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She has been going downhill more quickly during the past 3 months. She has been pocketing her food and chewing less and less. We recently found out that we may soon need to make the decision to have a feeding tube put in. They do not deal with feeding tubes in her present facility. We realize that moving her to a different facility at this point will be extremely difficult for her, not to mention dealing with the feeding tube. She is not able to make new friends at this point, and we are concerned with a move. But of course, she needs to be nourished somehow. I am so unsure on what decision we should make. She has no quality-of-life right now, but she is still very aware of people around her. We may have a few months left before making this decision, but I can’t get it off my mind. Any thoughts?

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When I had been Caring for my own Mother Who had been diagnosed with Alzheimer's I did ask that Question one day since I needed to know Moms take on the feeding tube should We be faced with that situation. Wow the answer Mother made to me left me in no doubt...
NO NO LEAVE ME GO QUIETLY INTO THE NIGHT,
WHY PROLONG MY LIFE BEYOND ITS END,
WE MUST GO TO MAKE WAY FOR THE YOUNG,
BECAUSE THE YOUTH MUST HAVE THEIR FLING,
WE HAVE HAD OUR TIME, AND NOW THAT TIME IS THEIRS TO LIVE AND LOVE AND TOIL,
AS WE HAVE DONE.
Mother died as She had Lived with a beautiful smile on Her face.
Mom lived through very hard times and always loved to recall stories of Her Youth and how She loved dancing. Yes
She was a great Character, and at the ripe old age of 87 years Mother was called to God. While I do miss my best Friend, I thank Our Blessed Lady every day for all the wonderful years We had together. Rest in peace.
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I suggest that you look into reishi and skullcap mushrooms as well as Hemp CBD oil as possible cures or reversal of symptoms. search for "cures for dementia/Alzheimers". There are some solutions out there that you can look at in parallel with your tough decisions ahead of you. Blessings and prayers to you both. God will guide you with prayer.
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Wow, I am sorry all the previous answers are so negative. My mom is a fighter and has a feeding tube . She wouldn’t want to give up her
life because she can’t eat a steak. She gets yogurt and fruit shakes, ice cream and soup but it’s not enough nutrition like the liquid hope- an organic tube feed formula. She’s had this tube since 2015 and still is healing. She made the choice to do whatever measures necessary to save her and god blesses her every day. Get the tube and get good food for her tube feed. It heals in a month. Too bad there are only people who have negative thing to say about this.
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Garleani4
you don’t have 4 months to make the decision whether to put a feeding tube into your mom or not! She will most likely die of malnutrition by then! I believe inserting a feeding tube is what I would do. She may not get better mentally but she will not starve to death because of your decision to not put the tube! Besides, only God will call her when it’s her time. In the meantime you help your mom livevas long as possible without making suffer! I’m going through the same thing!
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worriedinCali Sep 2018
she will not die of malnutrition. A feeding tube and food her body cannot digest will cause far more discomfort and suffering than malnutrition.
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Don't do it. It will only prolong her suffering.
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Do u think she would want her life prolonged under these conditions. U know her better than anyone. Have u considered talking to hospice? My 103 year old aunt lives with my husband and I. She has declined rapidly over the last few months. I’m trying very hard to just allow her to be comfortable and not coerce and cajole her into eating, drinking, etc....but is is hard to see them fail daily, as I know it is with you for your mom. Consider just letting her be comfortable in these last days. You are doing all you can. Prayers...
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My prayers are with you and MOM but please enjoy and treasure the time left with MOM. Let her know you're there for her but don't put her body through anymore pain with a feeding tube and try to accept that she's ok
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Like others have said, at this point a feeding tube is prolonging agony. I cared for my mom 24/7 until she passed in April. I held her hand the last 7 days, when she could no longer swallow. I was holding her hand as she took her last breath. It was a very sweet time... Peaceful.

