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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.

I would like to thank everyone who replied to me. Thank you for taking the time and thank you for sharing in an attempt to help me and my family. My beloved mom died in July. I am filled with regret. If I may, my message to all the caregivers of relatives, particularly the 24/7 ones, is that if-when you feel exhausted, frustrated or just at a loss, stop for a moment and realize that you have your loved one. I so wish I still did.
Thank you again.
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Reply to Bgbn24
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AlvaDeer Feb 7, 2021
So very sorry for your loss Bgbn. Hope you will stick around and give your opinion and your voice to attempt to help others.
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Post is 2 months old, has the OP been back? They’ve surely made a decision by now...
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Reply to worriedinCali
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NobodyGetsIt Aug 15, 2020
Good catch "worriedinCali," - I usually look at the dates of the post but, obviously I missed this one!
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There is a long time poster on Aging Care that had a feeding tube. Her name is Veronica. I havent seen her posts in awhile. You can do a search with her name and the words feeding tube and you will see several posts.
Here is one where she responded. You will need to scroll through a few answers until you come to hers.
You might find what she has to say about her personal experience helpful.

https://www.agingcare.com/questions/my-mom-has-parkinsons-and-the-disease-stops-her-from-eating-and-drinking-she-cant-swallow-should-we--446422.htm?orderby=recent
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Reply to 97yroldmom
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If a feeding tube will improve your mom's quality of life then I say get it done for her, but not if it won't. If all it will accomplish is to prolong her life when she is suffering and cannot improve then it's not worth putting her through it.
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Reply to BurntCaregiver
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Dear "Bgbn24,"

I feel bad for you and your brother as you try to decide how to handle making a decision for your mom in regards to a feeding tube. It certainly sounds like she is going through a lot.

When my mom was diagnosed with Alzheimer's at the age of 89, I got all the paperwork I would need regarding all these issues. It was very hard to get my mom to sit down at the table and discuss everything and it took several different occasions to actually make it happen. I made sure she understood everything and we filled the paperwork out with her signatures. She told me under no circumstances did she ever want to be put on life support or have a feeding tube. Thankfully, I have it in writing. She is on hospice right now and we also have a DNR (Do Not Resuscitate) order in her apartment.

She verbally told me her wishes but, when I was going through some of her things, I found a 3x5 index card with these words written on it:
"Do FOR me - not TO me."

You and your family will be in my thoughts and prayers - may you and your brother have wisdom to make this difficult decision on your mom's behalf.
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Reply to NobodyGetsIt
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Has your mother expressed to you ever in the past what circumstances she would not want to live under. My family knows that I do not now want any heroic measures, including artificial feedings, but then I am a nurse, and I have seen the outcome. To be frank I have never seen a good outcome. The feedings often cause uncontrollable diarrhea which leads then to ulcerations and breakdown.
Have your doctors made suggestions. You do know, I am certain, that this is just prolonging life a bit until death dos come. You say there is pain. She already apparently has decubiti. Were this my much beloved mother I would recognize that she had lived her life now with nothing ahead but artificial means of keeping her alive, and with nothing ahead but, quite honestly, torment and suffering.
Doctors have come a long way. I would be disturbed if some are suggesting you should go this route.
Ultimately now the decision is in your hands. You must decide, from all you know of your Mom, what is best for HER. Whether she has the tube or she does not, death is coming more and more near. For myself I would have hospice and I would now keep my much loved Mom medicated below any level of suffering, even if that medication hastened her death.
This is in your hands. Only you can make the decision. As I said, whatever way you decide, death will soon come. It is important now, also, that you and your brother decide together what is best, what will cause you the least grief.
I am so sorry you are facing this loss of your much loved Mom.
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Reply to AlvaDeer
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My mother in law with Alzheimer's had started having issues eating and forgot how to drink out of a straw. The decision was made to do a feeding tube. She pulled it out _twice! They decided to not try again. But then she started eating again. Mostly pureed foods and boost or shakes, but her weight stabilized and she is still hanging in there. Shes only 79, she Alzheimer's was early onset. I'm glad she is ok, but it's still a sad situation; she's happy to talk to you when visiting but she doesn't know us anymore, and can get very agitated in the evenings. She was always a very fastidious, fashionable, put together woman, I know she wouldnt want this. Non mobile spending her days In a mobile recliner, wearing depends, in an adult onsie so she doesnnt disrobe, in a nursing home. And now with covid restrictions.....

Ssorry, feeling sad today. My mother who is 10 years older than my mother in law was recently moved to the Memory Care unit at her facility. Watching my mother in law decline makes me fearful for what's in the future for my mom. It's like watching pieces of them die every day.
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Reply to Gracie61
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My mother had Alzheimer's for many years and spent the last four years in a nursing home because she lost the ability to walk. We decided in favor of a feeding tube because she was happy and enjoyed our daily visits (even when she wasn't sure who we were), but she was always convinced she had already eaten even when she had not. Within a week of her getting her feeding tube, her cognitive ability improved simply because of her improved nutrition. Visits became so much happier because no one had to plead with her to eat. She was offered food at every meal, and she would eat from time to time. She never pulled at her tube, but when the nurse would come to give her meds and water through the tube, she would hold it out for them and would be very pleased with their compliments about her helpfulness. She was much more relaxed, and her "sparkle" came back. She lived for her last 3 years with her tube, and even though her mental status continued to predictably decline, the issue of food was removed, and we had good time to enjoy with her.

My mother did not have an Advanced Directive or a DNR. She had told us when she was younger that even though, in theory, she didn't want to live with machines keeping her alive, she wasn't sure how she would feel about it if that time ever came to be a reality. We were guided by her joy at seeing my father every day, her delight at visiting with her grandchildren, her eagerness to participate in activities, and the knowledge that she had not stopped eating because she didn't want to eat but because could not remember that she had not had anything to eat.
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Reply to wjhperson
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I would not do it.
But if it is a temporary thing then I might consider it. But not if this will be what sustains her.
As the body declines and comes to the End of Life it does not need food the way we do when we are healthy. To give food when the body can not process it can lead to problems. There can be blockages, vomiting is a possibility that can lead to aspirating and an aspiration pneumonia.
What would your mom have wanted if you had asked her 10, 20 years ago? Would she have wanted to have a tube inserted that might give her a little longer?
The other problem is with dementia she may very well try to remove any tubes, temporary or permanent. She wold probably do the same with IV's.
I would contact Hospice and allow them to help her to be comfortable.
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Reply to Grandma1954
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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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Reply to lealonnie1
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NobodyGetsIt Aug 15, 2020
Very well said "lealonnie1" - I also agree that these decisions are often based on how the family member(s) feels about letting go of their loved one instead of the suffering the loved one is going through.

When my dad was diagnosed with Stage 4 Pancreatic Cancer surprisingly he was willing to go the chemotherapy route after talking with an Oncologist. Before we left her office, we made his first chemo appointment for the following week. After I went home, I felt horrible about the whole thing. I knew my dad, he was not one to like pain and suffering. I ended up calling my mom that night and told her how I felt. The next day when I went to help take care of him, I told my dad I did not want him to suffer needlessly. Especially with that type of cancer - he would go through all that, plus my 79 year old mom would have to be up with him if he was sick from it only to maybe add a couple weeks to his life. That's when I told him I would call hospice in to evaluate him and to sign up for their services. Out of all the crappy decisions I've made in my life, this one was one I've never, ever regretted.
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