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We are supplementing her diet with ensure plus. We are cutting up her food and feeding her small bites of favorites like salzbury steak and mac n cheese. We give her sweet things like apple sauce and strawberry flavored electrolytes. As well as cookies and desserts. We have started feeding her 5 small meals each day and two snacks. She sees her doctor about every 12 weeks.



When is it time for us to start a feeding tube? What percent of weight loss is an indication of needing a feeding tube. Her advance directive indicates no aggressive means of life support. Does this include feeding tubes?

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If your mother has a directive of no aggressive feeding, a feeding tube would be considered aggressive. You do not say how old your mother is or what her present condition is. Is she terminally I'll? If you are managing to get her to est those small meals and snacks you are doing good. She probably loves the sweets but include some protein in her meals, eggs, meat are good if she will eat them. Ensure and Boost both have protein and also high protein drinks. Please beware that the protein can make her constipated and she will need fiber in her diet also as well as good hydration. If she is seeing a doctor every 12 weeks you should be asking the doctor at what weight your mother should be or what would be considered critical, but also consider your mother's wishes not to have invasive measures. Good luck to you and your family.
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This happened with my mom. We kept coaxing and praising.

Mom became difficult- spitting out food and fighting. We tried 1 small bite at a time (Instead of many small meals). The whole day and evening was small bites, continuous attempts, fighting, spitting. Many different foods, textures, temperatures. I felt like I would surely lose it.

This process lasted 3 or four days. It was very frustrating snd seemed hopeless.

Then, out of the blue, she started eating again. Loving food and life. It was a special miracle that gave us more time together.

I’m so sorry you are going through this and hope you have good results. Keep trying. Hang in there.

She is so lucky to have you.
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Barb1346: I do not profess to be medical professional. However, Imho, it may be deemed cruel to extend the life of someone who suffers from Alzheimer's by having a feeding tube inserted. Your mother already has in place an advanced directive indicating no aggressive means of life support - including feeding tube, of course. This poor lady is trying to ingest food stuffs, but is unable to do so as she is quite ill.
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My friend's mother had rheumatoid arthritis which in her case caused pain and stiffness in the jaw. It interfered with her ability to eat and speak. Chewing was painful. If not already ruled out it may be worth checking on it with her doctor. If it turns out that she has RA maybe she can be treated for the pain. Just a thought.
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MicheleDL Sep 2022
I have RA but no symptoms, any longer.
Everyone is different but may I suggest your friend Google Roadback Foundation this was my first step back from h*ll.
The second thing was to cease eating vegetables in the Nightshade family.
Very best of luck.
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My Dad had no appetite the last year of his life. And my mother had a huge appetite always. She constantly harassed my dad to eat even when he wanted nothing. To get her to shut up he would eat. He ended up with aspiration pneumonia twice. Let her eat as little as she wants.
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My mom was given Boost when she was at a local nursing home for hip surgery rehab, but didn't like it. When she came home, I started giving her Carnation Instant Breakfast (Chocolate) at dinner time, and that's the way it was until she died. Her Dr. thought it was a great idea. As mom did not take pills well, I would crush them and put them in chocolate pudding, which worked very well.

The fact you are asking a question regarding the use of a feeding tube indicates you never discussed this with your mom. As my mom's son and full-time caregiver for a number of years, I made it a point to speak with her about important issues like this (In her case, she made it clear: no heroic measures, including feeding tubes). As I noted in another post, at the end of each year, mom and I would go over her important documents: Will, POA, Health Care Proxy, Life Insurance, and Obituary, to discuss any changes (I was her POA, Health Care Proxy, and Executor). I would then prepare a sheet with the date we did so, and we both would sign it. The last time was right after Christmas 2021.

She passed away in January at age 93. I had brought her to the hospital the day before because she was acting out of the ordinary. Staff diagnosed a UTI and decided to keep her overnight. Early the next morning, I got a call stating her condition had suddenly deteriorated. I arrived to find her unconscious and on oxygen. I was in shock, as I truly expected I would be bringing her home that day. I quickly realized that was not going to happen, and when the ER Dr. came in to discuss the situation, I was ready to respond. She finished the journey to the sunset of her life at peace, and I was so glad I was there with her. It was also easier as I knew exactly what she wanted for her funeral, and I had all the required papers ready when it came time to close the estate.

