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

Sujean, I hope your faith, friends and family as well as your obvious love for your mother provide emotional support in the days to come.

Went to visit mama yesterday and she just has that blank stare and can not talk now. She only said, I am thirsty and a few words, but mostly not talking. Her lips were quivering and she looked liked she wanted to talk. She is down to 90 pounds and so so thin. She is still pacing but slowly walking. When she finally stops walking that will be the end. She is starting hospice soon, not sure if she will sit long enough. She wanted me to touch her checks and she touched my hair and I held her hand. She reached for me and put both her hands on my face and drew me down to her and kissed me on the lips, as to say goodbye, and I love you. I will never forget that gesture of love, but my tears are flowing as I miss her dearly. I know she will be with Jesus real soon!

I have never heard of Magic Cups,so I looked them up on the internet, they say they only have 250 calories, but as long as they eat something is better than nothing. I like how they say you can serve them defrosted, so for me they would work when going to Drs. appointments.

I would say the dining room is distracting her so she cannot concentrate on eating her meal. My 92 year old mom has been in nursing homes rehabbing and the people in the dining room are way too distracting for her. She just sits there staring at the folks who are yelling or making noises. She does better in her room. Also they supplement her meals with Magic Cups, She gets these twice a day between meals. They are high calorie, high protein and are frozen in little cups like ice cream, which is what she thinks they are. So if she eats the Magic Cups, it's not so important what she eats at mealtime.

Just wondering if being in the lunch room around people is making her jittery? Would feeding her in her room make her calm down and eat a bit more? My aunt has dementia - still knows people - and will no longer eat in public, but eats in her room.

Will your mother eat junk food from fast food places? Perhaps something you make and bring in? Possibly she just doesn't like what they make, and sandwiches from take out places would be better than nothing, my father loved them. He disliked just about everything the NH served but would eat cheesburgers and fries with no problem.

When my wife who has very advanced Alzheimer's quit eating by spoon about 4 years ago, I started feeding her Ensure or Equate with 2 oz. of yogurt mixed in with an 8 oz. plastic completely malleable squeeze bottle with a curved spout. With a little encouragement from the spout's tip she accepts the spout and the drink. She has not lost weight.

But it will happen, our 87 year old thinks fruit yogurt is ice cream...can't tell you what a blessing eating yogurt has become, I give her two a day.

I wentanon my mom has a touch of the same thing. She was down to 107 (from 190!) and I finally stepped in and go over and make her a good breakfast each morning and leave a cold lunch in her fridge. Almost every morning she says she can't eat all that I fix and each morning I say, "Yes, you can, just take your time." I sit and talk to her, so it's more of a social occasion and she will get it all down.

One of the things I left for her lunch were three little cherry tomatoes with half a sandwich and chips and a cookie. The next morning two tomatoes were left. I asked her why she never eats those and she told me they were "special" because she thinks they're expensive (from her childhood) so she's "saving" them. ARGGGGH! So I run into that a lot with her - Depression Era mentality even though we've been away from the Depression for 80+ years. It had a POWERFUL effect for those who lived through it. I've gotten her up to 117 lbs and am aiming for 120. But every step is a lot of work for me.

Our 87 year old, I feel also has some sort of senior anorexia, there is no real reason but she invisibly cuts her food in half (cutting food in half only makes her eat one quarter).

She has and insists that if she ear more than half that she will through up, it has never happened in 9 years, nor has choking on a pill, but insists that both of those will happen, every meal and every Am and Pm medication cycle...there is nothing wrong with her stomach, dentures, urinary tract,swallowing, etc...for her so it seems, it psychological, self talk...we cannot figure why she cannot relax and enjoy her food...she will scarf down a piece of cake, cookie fast, but real food always takes time.

My moms feeling of urge to pee is due to a prolapsed bladder. She keeps getting the urge to go, but at least that is still working. I would assume that they would taper her down. The nurse noted her lips and I hope that they do something for her. Thank you everyone for your kind words, they mean the world to me!

Sujean - Once she is taken off the Zyprexa you could see a decrease in your mom's pacing and also her feeling like she has to urinate so frequently. Don't know the dosage she is on but some of those meds have to be withdrawn in stages or "tier down". (Sometimes they have to take a person off one medicine before they can start you on another. I'm saying they plan to put her on another medicine.) This could be a good thing for her. I am thinking about you and hope things improve for your mom. It is a slow process...glad she has you.
Sounds like her lips need some attention. It hurt just to read about it.

