Mom won't eat or drink much! Considering feeding tube! Advice?

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My mom was always a picky eater, so placing her in the nursing home I knew eating would be a problem. She has been in for 6 weeks and now has lost 20 pounds. She has severe alzheimers but still pretty healthy. She is a pacer and is on the move all day. She doesn't sit for any length of time. At the dinner table she started putting her head down, I think because she doesn't want to eat the food. They called me a few days ago, and said she is not wanting to drink much and is getting dehydrated. I have been going daily to try to get her to drink some gatorade and eat. She will take a few sips and probably in 3 hours drank 5 ounces. She won't open her mouth when they try to spoon feed her food or medicine. She just takes tiny bites if at all. Her bun and creatine are high, but potassium and sodium are normal. Her bun and creatine were better today then Wednesday. If levels get to high then asked me if I wanted to give her an iv or possible feeding tube. She paces and so I don't know how she can have an iv unless she is sedated. She is not aspirating food but just seems to have lost her appetite to eat. Dr put her on remeron to try to stimulate appetite. Dr said give it another 2 weeks. In 2 weeks she will be gone. Anyway, she is a fighter and always had a strong will to live, and I know always wanted to keep living. She is not laying in a bed looking at the wall. She paces around, still says I have to pee an then sits on toilet. She still says Im thirsty or Im hungry, then doesn't eat or drink much. Maybe they are just familiar phrases. I don't know if she would try to remove the feeding tube, but if it is covered up with her clothes maybe not, unless it hurts. If she does pull it out then I guess we can say we tried. Because she is still so mobile and talking, I think she may benefit from the feeding tube. Would love for so input on my situation.

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What stage of Alzheimer's is she in? What is the quality of her life? Does she recognize you? Is she content most of the time? Are there things that make her laugh? Smile?

With that kind of weight loss, I expect that your mother is eligible for Hospice. Have you considered that?

The feeding tube came up for my husband, twice. I did a little Googling on feeding tubes in the elderly with dementia. This researcher's remark represents a view I came across repeatedly: “We found that there is no research evidence that tube feeding prolongs survival or improves the quality of life for people with advanced dementia,” said lead author Elizabeth Sampson, M.D. “In fact, some studies suggest that tube feeding may have an effect opposite to the desired and actually increase mortality, morbidity and reduce quality of life.”

My husband was opposed to a feeding tube in his situation, and we decided against it, both times. The first time a very young speech therapist was presenting the option to us. She told us all the presumed benefits. (She did not mention that dementia patients often rip the tube out and to prevent this are sometimes restrained.) When we told her the decision was not to have a tube, she left the room to update the chart. When she came back she had tears in her eyes. She said, "I wish my Grandfather had not had a tube!"

My brother recently had a feeding tube, while he was recovering from treatment for throat cancer. He is now eating normally. I think that is exactly the appropriate use of the device -- as a temporary measure while someone improves to the point they can eat again. Or perhaps even as a permanent solution if they have a high quality of life. But when someone is approaching the end of their life anyway, I personally just do not see the value.

But that is a very personal decision. And I do know at least one person who had a tube for her loved one because of her religious beliefs.

I certainly would not criticize you for either decision. You asked for input and I'm just frankly giving you mine.

I do suggest that you do a little research with Google and have the doctor explain exactly how this will work, the benefits and risks as he or she sees them.