Feeding tubes cause pain, swelling, etc. When the body and mind are shooting down and ready to go, it is time to help your loved one pass. Tell them you love them, and that it is okay to let go. I told my mom she would be greeted on the other side. That she was a good person and always did her best. That she would always be with me in my heart.

Talk to your loved one, play music, sing, tell sweet stories, hold hands, ... Just love them as they pass from this life.
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When my dad went into his final decline it was quite rapid. He was eating by himself then one day wasn’t very hungry and that was it for him eating. The aides didn’t push him to eat or feed him. I would never have suggested a feeding tube. Dementia is a cruel disease every one progresses at their own rate. I would recommend calling hospice.
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I Cared for my Mother 24/7 Who had alzheimers in Moms own home for three years until She died at age 87 years. One day I asked Mom this Question.....what if I said when You grow into old age and you can not eat solid food, would You opt for a feeding tube to be inserted ? Moms answer left me in no doubt and What a beautiful answer Mother gave me.
NO PLEASE NO, LET ME GO QUIETLY INTO THE NIGHT
AND DO NOT PROLONG MY AGONY ANY LONGER,
WE (Mothers Generation) MUST GO TO MAKE WAY FOR THE YOUNG BECAUSE THE YOUTH MUST HAVE THEIR FLING, WE HAVE HAD OUR TIME AND NOW THE TIME IS THEIRS TO LIVE AND LOVE AND TOIL AS WE HAVE DONE.
I remember looking at Mother as I uttered wow, and She replied "I AM NOT GOING TO LIVE FOREVER.
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No feeding tube. Call hospice. Be with and take in every bit of your mom. It sounds like getting close to end.
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I remember when my mother died, in the weeks before her death she didn’t want to eat more than a couple of bites. She would drink some, I believe it just required too much energy for her tired body. I currently am my fathers caretaker, he has Alzheimer’s. After watching my mother die and knowing what she went through and how she felt after eating just one bite of something I have decided when dad gets to the point where he really is no longer eating, there won’t be a feeding tube. It has been a hard decision and all siblings agree that we shouldn’t do it just to feel better about our efforts to keep him going. Alzheimer’s patients also will pull their tubes out, I couldn’t put him through having to get it reinserted if he did this.
Ask yourself if you are considering doing it for her or you. When you can answer this honestly you will know what your decision is.
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I once heard a hospice director say it this way, "people don't die because they stop eating. They stop eating because they are dying."
I have been a nurse for 25 years, much of it in long term care. I believe feeding tubes are helpful for short term use while someone is recovering from an injury or illness, but should not be used for long term nutrition. Studies have shown that they will only help someone to live longer for a few short months(2 - 3). It doesn't seem to me like putting them through the trauma of surgery and having to adjust to the tube is worth it. Not to mention that people with dementia often pull them out.
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Wondergirl Sep 2018
Thank you for your frank answer.... it's only prolonging the dying process... and only for the living at this point.   Hugs to you.
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I wouldn't. As a nurse in the hospital told me when I was dealing with my 90 year old mother...Don't get on the medical merry-go-round. If she eats, she eats. Don't prolong the misery.
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Hi Garlean. Her nutritional needs are your first priority. The social worker at her present facility should be making the arrangements to place her appropriately. You shouldn't have the total burden. Also you need assurance & clarity about what is happening medically. She needs hospitalization right now. From there she could be adequately placed. She needs to eat. Don't let her starve and get dehydrated where she's at. Get her into the hospital now.!!! They are skilled with the feeding tubes. From the hospital can she can be placed into the right facility. What hapoened to cause her to stop eating?
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angelaK Sep 2018