It is crucial for caregivers to discuss end of life matters with their loved ones, providing piece of mind for both parties.
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AlvaDeer Sep 2022
Fabulous advice for us all, and how we learn from others here on the Forum. I, as a retired RN, already have it written into my advance directive that I will not accept IV feedings (TPN or Total Parenteral Nutrition) nor feedings by tube or peg. Our OP doesn't list age here. It is dreadful to place a tube, have it cause diarrhea at the least and infection and sepsis at the worst, have a patient restrainted to prevent pulling out thru the throat and consequent feeding into lung causing aspiration pneumonia and drowning or pulling the sutures out of the peg tube in the abdomen. I think that our OP should discuss end of life issues with her Mom's MD. And her posting warns all of those of us who have no made our desires clear to our families.
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I have an advance directive and it means NO feeding tubes !!!

Was that what she meant when she made hers ?

i would suggest giving her only what she enjoys if she will eat them.

this sounds weird but give her whatever would give her … and you … good memories.
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PLEASE do not do a feeding tube.
When the body begins to shut down the need for food and eventually fluids diminishes then is gone.
To place a feeding tube when the body is not going to process the food or calories can cause many problems.
Contact the Hospice of your choice they will help mom and you through this difficult time. The goal of Hospice is to keep the patient comfortable and pain free.
Feeding tubes are an aggressive means of support.
I know this is difficult to watch.
Please know that your mom does not feel hunger as you or I would.
Not eating does not cause her pain or discomfort. (to feed her might)
She should be fed only what she willingly will accept.
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Follow her wishes as outlined in her advance directive.............let go and let her be the captain of her own ship. You can let her doctor know what is going on if he/she doesn't already know; unless Mom set you up to receive information from her doctor, you will be kept out of the equation (HIPPA), but doctors are free to accept information. Doing nothing is an option, too.
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Hi Barb,

Your mother's doctor can send a swallow specialist out to the house and give suggestions.
We found the swallow specialist very, very helpful.

My mother is now at late stage alzheimers. We are making her pureed foods.

My ex boyfriend's Dad had alzheimers at a very young age. He was in his 60's and could not talk, walk, or stand. When he would not swallow the family put him on feeding tubes. I had no idea what that meant until he was hooked up. Basically the patient is in bed and tethered to pump that pumps nutrition into the body. The whole process takes 12 hours over night each night. I have no idea
why the family subjected their Dad and husband to this.
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Feeding tubes are an aggressive means of life support. Tube feeds also are notorious for causing diarrhea. Diarrhea causes electrolyte imbalances. Electrolyte imbalances cause hospitalizations. Do you see where I'm going with this?
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Talk to her doctor about this, and ask him to refer you to a nutritionist who knows about elder care. It's not uncommon for people to change their eating habits as they age. My mother had to switch to soft foods (like baby food consistency), and some other people at her facility had to drink thickened liquids because they had trouble swallowing. Try nutritious foods like scrambled eggs, hot cereals like Farina, flavored yogurts, smoothies, protein drinks, mashed sweet potatoes, etc. And supplement with Ensure or Boost. Feeding tubes would be considered an aggressive measure. Hydrating is also important, and hopefully she can still drink fluids. Speak to her doctor about when she might be better off with hospice care so that you'll know what to look for.
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U didn’t no no one knows everything until they communicate. In which u did. I commend u. It sounds like u guys r doing a good job. Y does she have to go to hospice she should stay home with the family. It’s trues our bodies change as we gets older. Do if she’s getting healthy drinks natural fruits veggie drinks , water and maybe fish little chicken once or twice a week. Did u know it’s not always ppl need to take meds so fits harms more than helps. Meds mess up ur kidneys. Also, my doctors tell me tums, over the counter pills like Advil does the same harms the stomach so imagine what other pills does. Getting old is getting old. Adding fuel to the fire makes it worse. God is Blessing mom she’s doing pretty good for being in her 90’s try my way with the healthy liquids, checking out Dr. Neal Barnard, Dr. Michael Klaper and Dr. Charles Stanley from intouch.org . God Bless!
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Agree no need for feeding tubes. Like I mentioned healthy drinks use a long straw. Y would she need a feed tube. Never
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Think about what her very favorite foods from the past have been, and see if it's possible to give her an appropriate texurized version of it to her.
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Absolutely, exercise must move our bodies walk 15/30 minutes a day to start. If she can’t go out walk in place, stretching, light weights
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Sorry to say those r not healthy foods at this stage in the game. Maybe as a treat. Listen to Dr. Neal Barnard and Dr. Michael Klaper on plant base foods. God says in the Bible we all should be eating fruits, veggies and grains. Check them out on YouTube. U can purchase a good juicer or blender make fruit drinks, veggie drinks , buy books or look up healthy recipes online. We don’t drink enough water and get enough fiber. I bet after a mth or so ur mom would feel much much better. Plz let me know. Most of all view intouch.org. God Bless!
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Deb555 Sep 2022
The foods you are recommending are not calorically dense. The weight loss will continue on the vegetarian smoothie items.
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Whoa, God bless you, but your way ahead of yourself with feeding tubes. 🙃

