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Feeding tube is being considered for mom. Mom is bedbound, has dementia, and due to pain in sitting position from sacral ulcer-wound, sustained after 4 day hospital stay for DVT, eats and drinks little. Anyone have any perspective, personal experience or insight? Love my mom. She is my life. My brother and I have been her full time caregivers for past 2 1/2 years. We are not sure what to do.

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Have you made any decisions yet? Does your mom have an Advance Heathcare Directive. It might answer whether she wants artificial hydration or nutrition, under the circumstances. For people who have a terminal illness, like dementia, they may not want to extend life. That's why I chose Palliative care and then Hospice for my LO who has dementia. I read a lot about feeding tubes when my LO was in earlier stages. I was surprised to find that professional organizations point out how they offer a host of their own issues and may not extend life at all. There are risks of infection and I also found that people who have acid reflux are not good candidates. If the patient pulls at the tube, they may need to be restrained. It just didn't seem to be anything about it that seemed right for my LO. We are focusing on keeping her as comfortable as possible for so long as she has.
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Reply to Sunnygirl1
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I would not do it. I would request comfort care and a hospice consult. Feeding tubes prolong life and sometimes that is the right way to go, but it sounds like your mother is very ill. I would focus on her quality of life. Also I have seen people with dementia rip out their feeding tubes. You are facing a hard decision and I hope you find peace in whatever decision it is that you and your brother make.
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Reply to NYDaughterInLaw
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My husband first had a feeding tube put in shortly after he had a massive stroke back in 1996 when it was discovered that he wasn't swallowing properly. Less than a week later it was removed as he was back swallowing ok. Looking back on it, I believe the Dr's jumped the gun on putting one in and should have waited to see how my husband progressed. Jump ahead to Nov. 2018 and my husband was back in the hospital with aspiration pneumonia. I was told he wouldn't make it through the night. Well he did and was later taken out of ICU and put on the pulmonary floor where Dr's still gave him a grim prognosis. He wasn't swallowing well then either and the discussion was had on whether or not to put a feeding tube back in. Because the Dr's at that time felt that my husband would not be alive for long, I opted not to put my husband through that. It was at that time that he was given thickened liquids and pureed food. Well to the present time. yes, my husband is still alive, has vascular dementia, is bedridden and still is on thickened liquids and softened foods, and does ok with that. Occasionally he gets choked, but thankfully not often.

I guess if I were you, I would ask her Dr's what they feel her prognosis is, before I would put her through having a feeding tube put in. Maybe just try putting "Thick It" in her liquids and pureeing her foods and see if that helps. People do stop eating and drinking when they are nearing they end of their life. That is normal. Also you may want to ask about that ulcer on her sacrum. If it's a Kennedy ulcer that usually is terminal, so putting a feeding tube in might be futile at this point.

I am so sorry for what you and your family are going through right now. There's nothing easy about it. My heart goes out to you. Stay strong and know whatever you decide, it will be ok.
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Reply to funkygrandma59
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https://www.choosingwisely.org/patient-resources/feeding-tubes-for-people-with-alzheimers/
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Reply to cwillie
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Sendhelp Jun 30, 2020
Another great resource, thank you!
The family chose thickened foods, and hand feeding. There is so much improvement over 7 days.
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lealonnie1 said it all. If your mom had a living will and a DNR, you probably wouldn't be asking the question, you would just fulfill her wishes. Not having either document puts the onus on you. Has she ever expressed her end of life wishes to you? If not, what do you TRULY think she would want done? Sure, you would like to extend her life, but at what cost? No, I wouldn't recommend a feeding tube. Incidentally, is she on hospice care? That would provide both you and her with some comfort.
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Reply to sjplegacy
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First of all, is your mother seeing a wound specialist? Call her PCP and ask for a referral for a wound care specialist and ask for advice for pain medication. She needs to be turned every two hours when in bed, the key is to get her off that pressure sore by changing her position frequently. The ulcers are very painful, not surprised her appetite is poor. RN should be doing a home visit to help treat her decubitus ulcer. Did the hospital set up a wound care specialist for home or outpatient? What did they do for her? If not I would call quality assurance at the hospital, and explain your concerns.
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Reply to earlybird
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What are your mothers end of life wishes? Does she have a signed DNR in place? If so, I would not be utilizing a feeding tube to prolong a life that's hindered with dementia, ulcers from being bed bound, and pain of this magnitude. If she does not have a DNR in place, you have to ask yourself this question: what is best for MOM? Would she want her life prolonged in THIS CONDITION? I wouldn't, if it were me. My mother has dementia along with other health issues and chronic pain. If I were in the position to make this decision, I'd say NO, hands down.

Love means doing what's best for your loved one; not what's best for you. Keep that in mind when making future decisions. Prolonging someone's life is often done for US rather than for THEM.

I was a receptionist at a Memory Care ALF before the plague hit. We had a Catholic deacon who'd come in to hand out communion on Sunday's. He & I got to talking one morning about dementia, and how both of our mothers were in Memory Care homes suffering with it. He told me something profound that I will never forget: He said he prays daily for his mother to die. He knows that her life in Heaven will be SO much better than it is here on Earth, and so, why would he NOT pray for her to pass? That statement allowed me to continue praying for my own mother's peaceful passing, without guilt or the belief that I was 'wishing her dead'. I am, in reality, wishing her peace.

Wishing you the best of luck.
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