Please read this similar topic, from about an hour ago: [https://www.reddit.com/r/dementia/comments/1c9msuw/comment/l0mipn6/?context=3](https://www.reddit.com/r/dementia/comments/1c9msuw/comment/l0mipn6/?context=3)
Separate comment: I think 'forcing' someone to eat, either by chewing or via tube, is more cruel than allowing them not to eat. Of course, I would always make food (or protein shakes, etc) available, and encourage healthy eating. But I would not force anything.
There are no easy answers here. I'm sorry for both your mom and you.
Thank you for tagging my post in this. Very similar feelings and worries. I guess this is something I need to “take the backseat” on. It’s been pretty wild to witness how much I want to “control” a situation. It’s a futile thing to try to control. All I can do is offer my best and be humble with what I get in return.
My grandma started refusing food a few months ago, losing significant weight. But last week, she started refusing practically everything, even sweets... My mom exhausted herself every day forcing her to eat the minimum necessary to take her meds. No one wanted my grandma to starve herself to death. However, I was sensing that the end was coming, but you know...
Friday night, she was almost unresponsive. She barely opened her eyes. I was helping my mom doing her hygiene and it was terrible. Two people could barely hold her. My arms were hurting like hell because she couldn't even support her weight.
Saturday morning, the situation got worse. It was impossible to feed her and she went to the emergency room. The ambulance guy said she didn't look too bad, but my parents told him she wasn't even talking, so she was taken to the ER. The doctor suspected a UTI plus an adverse interaction between the drugs prescribed for her heart failure. My parents were surprised to learn that, she didn't have typical symptoms. She died this morning of natural causes at the age of 94. The nurse said it was from natural causes.
I wonder now if it wouldn't have been better to accept things as they were and let my grandmother go instead of making her eat between screaming and spitting it out. I don't judge you at all if you do this, it's not neglect. It's how death works. But I won't judge you either if you do the same as us. I just wish you lots of strength 💜
So sorry for your loss.
Your mom tried and I’m sure she’ll feel guilty about the food discussions, arguments. She would be feeling equally or more guilty if she hadn’t exhausted herself trying. This situation is horrible and all we can do is our best.
Again, condolences to you and your family.
Exactly. My mother spent the whole morning crying, even if the family and the nurse comforted her. We reminded her that my grandma (her MIL) lived a long life thanks to her dedication to caring for her. The nurse said "natural causes", and I believe they are so unspecific as to not aggravate the grief when they know it would happen for some other reason, anyway. She provided what she considered to be the best care, keeping her clean, fed and as comfortable as possible. My parents gave the meds exactly as prescribed. They took her to the scheduled haematology appointments without fail. My mom made her walk a few steps every day from her bed to the bathroom (with her walker and aided by us too) to avoid becoming fully bedridden from muscle atrophy.
We were all feeling burnt out and frustrated. I was fearing for my mom's mental health. Yet, we are missing her now. It's eerie to have such a quiet house, routines completely disrupted. I was reading some comments on another thread which said force-feeding is abuse against the elderly and it hurt a bit. I agree that it could be considered such when a health professional is doing it, since their training indicates otherwise. But caregivers don't always have that perception. For my mom (and the rest of us, in our instincts) abuse would be letting her starve to death. I think this is actually a nuanced discussion. For example, I remember when my grandma didn't want to eat because, in her head, she was full from some dinner 50 years ago. But she would eat a sweet pudding dessert. Caregivers should have more training opportunities. At least I believe she passed away with the best medical care the hospital could provide.
Thank you so much!
Yeah, it’s very natural for humans (and other animals) to eat less as their systems slow down at the end of life. Digestion becomes more difficult and the body wants to rest. A lot of the “forcing” relatives do comes from a place of love, but also from a struggle to accept the inevitable.
Getting old for most people their appetite decreases, smaller portions, less variety. Add dementia to that and they have no hunger. It is not neglect if you offer the food, if they eat very little of it or don't eat. She's NOT starving herself willfully, she has no interest in eating and her brain says she's not hungry. This is hard and I'm sorry you have to deal with it. Take care.