DEMENTIA many times is what causes them to stop eating...its progression of the disease. They stop being hungry...refuse food and drink and in the very end have a hard time swallowing.This is natural.It is sad.It is hard to watch but it is a natural progression of the disease.You do all you can but in the end its not worth infections,them pulling out the tube and the possibility it will not help anyways because they stop being able to digest food.I wish there was a cure for this aweful disease.I wish they all could take a pill and magically be better.In my case she is 93,,,has dementia and cancer.Do we want her to suffer more so the family can feel better?ask yourself this.
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I ll tell you my recent experience and my conclusion out of it. Mom, 90, was admitted to the hospital because of aspiration pneumonia. She has diverticulitis in hes esophagus and should be on a puree foods for years, but she is very stubborn and in dementia, so she refused to listen to me and finally got herself to aspiration pneumonia. She was in a hospital for 14 days, where she failed two times swallow test, so they did put a feeding tube. My doctor was saying to me do not do this as she knew that dementia patients will pull it out. And yes, thats happened, she did pull it out two times. But then slowly her ability to swallow came back and now after 3 months she is eating puree food in rehab with great appetite. But she despite her age and dementia was not ready to go, she still as I can see enjoying the life (although I think its not a full life but it is what it is for her). If I would see that she does not want to live anymore, then I will say, yes, that doctor was right and feeding tube will be no good. But in her case it gave her chance to survive during that unable to swallow period. So I think your decision should be mainly on the answer, do she want to live or not?
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Cinderella5001 Sep 2018
Hi, sorry for your loss. I agree with you that you have to find some way of knowing if your loved one still wants to live. My mom was hospitalized several times with UTIs and other things. She always told me that she wanted to live. And I always advocated for her according to her wishes. The last time she was hospitalized, it was different. She was not talking. Her BP was very low. She could not eat. The MD never told me but, she was dying. As you probably know, it is horribly painful for the "caregiving family member". My mother passed quietly in the nursing home while she was under hospice care. Every situation is different and we all do the best we can.
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My Mom had documented specific instructions that she was never to be fed and never have a feeding tube if she lost her mental facilities. She wrote that she would consider being spoon fed to be battery. We gradually did feed her more and more as she forgot how and she didn’t notice. Once she was in a facility I explained that my Mom specifically did not want to be fed. It didn’t work that way there! Caregivers would reach right over me and feed her at meals so I did the same. Eventually there is no way you can feed a loved one when they stop eating on their own. I know that I would not a feeding tube if I was no longer able to care for myself. Prayers for you and your Mom.
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My friend, Beth, for whom I was her DPOA, had filled out end-of-life-care forms when I was given this responsibility. When she became incontinent and started to wander, I got her and her husband into a memory care apartment. She had been diagnosed with frontal temporal dementia and it was progressing rapidly. First she needed a wheel chair. Then she needed to be fed because she could no longer feed herself. Then she could not swallow. Her instructions for end of life care were specific. If there is no chance of improvement, no heroic measures were to be taken. She was in hospice care at this point and well cared for, but lived only another week once she could not swallow. Her mind was shutting down. I am not sure what stage of dementia your mom is in, but if she is near the end, the feeding tube would be pointless, in my opinion. Just love her as much as you can and let her know you do.
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When our bodies begin to shut down, we stop eating. This is not a temporary state that can be recovered from. A feeding tube is not warranted.
The nourishment she needs now is love and kindness from people who care about her in a familiar place where she feels comfortable and at peace.