my Mrs. Had this issue too. She chose not to starve herself to death.

I don’t know how much activity your mom gets but I know my Mrs. was transferred from her bed to the living room chair to watch TV all day basically, and then transferred back to bed. Not much activity. Not much appetite and no need for normal amounts of food. so in this sense I compassionately say - relax.

I would do things like put cream cheese in the mashed potatoes. Or make an omelette with her favorite jelly and cream cheese. & Lots of ice cream. Fortunately she didn’t have a lot of dietary restrictions I was lucky. Her husband did. But we worked around it.

Good luck dear and no feeding tubes yet!
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Feeding tubes ARE extraordinary measures. Loss of interest in food is a normal part of the dying process; our organs will slowly break down, making digestion more problematic and outright painful in some cases.

I urge you to educate yourselves on the dying process. A good source of information is this easy-to-read book:
https://www.amazon.com/Dying-Natural-Passage-Denys-Cope/dp/0978750659

Let your mother indicate when and how much she wants to eat. Never force food on her.
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my wife does not eat very much there was one instance where she did not eat for 4 days and I took her to the doctor. Some days are better than others. When she does eat I keep feeding her until she won’t eat anything more. I have found it is a mental thing and even with food in front of her she will forget to eat it so I keep reminding her until she finishes. Fortunately tests show she is still doing ok and not missing any nutrients.
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Lizhappens Sep 2022
Exactly. When it was time to feed my Mrs., I just settled in and put on our favorite game shows and got ready to patiently help her eat one bite at a time, at her pace. Sometimes it was extremely annoying, and yeah she refused to eat too, but she maintain a healthy 140 pounds, give or take 10, all the 7 years i cared for her.

to be honest, part of the problem is for us to stop thinking they need three full meals a day with so very little activity. You’re gonna cause an overweight problem and then that’s gonna be hell on your body to care for them. Maintain. 😊
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No feeding tube. Offer Boost drinks.
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Boost High Calorie.
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If your mother has come to the time of not eating, you should not introduce a feeding tube. A feeding tube might be appropriate if someone is suffering from a recoverable illness. It is not appropriate for someone who is dying.
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I suggest you request your mother's physician to give an order for hospice evaluation for hospice appropriateness now. You can even choose the hospice you want or have more than one hospice come out to share about their services with your family . When you know which hospice you want to have help you with your mother, they will admit her to their care. Hospice will provide you and the family care support towards improved EOL understanding as well as caring for your mother. Not eating and decreased interest in food is part of the normal body preparation toward EOL. THE FAMILY ANXIETY about their loved one not eating is also normal. Also, as we all age, we require less food intake. The right hospice support in your home with your mother can improve the daily quality of life for all in many ways with the interdisciplinary team care which includes education and care for the family. You loving your mother so much, I am sure that you do not want to unknowingly project your anxiety onto her ; simply respect what she is telling you when she is not interested in food.