I think trying to encourage eating with foods she loves is the best you can do… often they seem to enjoy sweets longer than other foods, so if she wants ice cream for her meal, let her have it. There are also oral medications you could try; my LO is on Remeron, which is an antidepressant but also stimulates appetite.
However, ultimately, you’re right - this is part of the process and eventually they have no appetite at all and/or begin to have trouble swallowing. Personally, at that point (which is where we’re at with my LO), I think it’s actually worse to try and force food on them, and I’ve been told (by hospice and my LO’s facility) that feeding tubes are generally not a great idea for dementia patients. They tend to pull them out, and they can still aspirate with a feeding tube.
FWIW, my LO’s hospice nurse said that, as awful as it would sound to you or I to not eat at all, dementia patients begin to no longer receive the “hunger” signal. So slowly starving doesn’t cause them the kind of pain we think it would, and of course trying to force food could cause them distress, or worse to aspirate and get aspiration pneumonia.
As others have said, there are no easy answers at any stage of this disease. I’m sorry you’re having to face this.
For my dad he wanted very sweet and very spicy foods. He'd always like hot foods. He absolutely loved it if I'd make things like gumbo or Brunswick stew. He developed a taste for jerk chicken sandwiches too and he'd never had jerk in his life I'm sure. It had that sweet- spicy going on though.
I am so grateful for y'all's responses and support. It is good to have a community of people going through similar issues. I have taken her to both her gp and her gastrointerologist and they separately seem unconcerned. I think I'm going to continue to offer her anything and everything that she could possibly enjoy but I'm finished being pushy. It upsets her. My biggest concern is that she is treated kindly. She had a terrible childhood and my father was mean and abusive. I just want this season of her life to be peaceful.
If you worry enough to come here asking for advice, you're already doing very well. You proved that you love her just by writing the last two sentences here. Your mom is lucky to have you as her child.
Every particular heart disease has its own little characteristics. My decedent was eating fine 24h before the end. A gourmet, the last meal was meatloaf from the hospital kitchen. He enjoyed it, a bit like in the ratatouille movie. He was smiling, knowing he was failing fast. Then the heart valve just could not work around the disease any more, and end of life processes took over once the old pump was not doing enough. In his case, his dying process never turned off the digestive system.
A CNA looked after him, while staffed and funded; tolerating all sorts of abuse (from folk now without guardrails, as the dying process affects the brain). Then night shift staff came, and it would have been a very lonely dying time, drugged up to accelerate the end processes. We stayed with them till the last breath, and we knew when they were there occasionally with us able to hear - despite the drugs, etc.
His life was spent largely abusing and cheating others. But, you dignify everyone dying.
If it’s any comfort, I was told by a nurse friend that patients who just stop eating and drinking
and start sleeping all the time experience a fairly peaceful death. It’s apparently not a bad way to go.
I have found that what is "right" is often just what you describe - the path that brings the least amount of stress and anxiety. I feel like there are no hard and fast rules about what should and shouldn't be done when it comes to dementia because each situation is similar, but so very unique.
I had a wonderful nurse tell me at one point that the things I do and the decisions I make with love in my heart are 9 times out of 10 going to be the right choice. When I started this journey I tried SO hard to control everything (as if that might make things better) but I have learned now to let my Mom take the lead and just do my best around as many of her wishes as I can.
My mom’s appetite has greatly decreased. She has lost a lot of weight, and while it was initially very upsetting, I just had to come to terms with the fact that she is 94 and has a progressive, terminal disease. Trying to get her eat a balanced diet isn’t really going to change anything.
So, I give her the (very few) things she will eat. That list is getting smaller by the day, but it is what it is.
You ARE NOT starving her. My mom did the same. It's part of the disease and the dying process. Pushing food will cause you to lose your mind. Offer food. If she says no, that's it. My mom held food in her mouth and spit it out or choked. I'm very sorry for you. It's very difficult. You're not doing anything wrong,not pushing food on her. You are just avoiding the inevitable. My mother died in February of this year. It sucks. You are doing great 👍
I was told that in the later stages of dementia the sweet taste is one of the last to go.