This is an extremely tough decision to have to make. My warm regards to you and to your mother, and I wish you peace, whatever you decide.
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Reply to jeannegibbs
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What a slippery slope the tube is! Mom had one two different times. The first time immediately after stroke/surgery until she was able to eat again on her own. The second time a more permanent one was put in and she kept pulling it out despite belly bands and creative clothing covers. She finally began to eat again, but for what? The quality of life was terrible and we wondered if the decision to do it just prolonged the inevitable. 4 years in a NH , unable to walk, potty, feed herself and even know her family left a shell. WHY? If your Mom has a quality of life yet that is one thing, but just using it to wring out the last moments of life no so sure. My living will has addressed this issue for myself and I know that I would not want to be kept captive in a body when my time comes .
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Reply to 1tired
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I want to share what happened when my father (90) quite eating. His doctor prescribed ,MARINOL (Dronabinol). This is the synthetic marijuana that is often given to cancer patients to help their appetite. This was a miracle drug for my father. He was eating normally with 2 days, and lived another 2 years. There are alternatives to feeding tubes.
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Reply to MarciaH
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One thing not mentioned here,is sometimes as the disease progresses, they actually forget HOW to eat.... they may say they are hungry or thirsty, but when the actions are required to accomplish this.... they have forgotten... I personally am against tube feeding unless it is a short term measure until they improve and are able to eat on their own again... a very tough choice for you.... and we all understand... I support what ever choice you make.... like you said, you have to say you tried.... prayers for you and mom
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Reply to ladee1
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Thanks to all of you for your kind words and prayers. This board was my only support group other then my family. I asked many questions and got so many great answers. This board was such a life line to me. I also, enjoyed others questions and answers. What an amazing website to share your pain, and to help others with their pain. I have learned many things from friends like you. You some time never know, what you words can mean to someone who is hurting. God bless each and everyone of you who reached out and gave me encouraging words and comforting thoughts! Your kindness did matter to me and for that I am thankful!
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SuJean-
"She has severe alzheimers but still pretty healthy". Alzheimer's is not healthy, nor is it normal aging. The body systems will begin to shut down one by one which will be hard for you to be a part of. Sometimes the most loving thing we can do is to let go. Do you really think your mother would want to live like this? I don't think many people would want to live when they are completely dependent on others for their care and survival. A couple of years ago in one of my mom's more lucid moments, understood what is happening to her, she asked me to help her end her life. Think your decisions through carefully and thoughtfully. Some caregivers have a very difficult time letting go, and have a very difficult time after the passing of their loved one. Your decisions will be yours, but they need to be what your Mom would want.
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Reply to gladimhere
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My heart goes out to you...I just had to make this decision in February. Mom had lost weight..104 to 89 lbs in a couple of weeks, had three infections..I almost lost her 4 tiimes. Mom and I had talked about this long before she got ill.....and teh doctors wanted to do this...even though she is now 88 and cognitively very aware, I opted not to do the tube. It was the right decision....Mom is still alive and enjoying things again, although she has some things she is recovering in rehab for...I researched the topic of tube feeding and unless it is in a case of someone having ti to get them through chemo....personally I would not do it. I had a couple of staff members at the hospital tell me what happens....and my research confirmed it...hope this helps you somewhat.
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Reply to momof52014
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SJ, do you have POA? Is there an advance directive and DNR? She may have decided it is her time. If she has the document then I would let her go.
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Reply to gladimhere
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My Mom's most recent hospitalization was for a bowel obstruction. Due to dementia she is not a candidate for surgery. To get the intestine to open up the needed to insert a GI tube through her nose and down to her stomach to relieve pressure lower. It worked, but not before Mom pulled that tube out three times it had to be reinserted. She just did not understand where she was or that she needed the to be. She also pulled out her IV twice. In order to keep mom from removing tubes and needles, she would either need to be sedated, restrained or 24\7 watch in the hospital, which is what we tried. In order for the 24\7 to work, even if you step out for a bathroom break someone needs to be watching her.
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Reply to gladimhere
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Sujean it's so hard when our moms aren't eating. Mine is eating very little these days. She doesn't have Alzheimers per se, but has no short-term memory. She's gone from 190 lbs to 106 pounds. With my mom, it seems like she has a certain calorie level each day she'll eat no matter what I do. I've been going over and making her a good breakfast and leaving lunch in the fridge. If she eats both, then she won't eat any dinner, even though she's got a ton of different things readily available (Boost, nuts, rice pudding, cookies, mac and cheese, etc.).

We spent 3 hours in the ER on Tuesday and she was dehydrated, so now I'm trying to get her to drink more water. I told a friend I feel like I'm trying to bail out the Titanic with a teaspoon. I agree with Gladimhere, think through your decisions carefully. We can only do what we can do. Our mom's bodies have their own timetable and I'm not sure we can affect that no matter what we try to do. It's just incredibly hard for us to go through. No doubt about that. No doubt at all.
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