always going to go that way. I hope you are getting a break and finding so peace as she enters this last phase.
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Reply to ShirleyDot
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If she wants water, ice chips may be better. I have problem with water and drink it in sips. Not sure why it does not go down as well as soda.
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Reply to JoAnn29
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Oedgar, so glad a SNF was found and that there’s a diagnosis and plan in place as your poor mom’s life comes to its end. But this is so hard. 😞You’ve been a great daughter and caregiver. I’m sorry she is not able to acknowledge this at this point but it’s the truth and you’ve lovingly done everything you can.

Thinking of you. 😊
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Reply to SnoopyLove
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I hope your mom is actually under hospice care and not just palliative care as there is a big difference between the two.
Hospice will make sure that your mom is now kept comfortable and pain free, and will have a nurse come once a week to start and aides to come bathe her at least twice a week, where palliative care only sends out a nurse every 4-6 weeks to check on your mom.
I'm glad you opted out of the feeding tube as that would have only prolonged the inevitable.
So just enjoy whatever time you may have left with your mom and make sure you leave nothing left unsaid.
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Reply to funkygrandma59
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Oedgar23 Jul 15, 2025
It will be hospice. The palliative team put in an order after we decided.
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I am so sorry. I am glad there will be hospice care now. Your mother is dying and once swallow is affected it is end stages. Please don't force any food or fluids. Keep mouth moistened. You may HASTEN death by forcing fluids. The coughing indicates that she is swallowing water into her lungs. Think of it as drowning someone by allowing fluid to enter their lungs. Allow hospice to provide medications to keep mom sedated even if this hastens death by some moments, minutes, hours or even days. This is a miserable torture from now on for her. I am very sorry, but Mom deserves and needs peace now. I hope you will only experience relief when she is delivered from this torture, for her, for you and all who stand witness to this sadness.
Please don't prolong this, nor allow others to.
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Reply to AlvaDeer
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