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I am dealing with the same situation except my mom is in the hospice program at home. She recently came out of the hospital due a severe urinary track infection. Ever since her discharge, she is swallowing solids. She has lost a tremendous amount of weight in a month and a half! She’s not getting enough nutrients! I decided to insert a feeding tube in her stomach. It’s the only solution at this point. I weighed the pros and cons, and that’s what I’m going to do. It’s a very short procedure and minimal invasive. It maybe uncomfortable at first but I’m not going to watch my mom starve to death in front of my eyes!
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Arleeda Sep 2018
Liliana, it is difficult to watch a loved one slowly starve to death, but if there is no hope of a meaningful life, it may be the best course. Years ago when my stepfather's daughter (after my mom had died) had a gastric feeding tube inserted in her father after a stroke he lived 15 months. He could not talk or move his arms and legs, and over a few weeks I saw the wild look of insanity appear in his eyes. My husband and I made a pact (and reaffirmed in advance directives) that we did NOT want gastric feeding tube. Years later when my husband had a stroke that left him completely paralyzed on one side and without central vision I had to honor his wishes. It was very hard, but he seemed at peace and did not complain of anything but a dry mouth, which attendants cared for several times a day (he was in a free standing hospice). And when the same thing happened to my stepsister's husband, she remembered her father and did NOT have feeding tube for her husband. I have made it quite clear to my children that I do not want a gastric feeding tube and if I quit eating don't force me. There are worse things than dying (and if you are religious you are looking forward to a wonderful hereafter, aren't you?) Gastric feeding tubes are one of them.
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During my Fathers transfer to rehab from Hospital stay with UTI at 97 yrs old he was permanently placed by me his poa and daughter to NH...well I visited everyday to see the activity with my blind,some dementia, father go downhill after
three mos, whilst getting apprvd for Medicaid..due to the fact that he had ten thousand in his bk account after putting the money in a Funeral trust done, anyway he began having swallow problems, the food was very often cold and unchewable due to the slowness of the atttendants, ...he was not being hand fed one morning with an attendant feeding 8 people who needed to be hand fed..
he was of course placed in a wheel chair where he slept..ok..but I never saw the nurses giving drinks,hydrating,at the station where they are placed and I started
by buying a blender and whipping him up smoothies in his room everyday with yogurt and fresh fruits...why do the nursing homes not do smoothies for these people that do not finnish their cold food...……….its so simple..and nutricious..whip up a batch and give it to the seniors...with of course anything fresh kale,spinich,
watermenlon andthing that can be purchased that day by the kitchen staff..I did this because there was a Walmart,food loin next door..so he finally got sicker..i suspect with a UTI...there were lapses of unattentivness of the staff..I caught them...Dad could not see his water..anyhow I finally was aware that one had to hire an attendant to make sure the attendants are doing their job..low staff on weekends....and again pay out of pocket for the personal attendants..thankgod I was going every day for five mos until Dad was transferredwithr toxic shock from a UTI...horror, to the hospital where he died peacefully in a much better environment with medical supervision ten days later.
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NO! NO!
When a person is declining the body has less and less use for food. A bit of food to keep the heart and the brain functioning. The amount of food that is processed through digestion is minimal. If you give her more food than her body can digest it will remain in the stomach and can cause pain, possible infection and possible impaction. (This may require a surgical remedy)
WE are the ones that are uncomfortable with seeing our loved ones not eating.
WE feel the hunger if we have not eaten.
We are brought up with the thought that food is love, food will make us better, food will soothe us, food is memories.
Food is all that but it is a source of energy and when your body no longer needs that energy the food is not needed.