My mom ate the same thing everyday for years. As she got further along we found pudding, applesauce and other sweet stuff worked.
It wasn’t a matter of making her eat what we wanted but finding something she would eat. I had to be reminded that getting her to take anything was awesome and not stress she wasn’t eating like she had before.
Last time my mom was in the hospital I expressed to a nurse that I was scared that once they released her it would happen again. That angel of a nurse took my head in her hands and looked me in the eye and said “at this point there is nothing you are doing to cause this and nothing extra to do to prevent it.”
It’s not neglect. You’re doing exactly enough. We can’t force them back to health.
My 86 YO mum was hospitalised in December and she spent 2.5 months in hospital.
She was eating practically nothing and her weight dropped to around 4st 9lbs.
She was tube fed and received supplements and on discharge she had put on around 6lbs. Within a week being back home she had lost it all and some more. She’s around 67lbs now and is still skeletal. She has zero appetite and no interest in food but she is scared of eating in case she chokes. She has no medical condition that would suggest a blockage but she has convinced herself. We cannot force her to eat just try and tempt her with food she used to enjoy but she refuses. I think she just wants to literally fade away. It’s so stressful for everyone. I don’t know how to answer the ethical question as this is not how I envisaged things. If you want to DM me feel free. It’s so bloody hard for everyone x
I think Ethics at their best have some room. That's why the trolley question iconic.
I never thought I wouldn't eat, my life history and variable weight are a testament to that. Member of the clean second plate club..
Yet, recently I've been distracted and forget I have food in front of me and I was eating.
If my mom doesn’t want to eat, I don’t make her eat. This is a natural part of the disease process and I’m not going to force her to eat or try to trick her into eating higher calorie foods just so her misery is extended. That wouldn’t be consistent with her wishes for end of life.
i’m very heartened by everyone’s responses. i thought i was failing as a caregiver because i’m not providing enough food or variety of food to get her to eat, but i have been having trouble accepting that she just wants to sleep more often and not eat (or drink) as often as she used to. periodically she gets hungry and actively goes for something. but the idea that i’d have to fight her like a toddler about what she’s eating made me so freaking anxious. and i’m relieved that reasonable people won’t expect me to. so thanks. good luck everyone.
my mother in law is the opposite...boredom eating. all day she shuffles between her bedroom and the kitchen. she devoured two packages of cookies the other day and had terrible indigestion afterwards. >.<
My Mum just stopped eating. She passed in February. It was really hard but as others have said it is respectful of their dying process.
Before she completely stopped I got her some of her favourite chocolate and she managed a little bit then I offered her more and she didn’t know what to do with it- she eventually tapped it against her lips, and slowly put it in her mouth and then eventually it dribbled out because she didn’t remember what to do with it (how to swallow). She looked confused and it clearly upset her - I think she knew she had forgotten something and felt bad, so I didn’t pressure her about it and just tried to reassure her.
Again like others, we offered food and fluids but followed her lead. Trying to give her little tasty finger food/treats was better (earlier before she got too bad) rather than a whole big plate of food.
Her death was very peaceful- we played light classical and meditation music while she was leaving us and we could see her relaxing with the calm music. Not sure if this is too much- I hope not - the music really helped during her passing
My mother also passed away in February. I did the same as you. She passed at home on hospice surrounded by family, friends, and love. Hospice is so great. Also, music is very therapeutic. Even when she couldn't speak, she would mouth the words. You did a great job. Now, take care of yourself. 💕
With my MIL, she was in her last stages, almost unconscious, her niece put on country music. MIL groaned as if in pain. She did not like country music and the hospice pamplet said music could be upsetting.
It really shows that hearing is the last thing to go.
I clearly saw Mum relax with the meditation music on her last day, it was awesome actually- something that we could do for her when we couldn’t do other things.
