By moderate Alzheimer's I mean: Mom can still recognize close family members; can answer a few routine questions or make a few customary statements (but sometimes gets the words mixed up); can report pain; can walk, although she is a bit unsteady at times; can dress herself with assistance (but sometimes get the sequence wrong) can pore over the newspaper, but not tell you what she "read"; She increasingly has swallowing problems, leading to aspiration pneumonia on one occasion. For a person who is NOT at end-stage Alzheimer's, would you consider installing a feeding tube?
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Q: Would you install a feeding tube in a patient with moderate, not severe, Alzheimer's?
Answers (7)
5/ 2/08 8:50am
Hi, Jonquil,
Tough question - and I'm sorry that you and your family are having to go through this. I just can tell you in my mom's case that prior to being diagnosed with Azheimer's, she had made it very clear verbally to family members that she did not want extraordinary measures, such as a feeding tube, taken. She also included this in her Directive to Phyicians/Living Will. I wrote about this situation in my sharepost about a year ago, Mom's Swallowing Trouble and the Feeding Tube Decision.
So I'd start with what your mom has (hopefully) put into writing and then honor her wishes.
Dorian
5/ 2/08 9:30pm
It is tough indeed. I have no idea. My father-in-law with advanced Alzheimer's is too late to come with reasonable request. My husband has the health care proxy and is his POA. so my husband will have to decide for him.
I heard that feeding tube may not be comfortable. So it depends on what situation she is in. Balancing between the tube and quality of life....
I thought one could feed the person with IV first and see. (This is the hospice.)
It does not make sense that the feeding tube cannot be removed later... Guess you can stop feeding but the tube could still be there.
I have not looked into this issue. But I heard that getting feeding tube is not necessarily comfortable.
Nina
5/ 3/08 12:47am
Hi Jonquil,
I'm sorry things are not going well for your Mom.... and also for the sadness and stress it creates for you and your family. I need to qualify that I am not a health professional. I have had experience with Alzheimer's through my Mom and some of the people I have met along the way of trying to help her the last 8 years.
It's a heart wrenching call to have to make. My Mom had a living will, which obviously made it much easier. My Mom and Dad had always told me what they wanted as well. When she first started having swallowing problems, my Mom was put on a thick liquid diet (everything had to be around the consistency of honey). The product "thickit" was used to thicken liquids and everything else was blended up. She could not chew but plain water went down too fast and choked her. She saw a speech therapist several times when she started having problems. I never realized how complicated swallowing can be until my Dad had trouble after a stroke.
It's awful that Alzheimer's is 100% fatal, but that's the reality. So for me it became about keeping my Mom comfortable both physically and emotionally. For me a feeding tube would have been too much stress emotionally as well as being extremely uncomfortable physically. The benefits of a feeding tube? More time probably, but what will the quality of that time be?
It's a sad saying in this context, but "Just because you can do something does not mean that you should" had to become one of my mottos with taking care of my Mom. My Mom was not going to be getting better and that had to be taken into consideration when making decisions about her care. Often what my heart wanted to do was in direct conflict with what was actually the best thing to do given the situation.
What does your Mom's doctor have to say about this? Also - If you don't have documentation, perhaps you can recall a time when the subject came up (visiting a sick relative with your Mom, etc.) and maybe that will help you decide.
Most of all, don't forget to take care of you during this trying time.
regards,
Bob
1/29/09 8:04am
Sometimes I think its just plain barbaric for people to think they can just decide not to feed a loved one because "they are not getting better". Where there is breath, there is life and where there is life there is hope. Even if the patient was in a sound mind at one point and wrote their wishes that they did not want to be tube fed they might have changed their minds later on had they known the wrenching feeling of hunger and couldnt tell anyone they changed their mind! The uncomfortableness of the tube is far less than you think and its just like anything you get used to like wearing a bra for the first time! You dont even know its there...so Bob (down below) either you just dont want to be bothered to care for your ma anymore but as for me the thought of starving my ma to death would just about throw me over the edge....