There are other problems with feeding tubes and dementia. If this will be a permanent placement then she will have to have an anesthetic and a "minor" surgical procedure. The problem with this is that anesthesia can be problematic for people with dementia and she will be uncomfortable with the incision after the procedure.
Then there is the possibility that she will keep trying to remove it. (happens often with dementia patients)
If this will be a "ng" tube there is the discomfort with that as well as the process of inserting it.

Think back to what your Mom was like 20 years ago, 30 years ago....did she ever have a discussion with you about what her wishes would be?
Would she have wanted a feeding tube given the circumstances she is in now.
And as long as we are on the subject...have YOU made your wishes known to your loved ones? Might be a good topic to bring up ...maybe at dinner one evening.
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richamj Sep 2018
Very good response! I wonder what happened in our society that we can't let go of people? Death is a natural part of life that we have made to be unnatural due to the heroic measures of modern medicine. And boy, the judgement we unleash on people for "allowing" someone to die! It's something that will inevitably happen to all of us--just like being born. The difference is, we don't get to be a part of planning our births, and we do not remember. We do get to experience our own deaths, and have (hopefully) many years to plan for it, so why not try to plan for it to be a good and peaceful one if at all possible?

Modern medicine allows us to keep people alive, but at what cost to quality of life? Managing a feeding tube is difficult enough with someone who has their full faculties; with dementia, the procedure itself can be risky and the day-to-day management incredibly difficult.

What quality of life would a feeding tube be adding?

I think if the OP's mother has advanced directives that specify her wishes, those should be followed. Unfortunately, many people did not take the step of specifying their wishes, so the POA or family member has to guess. Let's all do our loved ones a favor and get our wishes in writing!
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Does your mother have a DNR? If so, that tells you that she does not want any extraordinary means to prolong her life. I would be very concerned about her ability to tolerate a feeding tube. Honor your mother by following HER wishes and not yours. If you need to, get together with siblings and make a unified decisions.
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This is one of the toughest décisions you will ever have to make for your loved one. Do you know what your mother's wishes are? My parents always made it very clear that they did not want to have a feeding tube. That made it easier for me to make that décision. Nevertheless, it is a painful décision. If it helps you, remember that when we come into the world, we are ready and capable of eating. My personal belief is that when we are no longer able to chew or swallow, it is the body's signal that we are préparing to leave this life. Remember that if you allow a feeling tube to be installed, you may later have to request that it be removed. I chose to allow my mother to pass by not prolonging her life when I knew there was no chance or hope of recovery. She had lost all quality of life. She could not do anything for herself. She was bedridden. She was not ambulatory. She could not even reposition herself in bed. She required 24/7 care. I consulted with our family members, her doctor, our religious advisor, and with nursing staff. I was sure to give her all the required médical care. But, after I was told that she could not swallow properly, I felt that the time had come. My mother was transferred from the hospital back to the nursing home under hospice care. She passed quietly in less than 12 hours. It was still shocking, and horribly painful for me. I don't know if I'll ever be "over it" but I do have comfort in knowing that my mother is no longer sufferring......I believe that she is at peace. And I know that she has escaped the routines of the nursing home. You will have to search your heart and use all available information and advice to détermine what is best for you and your family. I hope my words are helpful to you.
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I am so sorry you are facing such a difficult choice. I do understand, as my family and I faced the same question ten years ago. We decided to give my father a feeding tube, and I spent months regretting it before we removed it and let him die a peaceful, dignified death. Does she have a living will which would give you some guidance? Did she ever tell you she would not want to live under such circumstances? What quality of life are you willing to accept for her? I firmly believe that losing interest in food, especially in the elderly, is the body's way of saying it's "done" with this life. So no, I'm not sure "she needs to be nourished somehow." At some point we have to accept that our loved one is not going to get better but instead is only going to get worse. Will a feeding tube improve her quality of life or only prolong her suffering? The move itself will be so traumatic she will probably descend to a lower level of dementia and a higher level of anxiety. I have always regretted that our love for our father caused us to make a decision that brought us more comfort than it did him. If she were in her right mind, what would your mother want for herself? Would she want the life she will be facing for months (years?). Have you checked to see if she's hospice eligible? It sounds like she might be. Once we took my father off of the feeding tube, hospice guided us compassionately through the process of standing back and letting him go. Very hard, but there are no good choices here.
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If you can do her feedings 3 times a day and get her a mickey tube. It’s flush to the skin over her stomach. The external line fits in the holder by turning it to click and lock. It’s easy. My mom has a tube but not that one. Hers hangs out. I don’t have to worry about her pulling it out. She understands. The biggest challenge was getting nutritional food for her. My mom only ate organic food before she had her strokes. I found “Liquid hope”online from Functional Formularies and it’s expensive but it’s tolerated and her bowel movements are normal. With liquid food, eternal food, it’s very hard to get a formed bowel movement. Also her water intake is another concern (dehydration). I take care of mom at home . I do all the feedings and give comfort food, like yogurt and pudding, daily frui shakes thru a straw. Her swallowing is the problem and that’s another issue. With a tube you need to be elevated somewhat so your food doesn’t come back up and get into your lungs. So there is a lot to consider.
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There is a lot of evidence-based research about feeding tubes and many show they do not prolong life. Feeding tubes have complications--they can STILL aspirate (vomit) and tube feed goes back down the wrong way. Remember they create an open area which can get infected. Not to forget they can pull them out and will require a trip to the Emergency Room to reinsert. If a doctor does not put it back in within 24 hours another surgery is required. My mom has end-stage Alzheimer's. Although cumbersome she still eats and drinks--but it takes over an hour to feed her and another half hour to brush her teeth. She lives entirely on baked beans and nutritional supplement. Her labs are great. The beans are soft and easy to chew, and full of fiber. I discovered she chokes a lot less -- if at all, if I let her eat while sitting on her favorite easy-chair. AND I put a small bar of travel soap between her clavicles (kept in its wrapper and clipped on like a necklace). I know it sounds strange but that small bar of soap reminds her to swallow. I'm telling you it works for her. If I don't have that small bar of soap resting on the bottom of her throat area she forgets how to swallow and will start pocketing. A small bar of soap will not cost you much. It still takes time but she does a lot better and stops pocketing. All I can say is that small bar of soap has worked wonders for her.