My mom is 84, and they have checked her for UTIs and they are always negative. The medication is very little and she has been on it for years. Doctor today decided to take her off of the Zyprexa, because she has been so tired. I bring in all her favorite foods but only takes a few bites. Her lips are red and sore and peeling. I think tomorrow I will bring 2 tablespoons of peanut butter mixed with honey. Everyone talks about hospice. The doctors called them in when my dad was discharged from the hospital 14 years ago, and my mom sent them home. She said, then and there, Do not get those people for me. I think she thought they would speed up my dads dying process. The doctor thinks maybe if she gets off the Zyprexa and isn't so sleepy that she may start to eat. Really, I don't think that she will. She is so thin now that it is hard to see that. My mom has always been a perfume lover. I bring some when I visit and spray on her, she loves it. She still makes me laugh and I goof around with her. I can still see my moms personality. I say bye bye an she says see you later. Taking one day at time!

Sujean - When my mother had a UTI she would only take sips of her drink and tell me that is all she could drink. She got more confused and paced. I know someone else asked if your mother was checked for UTI but if you answered I missed it.
Is she on pain medicines? They can cause a lack of appetite and constipation. The nursing home should be checking for regular BM's. Jims had mentioned possible BM problems so I don't need to duplicate there.
I went through months of the same thing with my mother concerning the eating problem. She would ask for food and I would hurry up and make whatever it was she asked for and then she wouldn't eat it. Sometimes she would take one bit and say 'that is all I can eat' or 'here you eat it'. She always loved my cooking, always ate whatever I cooked. There it sat...wasted. Then she would ask for something else and I would make that and well I think you can get the idea.
Some of the problem was the pain medicine she was on made her loose her appetite. The other part of the problem was a water pill which made her nauseous. After she was taken off the water pill and pain medicine her appetite returned to normal.
If you know what medicines she is on check to see if any of them can cause a loss of appetite. Don't be afraid to ask the nursing home for a list of medicines she is currently on so you can have it for your records. (That is if you have HC POA) It is good to double check to make sure what she is being given is correct. Never hurts to verify.
Do you bring in any of her favorite foods/drinks if the nursing home doesn't supply it? I use to bring in foods for my mother because the sodium content of the food in the NH was too much for my mother and she wouldn't eat their food. I use to make protein shakes too. I added protein powder and fresh fruit to ice cream and made a shake...hydrated her and gave her protein, fruit and calcium too.
Take care.

feeding tubes are a last resort......messy and she can pull it out any time. momdid this with IV's last time she was in hospital. she didn't know what she was doing......

My mom has Alzheimers and just took her to dr last week. He said the next phase will be that her non voluntary skills - ie, swallowing may stop. You didn't say how old she is, mom is 86 years old. I recently just started accepting this disease. It's not easy. I saw my dad pass away with liver cancer.... ALZ is much harder to deal with, ronald reagan-the longest goodbye....
No feeding tube... don't prolong it. mom paces too. It is all part of it......Life as we know it changes. Friend says it is the slippery slope of life...give her treats, maybe a milkshake? Keep her as comfortable and let her know in your way, you love her always...thank her for the life she gave you....happy visits..Mom was asleep yesterday, I rubbed her feet. she didn't wake up. I called today and she is okay....one day at a time....

I don't know if she has been having bms. Probably not if not eating much food. I will have to ask. Thank you for the thought.

Had she been having regular BMs before stopping eating. One time my mother stopped eating and we thought it might be because of end stage dementia. She did complain that her stomach hurt so we took her to the hospital and found her bowels were impacted. A long night of enema's and laxatives at the hospital and she started eating again.

Thank you for all your comments! My mom said to me yesterday, I am so thirtsy it is pathetic. She kept saying, I need water, and drinks a few sips. She did drink 12 oz for me in a 2 hour period. She says she is hungry, but when I give her food she wont't bite much. I literally feed her a bite of sandwich and I had to say, Mom open your mouth, which she did and say to her bite down with your teeth. She did for a few bites, and can still swallow. She said, Im hungry, I said what for, and she said cheese and bread. I don't think she is making the connection, because then when you give her it, she doesn't eat it. The head nurse said, that because she is still pacing around that she is not actively dying. I asked my mom, do you what to die, and she yelled back at me, No I do not! I said, you better eat then, she says I have been eating, which we know is not true. The doctor took her off the Zyprexa anti-phsycotic med that she has been of for 2 years. My mom has been getting up at 4am and walking around. She still knows her full name. Yesterday, she said, I am sad, I am sick, my stomach hurts. Of course her stomach hurts, she is not eating. Any thoughts!