One of the hardest hurdles for families to overcome is accepting that their loved one no longer wants nor indeed needs food and eating.
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I think tube feeding is part of life support but it's a good idea to check with her doctor. Your mother's organs might be shutting down, so force-feeding is not a good option.
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This was in a pamphlet I received from Hospice. " Please remember this - your loved one is not dying because he or she is not eating. They are not eating because they are dying.
Reading this was very helpful. My husband had become lethargic and wouldn't eat. We had been trying to force him to eat and he ended up with pneumonia (probably due to aspiration). We now believe he was lethargic due to meds building up in his body. We are lucky because he has bounced back from it and is back to his "normal". If he gets to the point again where he doesn't want to eat, we will not force him unless there is a medical reason for him not eating.
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I agree No feeding tube. Most of the time, it is suggested to enrich the pockets of the hospital and GI doc. Use your best judgment on how you want to proceed.
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YES, 'no aggressive means of life support' DOES include feeding tubes! Putting an Alzheimer's patient on a feeding tube is cruel in my opinion. Why would you want to extend the pain and suffering of this poor soul?? Allow her to wind down her life by cutting down on her food intake and call in hospice now instead of forcing her to eat more, that's my suggestion. Alzheimer's is a terminal condition that will eventually take her life, so please honor her wishes for end of life care.

Call your mom's doctor for a hospice referral and to ask his/her opinion if now is the right time for such an evaluation. Hospice will bring in a hospital bed for mom, all the supplies she needs, and it's all billed to Medicare. You'll get help bathing her and she'll get medication to keep her comfortable as well. I had hospice services for both of my parents and they were phenomenal. Neither parent had any pain or suffering at the end of their lives, and for that I am forever grateful.

This is a difficult time for you as well, and my heart goes out to you. I watched my own mother decline with dementia for years; the last year was very difficult. She too dramatically cut down her food consumption and went from a very hearty eater to someone who pushed the food around on her plate. She even turned down cookies which was a shocking thing to witness. I watched her go from a vibrant, full of piss-and-vinegar woman to a mere ghost of who she once was. I was grateful when God called her Home, truthfully. It was finally the end of her misery and mine too, watching her decline on a daily basis. Please be sure to look after yourself during this stressful time, too. Wishing you the best of luck.
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I just want to share this article with you

Feeding Tubes for People with Alzheimer’s
When you need them—and when you don’t

https://www.choosingwisely.org/patient-resources/feeding-tubes-for-people-with-alzheimers/
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Barb1346 Sep 2022
Wow! and Yikes! I am very thankful to you for suggesting I go to the "Choosing Wisely" site. Feeding tubes are now out. Mom is 93. We have great insurance and great caregivers and we are keeping her here with us at home. My ignorance of the dilemna of feeding tubes for end of life care is at an end. Mom is generally cheerful and sweet, But she is now sleeping much of the time and must be hand fed as of two weeks ago. I called her geriatrician today and we will discuss the possibility of appetite stimulants at her next appointment on 10/3/22. Certainly we want her to be comfortable and have her loved ones around her. She has had a wonderful life thus far and we want her end of life transition to be smooth and pain free. It did not occur to me until I read the article that her body may not be processing food in the same way as before and I do not want to try and force her to eat when she just does not enjoy the food any more. I mean she is starting to refuse strawberry ice cream and chocolate chip cookies. We will be switching to a mechanical diet when the dysphagia kicks in but again, not to cause her to be uncomfortable. We are documenting her behaviors so that hospice can be brought in to help out some when her physician thinks the time has come. barb in brunswick, virginia
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I would consult the doctor now about your concerns. Most often when an elder with multiple medical issues becomes resistant to eating, it is a sign that they aren’t processing food well any longer and making them eat becomes problematic. It could be unintentionally cruel to be making her eat when her body can’t handle it any longer. Is she verbal to ask for food? As for a feeding tube, they are generally placed when there is great hope of recovery, as a temporary means. If she is in a decline that she won’t return from and her advance directive states no aggressive care, it shouldn’t be placed. I’m sorry you’re watching this happen, please consult the doctor before trying so much feeding
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Cover999 Sep 2022
Personally, I wouldn't consult the doctor about a feeding tube, especially if he/she knows a GI doc. Maybe Barb can get an opinion from an outside source.
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