Of course every Alzheimer's is different and the decision is ultimately yours. Go on Google scholar (https://scholar.google.com/) and put in key words like peg tube elderly and see for yourself. Overall evidence-based research says advanced ages with feeding tubes do not improve quality of life or lifespan.

If she is in assisted living and is getting worse, she most likely will need permanent nursing home placement. Assisted living means they can still feed and toilet themselves.
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We reached that point with my both my Mom, then Dad. They could no longer swallow, and had suffered bouts of pneumonia, from aspirating food. We decided against it the feeding tube, both times. To preface, I'm a nurse, and have taken care of folks with gastric tubes many, many times. I feel, that G-Tubes are entirely appropriate for in some instances and not in others. In my mind the decision should be based on a few factors. First: will the patient get better? Is this a temporary measure, that will tide them over for weeks, or months? Then ,yes, of course. Or is this a situation where the patient will still have a substantial quality of life, and this is just a way to get them the nurtition they need to live, even if it's permanent. If yes, then yes of course. But if getting better, is not going to happen, and if quality of life is a thing of the past? Why do this to them. If they are no longer awake, aware, nor able to enjoy the life they are living? Then why would you want to prolong that. And if added to not aware, they are in pain, suffering, and that is not going to ever stop, then definitely not. And that was the case for both my parents. We got to the point, that Mom, was totally unaware of anything but her own misery. And Dad, reached the point of only rare glimmers of understanding, but mostly he lay there. And the glimmers may have only been my own wishful thinking. But I knew, that forcing him to continue on for several more months in his misery, was something I could not do to him. ..But one more question, Did your parent ever voice their wishes? If there's a DNR form, it may have directions on it, that will make the decison for you.
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My dad was in an Alzheimer’s unit for 19 months. During that time he went from solid food to puréed food to liquid diet. Towards the end a feed tube was offered and as a family we decided not to proceed with having one inserted. The last two to three weeks he barely ate at all. It’s a difficult progression of a horrible disease, but inserting a tube would have only prolonged the inevitable. Hospice was an extremely valuable resource for us the last six months of his life. They can help provide information to make decisions like this when the time comes.
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Feeding tubes, especially PEG, should be a last resort, after everything else has been exhausted. Some may not know, but a feeding tube, especially PEG, could raise the risk of getting Sepsis, at the insertion site.

Besides, it is another way for the GI doc and/or Hospital to make some money.
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