5/23/11 5:55pm
I so agree with you. Linda seems unkind.My husband has chosen not to have any procedures or life saving measures when he gets to that stage. When he was first diagnosed ( 10 years ago, early onset) he asked if I could shoot him as he remembered his Dad suffering terribly with this disease. One of the daughters could not let him go, so that poor man was kept alive, wearing a diaper, not being able to talk and sit in a chair all day with a doll in his lap. I do not want such an ending for my husband, when he stops eating and drinking I will let him go, as his quality of life is not very good right now. I know it will not be easy but for me and my family but it will be the right thing to do. Have compassion and be preprared to let go.
Take care!
6/15/09 1:40pm
Hi,
I just lost my father to Alzheimer's. Swallowing problems at the end. I enjoyed feeding him and I know I went too fast at times. Takes a subtle touch and I realized I needed to let him be in charge of when the next spoonful comes. Not the caregiver (me) who's usually in charge of things...I'd been so used to making all the decisions, it was a shock when he started talking to me "don't put it in" (e.g. the food). So he was really capable of saying when and when not to feed, even in his state.
Can you use a feeding tube at home? I not even sure if feeding tube will stop food from going into the lungs - that's was the whole problem with my father - the reason we had to be so careful when feeding him. In hindsight, I would have tried a feeding tube. I would have done another hospital visit before going on hospice at home. The IV fluids at the hospital really perked him up in Summer 08, 07. He couldn't get that much liquids any other way, because of the swallowing problem.
Larry
10/ 3/09 12:48pm
For three of the last four days, I've been sitting beside my 6-year younger sister who is in the final Alzheimer stage (stage 7 of Reisenberg's seven stage scale). Her feeding tube was inserted after she had passed through the "moderate" stage as you describe it so these comments may not be too helpful. Her Alzhemier's Disease (AD) was diagnosed when she was about 55 years old and it progressed quickly to this point (now age 65). When my sister's husband and children had the feeding tube inserted, I'm confident they did exactly what they thought at the time was best for my sister and what she would have wanted done. They have provided my sister with the best care in the world for which I'm eternally gratefully. Now comes the difficult part. Despite round the clock care and despite medication and a patch to reduce saliva generation, my sister is going through repetitive choking from her own saliva and severe coughing, three to six times an hour, requiring externally administered suction by a caregiver to try to remove the saliva when it is coughed up. No caregiver can be 100% attentive meaning my sister experiences a sense of "drowning" in her own saliva repeatedly hour after hour. Breathing is labored and the only sounds she ever makes are loud groans from the choking and coughing and constant raspy, "gargling" labored breathing. I'm praying for God to take her NOW! My wife and I have just renewed our pact to NEVER have our life extended by artificial means when terminally ill with little or no quality of life. I can't advise you, but I can tell you this dreadful story. God Bless.
1/27/10 3:55pm
my mother has been in and out of the hospital/ re-hab centers off and on for the last six months; slowly every day she seems to be going down and not eating anything at, including Ensure. what i am concerned about is her lack of nutrition. she did say in her medical power of attorney that she did not want any type of machines keeping her alive. its just so heartbreaking watching her in such pain all the time with nothing i can do for her. thanx for letting me vent. Donna
4/11/12 10:46am
Hi. I am an Alzheimer's caregiver. I found Vitamin Code
raw B-Complex from Vitamin Shoppe stops choking and most
gurgling. Do not think synthetic B- complex is the same.
This has digestive enzymes to help break down food during
the digestion process. It has probiotics for immune system.
Also, plenty of raw vegetables and fruit.
Also, I just learned that tyrosine needs
the B vitamins to work properly. Tyrosine
is needed for neurotransmitters to work.
Also, a banana or two a day is sooo good
good for them! Not only does it have
tyrosine but magnesium and b vitamins.
God bless you!
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By Jonquil— Last Modified: 06/18/12, First Published: 05/01/08
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Sometimes I think you have to be truly a jerk to criticize someone who is trying so hard to do the right thing for their parent! Where do you get off making comments about something you haven't experienced?? This issue is NOT cut and dry-- medically it isn't clear that the tube helps the person, and some studies show that it increases the chance of pneumonia. But if you did disagree with something, perhaps you could use a kinder tone next time...