Mom is in an assisted living facility suffering with progressive dementia. We need to decide about inserting a feeding tube. Any thoughts?

Is it possible that she may have a bad tooth or a gum infection? Pocketing food is a common behavior in those with dementia. But refusing to chew may be an indicator that she’s got mouth pain.

They told me that they would put a feeding tube in my mother too. I explained this to her when she was lucid for a moment and she understood. It helped for a while, but eventually she had to be on a puréed diet.

Have you considered Hospice? If you have not had a Care Conference in a while, it may be time to call one.

She needs to be seen by a speech and language pathologist to evaluate why she is having trouble eating, she may do fine with moist minced or pureed foods or as Ahmijoy said she could have other oral problems that are contributing to this. I realize that this AL has been her home and a move would be difficult but I question whether she is getting an appropriate level of care in this AL facility, and I also question the nuclear recommendation of a feeding tube when they haven't even moved her to a modified diet (or I assume not since you mention chewing). Please do some reading (on this forum and on the web) about feeding tubes in dementia before you have to make this choice.

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.

I'm surprised they don't have her on a soft food or liquid diet to start off with before suggesting a feeding tube.A feeding tube can be tricky and cause infection.Maybe try a liquid diet first. Ensure,Soups ,mashed potatoes,purees are good ,safe choices. If she has trouble swallowing she may need her fluids thickened. In the end stages they have decreased appetite and do not eat much and I constant have to offer fluids creatively or it doesn't get in. I would try whatever possible before the feeding tube. I knowany will judge me for saying this but there are stages and a natural process as someone reaches their last days. You mentioned she has no quality of life.If she can still swallow try the liquids..if she refuses or doesn't want to eat this could be her way of saying she had enough.Its still her life.You can only try to encourage her but a feeding tube is forcing someone to be fed and kept alive when their body is showing that it's time to let go.Sorry,I know that's blunt.

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.

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.

Has she had a swallow test done at the hospital, called a video fluoroscopy? This is done to see exactly what she can do with food. My mother did have a feeding tube following a stroke, put in when there was much hope of recovery. She could eat some by mouth for a while, then it went to puréed foods only, then after some trouble we had the swallow test done and she had no more food by mouth ever. When it became clear she was dying the feeding was discontinued altogether and she only was given water until she passed away. If there had been dementia or some question of her not tolerating the tube we most likely wouldn’t have done it at all. But I’d have the test done to help make a final decision. Blessings as you walk this road, it’s not easy I know

Please keep in mind that there are different types of feeding tubes -- a nasogastric (NG) tube vs. a PEG tube. NG tube enables constant feeding from a bag that is hung (much like an IV bag). This tube can be placed (and removed) by a registered nurse. It is inserted through the nostril and runs down the esophagus to the stomach. This procedure is not fun (usually induces gagging as the tube is going in or being pulled out) but generally is well tolerated. Often used for people who have been diagnosed with swallowing difficulties as a temporary measure while they undergo therapy to improve their swallowing abilities.

A PEG tube is placed by a surgeon through the abdominal wall directly into the stomach and allows periodic feeding by "pushing" the food (a pre=mixed liquified formula) through the tube with a syringe. Receiving food this way can be painful for the patient. This is a permanent solution for patients who can not get adequate nutrition by mouth.

One of my grandmothers had an NG tube while she underwent P/T for swallowing difficulties. The tube was removed when her swallowing improved following therapy. This grandmother did not have dementia.

My other grandmother had Alzheimer's and had a PEG tube inserted in the hope that getting proper nutrition would improve her mental status. It didn't help her mental status, though she was tube fed for several months (possibly a year or so.) Her kids had to make the decision to discontinue tube feeding. At that point they moved her from NH to the home of one of her sons, where she died about a week later.

You need to know what kind of a feeding tube the facility is suggesting and WHY. I would also seriously consider your statement that she "has no quality of life" -- do you really want to prolong that?

Also you state that you "may have a few months left before making this decision" -- I'd advise you to focus on your present situation, enjoy spending time with her while she is still very aware of the people around her, do your research into the "what" and "why" of the feeding tube suggestion, but don't worry about it until you MUST decide. Lots of things can happen while an elderly loved one finishes out life's journey, and you may be spending your energy worrying about a situation that won't actually materialize.

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!

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.

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.

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.

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?

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?

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.

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.

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.

No feeding tube. Call hospice. Be with and take in every bit of your mom. It sounds like getting close to end.