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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I am a speech language pathologist that worked in nursing homes for decades.
Feeding tubes get recommended by professionals because it is their responsibility to help prevent a person from aspirating or being malnourished or dehydrated. Or at least letting family know options. Nursing and physicians and social workers in nursing homes should discuss all this with the family.

Feeding tubes are life-saving for someone to keep them alive while they recover from an accident or a stroke.
If you have the DPOA you make the choice based on what your loved one expressed or wrote in their living will.
You do not have to agree to the recommendations for a feeding tube.
You do not even have to agree to a change in diet texture or thickened liquids. Some things are for comfort measures-each family has to decide what is right for them and their loved one.
I personally would not agree to a feeding tube for myself or a loved one if they had dementia and were no longer eating. I would consider that a sign that their body and brain are shutting down. I would agree to a modified diet and thickened liquids if it is easier and more comfortable for the patient to eat.
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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.
ALs are not equipped for this kind of care. How old is Mom? Please don't consider a feeding tube. My RN daughter has explained that the medical field will allow nature to take its course but once a feeding tube is inserted, it cannot always be removed. When a person is dying the body shuts down. Feeding them does nothing. There bodies don't absorb nutrition any more. Their mind does not tell them they are hungry or thirsty. I like the previous suggestions.
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I truly understand your stress and heartache over this decision! My mother was in an Assisted Living home in Florida . She has had Dementia for many years and was recently put on Final Stage Hospice Dementia Care, I have learned a lot from the Hospice Nurses as they work with and are trained to work with Dementia and Alzheimer people. They explained that anger or withdrawing can be signs of pain that they cant communicate and withdraw because they give up on trying. The Assisted Living home called me and said she was not eating - she would "throw" her food on the floor. They said they could no longer care for her and we would have to move her to a nursing home within the week. I live in South Dakota,,,I flew there to get her, with the stress of not knowing how the move would effect her. When I got there she was in soiled pants and sitting on her couch alone with a plate of food next to her. She was trying to eat it with her hands but got frustrated not being able to put the food in her mouth . The food had fallen from her hand to the floor. She was showing signs of depression, and had withdrawn. I packed her things and flew her on an airplane ( that was an experience lol) and put her in a nursing home close to me. This all just happened in the last week and a half. As soon as we arrived at the nursing home she smiled and said " they are so gentle and nice" Made me think they were mean to her where she was and it broke my heart. Within the first 24 hours, she was smiling, and eating a lot because someone was sitting with her and helping her eat. I know they cant make new friends but they still like being around people! I was always told that moving someone with Dementia was bad for them but sometimes I think if they are moved somewhere that they feel safe and cared about, it is a good decision. Maybe she is pocketing her food to try to eat it later. She might need someone to help her eat at her own pace or maybe it hurts for her to chew and needs soft food. I think they are wanting her on a feeding tube because they don't want to be bothered to deal with her. I would move her asap. They cant communicate to explain what is wrong but if they get withdrawn there is a reason. We have to be patient with them and try things and see what works. I know sometimes it's hard, I just take a minute and think of a good memory of when she took care of me when I was little, the hugs and love I felt from her, then I hug her tell her I love her and start again where we left off or I go home for the day and regroup and go back the next day. We have to take care of ourselves to take care of them and make our time we spend with them good time not stressful time. Let me know how it goes and if you need to vent let me know!!!! lol
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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.
Helpful Answer (9)

Here is my (long winded) experience when a doctor recommended a feeding tube for mom. Mom had just had a bowel resection after diverticulitis rupture. She already had mild dementia and the surgury magnified this tremendously, and she was pulling out her IVs daily. She was also now very weak and it was a huge struggle to get her to eat, which she needed to do to help her huge insision heal. I was there day and night trying to feed her, and we were making a little progress but very slowly. The doctor who did the surgery wanted to insert a feeding tube since progress wasn’t happening fast enough. I thought about it for a day then agreed and she was to have the procedure the following morning. When we got her down to the operating room the next morning, a different gastro doctor stopped me right before she went into the operating room with one question “Does your Mom pull out her IV? If so this could be a death sentence for her. If she pulls this out her body cavity will fill with the food. She will have to wear a huge tight girdle for months that she can’t get free to keep her from pulling it out. If it was my Mom I wouldn’t do it.” He asked to see her food intake chart and told me, “She’s doing good! You’ve got this!” At that point Mom told me “I’m hungry” which I hadn’t heard in 3 weeks, and I cancelled the tube and back to her room we went. The next day they discharged her to rehab where she ate a tuna sandwich upon arrival. I cried.

My point is if your Mom already has dementia, and she is prone to picking or removing scabs, bandaids, IVs etc, make sure her doctor knows this habit. I would try alternative food preparations like ground, puréed, etc before this last ditch effort. If her assisted living does not help to feed residents with meals, she may need to move to NH, where they have aids that actually feed residents that can’t manage it anymore. At Moms NH many people have one-on-one help at mealtime.
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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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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!
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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It's good you are examining things in advance. An informed decision is very important. I think lots of times that family members automatically accept an option without realizing all the information and the reality of it. I'm not sure if those who suggest it include that it's really aimed at those who need nourishment in order to recover from an injury or illness. Studies have been done to see if that it's effective in patients with severe dementia.

Does your mother have an Advanced Medical Directive? Has she ever talked about her feelings on this? Sometimes, that helps in sorting things out.

I would read as much as possible about the studies, reports, opinions from professional organizations, etc. on dementia patients and tube feeding. I was surprised at what I found. It wasn't what I expected. I would ask the medical professionals you are dealing with if they can tell you how much longer your mother would survive with tube feeding and what the risks are. (If she pulls on the tube, how does physical restraint work and would you be comfortable with that?) And compare that with your research.

The Alzheimers Association has an opinion based on their research. I'm sending you that link by PM.
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cetude Sep 2018
You should post the link on here so we all can see it.
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