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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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 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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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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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:

Let your mother indicate when and how much she wants to eat. Never force food on her.
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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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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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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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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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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.
Helpful Answer (3)
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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