Your mom probably wants to come home, but at least she is exploring the place. I think she needs the foods/liquids above, something appealing. I also like the idea of hospice, as they are almost always a wonderful group to come into the home. You sound like a wonderfully caring daughter. Your mom is probably afraid because she is caught in an ocean & your are the only beacon she wants to sail to. It is all so terribly hard. Wishing you strength, love, and blessings.

Sujean - 7 yrs ago my mother was in the hospital. She was not eating, dehydrated and restless. She had pneumonia, gout, blood clot in the calf, and recent hip replacement. She has dementia. She was on remeron but was taken off because it caused an increase in blood pressure and was put on a heart monitor until it was out of her system. She was fed by iv for several days. When she gets restless and paces I give her Clonazepam. She was given this when she was being fed through the iv. There were times they had to stop the iv because she just had to get up and walk around. She just could not be still any longer. Other times they let us walk around with the iv on a stand although it wasn't easy with the walker and the stand. She was also given a medicine that was an appetite enhancer. I wish I could remember what it was called. She drank it down and it was about 2 tablespoons. She didn't always drink it because of the taste. If I remember correctly that is why she was fed through the iv. While my mother was on remeron she never gained any weight. There are other medicines other than remeron that may be better at increasing the appetite and I would ask the doctor if there are any that would help your mom. (I am sure you already have asked.) I know of one that made someone gain 30 pounds in a few months. My mother was fed by iv for several days but it did work and she regained her strength, survived everything she went through. Still dealing with the dementia.
I hope you and your family find peace and comfort with each other during this time. Take care.

I agree and gav thats horrific. I feel let them go as nature intended long term a tube is not natural what gives any of us the right to do this its an artificial way to keep somone alive who would rather go in peace. Ive spoken to my family already about this and weve all agreed that if it ever gets to this we will refuse this.

I dont understand how this happens as my friend told me that here the docs will gather family and if majority dont want this then the doctors agree? Gosh SO important that parents write this somewhere.

Gav how heartbreaking and sad your poor father should never have had to go to this extreme its so wrong.

I would also say "no" to the feeding tube. My MIL had early onset Alzheimers and was placed in a nursing home. Although she had a living will, etc., she ended up at the hospital and they put in a feeding tube anyway. Then came even more problems. With the feeding tube in place, there was no decision made as to whether or not she wanted to continue to "eat". The NH said they could not stop feeding her via the feeding tube. The Alzheimers got worse and she would have died because she no longer remembered how to eat and swallow, but there was the feeding tube so she was kept alive without her participating in eating. My FIL actually took her from the NH and took her somewhere so that she could die naturally. The NH knew what he was doing and threatened to call the authorities. She passed away and he didn't even place a notice in the newspaper for fear that he would be reported. This should never have happened like this. A feeding tube for short term healing is good but no a long term solution.

I disagree with those who feel that a feeding tube isn't 'extraordinary measures'. For a very old person with advanced dementia, it most certainly is. It is uncomfortable and brings with it a host of potential complications.
I agree with those who suggest tempting mom with a variety of high calorie treats and allowing her time to adjust to her new home. Make sure the staff is on board with helping to coax her to eat and drink and watching her for signs of distress and spend as much time as you can with her so you can look for signs of whether this is an adjustment or if your mother is simply entering the next phase.
I would draw the line at any attempt to force nutrition. Cessation of eating and drinking is a natural part of the dying process (not all of us die quickly in our sleep - some go quite slowly). When it's time, it's time. We can intervene and delay it, but we should ask ourselves what is our motive and what do we hope to achieve by it.

Has she been checked for a urinary tract infection? I noticed that you wrote that she said she always has to pee.

I dont have any advice just so sorry for you! I know my mum wouldnt want this but everyone is different. I would try it at least you tried. I know my friends mum had a massive stroke and was lying motionless for three years with zero quality of life she didnt want the peg but her siblings disagreed and so she had to watch her mother in bed staring at the walls for 3yrs i dont know how anyone would want a parent to live like this I know if that happened to mum we would all agree to end it.
Your mum seems quite perky so try anything i guess.
So sorry for you this is so hard!

This is the same issue we faced, and why we took her out of NH/AL (our now 87 year old) weighed 98 lbs after 11 weeks. She is now (2 yrs later) taking even longer to eat/ feed, (2 hrs a meal) but has no problem scarfing down dessert. The favorite foods are now picked apart and left in shredded mountains...
While reading, they say MEDICATIONS can cause appetite loss, but I believe it is the lack of drinking water, that brings a stench quite unimaginable to the mouth (gargles with peroxide, dentist suggestions for the white coat) that brings the disdain for food.

I am no expert, sitting with her (87 year old) as I have for 8 years did not help, playing German (she's Austrian) music as I have for 6 months, did not help with eating but helps elevate mood, we will be checking on the BP medicine because it does say that it can cause dehydration, nausea, lack of appetite...

We are now worried, because defecation is becoming the new norm...

I don't know you personally - however you say she wanted to "live". At this point in her life maybe that "wanting to live" has changed. It sounds like she is ready to leave this life and move on to the next. I am sorry if this sounds harsh, it is not meant to be. Just make the decision that is best for both you and your loved one. Best wishes and much love.

Igloo, your post and insight on the benefits of actual chewing are insightful. I wasn't aware of, but it does make sense that the process of eating is an active one which is helpful, vs. tube feeding, which is passive and requires less from the patient.

As to the specific and limited liquid enhancement, I'd like to just share our experience. Since Dad was on Warfarin, was dysphagic and completely NPO for several months, the rehab center physician recommended Nestle's ProBalance. It has less Vitamin K than other liquid foods.

Adding a little bit of humor...when the supply of ProBalance was delivered, the deliveryman wheeled it up on one of the rolling hand carriers. There were 12 cases! I think there were 24 cans in a case. Dad had 6 cans of it daily, so that's 72 cans a week.

I had to quickly clear out the entry closet to store nothing but cans of liquid nutrition. It was almost funny to open the closet and see nothing but cases of liquid food.

I had to get another wastebasket just to hold all the cans for recycling!

SuJean - first of all thanks for posing your question on this site. The very heartfelt & experienced answers you have gotten from others to your situation is the perfect example of why this site is just so very important. Kudos to JeanneGibbs, GardenArtist & Glad-I'm-here for their posts & insight . All of us are who are dealing with our aging parents or too-young-but-has-dementia spouse are all in unchartered waters.

It's hard but you have made the decision that is best for your mom in not having the feeding tube placed. If you can try to keep her on real foods as long as you can. My mom is now in a NH about 3 years and the last year on hospice @ the NH (shattered hip while pushing her chair & till then was very active even with midstage Lewy Body Dementia). Mom is tiny to begin with so has lost quite a bit of weight and now is in the 70+ lb range and has been for months. From what I've been told by her MD & NH staff, hospice staff & dietary @ the NH, you want to keep them on real foods as long as possible. For us, that means mom's proteins are "mechanized" so that it is easier for her to chew but all other foods are just the same as all other residents. Why I asked??? well the whole bite- chew -swallow all help keep their cognitive ability working. Lots of repetitive action and muscle use. The whole hold fork, attack plate, move food about and get it to your mouth all are good cognitive "sparks" for those with dementia. Liquid diet is just too passive. You want them to hold the fork or spoon and push the food about. (Yes it is a total mess and I got a whole stack of terry oversized bibs for her so all good) Mom has a special fork for this. OXO type of fork (got it at Bed Bath Beyond) so big fat handle & easier to grip. Mom has asked for sandwiches as she like to hold it & also I think it's that she has control over this tiny aspect of her life. Dietary has her getting a sandwich cut in 1/4's for lunch every other day. Dietary can really do a lot of specials for residents but you have to request them. I do this in the every 90 days care plan meeting that the NH does as dietary is @ meeting.

As far as enhanced beverages, mom is on TWOCAL HN with FOS (Abbot Labs). Probably is the main reason she keeps the little weight she does have. It's for those requiring low-volume feeding. Hospice orders it. She gets 2 - 8 oz cans a day. She had gone the Boost route - as Boost is fruit based and she is lactose intolerant so Ensure is out for her. But Boost does not have the higher level of protein, carbs & prebiotics that TwoCal does. My mom is totally now bedfast so the prebiotics are important to keep her bowels/colon healthier.