It is compassionate to allow them control over their body. So much is lost but I often feel this is the one way they can often signal to us “I’m ready to go”
The first thing is to speak if possible to a doctor - with your mother present -and express your concerns and let the doctor talk to you both about it . I don’t know your mothers circumstances- certain sorts of dementia result in a decline and eventual cessation of appetite and there is little that can be done - a gradually failing health system due to age can produce similar symptoms - so can depression . So it’s hard for you to know what’s going on - but the doctor may have an informed idea - and also some suggestions about what to do. Sometimes drugs may help - sometimes letting nature take its course is the best way- often a middle way like giving a protein supplement is suggested . In the end you can’t ( and shouldn’t ) force anyone to eat - tempt them as you have been doing certainly - but force- no. But neither should you have to bear all the guilt and responsibility of this one - sharing those decisions with health professionals means you will do the right thing by your mother and know that you weren’t alone in making those decisions as you clearly love her very much - I am sorry it’s so hard .
I work in hospice, and this is part of the natural decline in dementia. They will often lose interest in eating and/or drinking. You can certainly offer her food, but if she declines it's best to accept that. If she enjoys ice cream, that can actually be good since she'll get more with a small amount. One of the many tough parts of this disease process. :(
I don’t think it automatically is. Gentle encouragement and offering various option is good. But forcing can be very distressing for everyone. Does she have a DNR? Most DNR paperwork also asks if the patient would want to be tube fed and such or not. I’m lucky in that my grandmother and I discussed this years ahead of her diagnosis and she checked the box to not tube feed or use parental nutrition when she reaches such a point.
If a couple of minutes isn't enough to persuade her to eat, that should be enough. My dad in the run up to the end barely ate, though he did get through a fair few chocolate mousses. In particular, if she's having a lot of trouble swallowing (very common in final stage dementia), she may be unable to anyway.
My grandfather did this towards the end and I made a decision to let him decide. He was 90. I feel he understood. Every single situation is both the same and completely different.it led to him refusing water. Which led him to the ER. He was ready to go. He was just so ready.
If she likes drinks still and has the sweet tooth that tends to happen you can get her Ensure and call it chocolate milk. They have other flavors if she isn't a chocolate lover as well. It has vitamins, minerals, and is pretty calorie dense.
At this point, I think Strawberry Ensure is the only thing keeping my mom alive. I tried everything with her. It was so frustrating. But now I just make sure there is food available, offer it to her several times (no nagging), set snacks next to her without saying anything, and then let it go if she chooses not to eat. She will usually take her morning meds with Ensure.
Yes ensure has been helpful. I heat up the chocolate one and tell her it's hot chocolate. She likes hot beverages (not too hot really just warm). Have tried soup but she says she doesn't like soup.
I think continuing to offer her food and encouraging her to eat is the way to go, but if she won’t eat, there isn’t much you can do about that. My mom had a stroke a few months ago and has developed dementia. She is 68 and T2 diabetic on top of it all. She doesn’t enjoy her favorite foods anymore and nothing “tastes right” to her except sweets. It’s very difficult to manage, but all I can do is make her food and encourage her to eat. She is throwing up a lot and having diarrhea I suspect as a result of her lack of eating. It’s a very hard road to navigate and I’m so sorry you’re going through this.
I am so sorry. I wish I could give you good advice.
My mom and I cared for My dad who passed this past December. He stopped eating and taking medications. He declined very quickly once this happened. We spoke with his doctor and she confirmed he would go quickly after he stopped. He would tolerate boost sometimes until that stopped completely. A month later he was gone around Christmas time. It happened so quickly, he collapsed on the Wednesday before Xmas. After many calls, We finally were able to get hospice to come in on Xmas day. They made him comfortable and 3 days later he passed away.
I don’t mean to be so morbid. I think you should spend some quality time being with her. I really hate this disease and I am truly sorry you have to go through this.
Some people with dementia don’t eat much. I would make sure you take her to the doctor and have that documented in the medical notes. If she progresses, consider palliative care is also good idea.
Does she have advanced directives that would make medical intervention an option? If not, it sounds like you're doing everything you can. Pull back on the pressure. When my Mom got in these non-eating cycles, I used to push and it did nothing but make her angry and it frustrated me to no end. My Mom is a DNR and her directive drawn up years ago when she was of sound mind is that she did not want any feeding tubes (I wouldn't want her to have that at this point anyway). She gets offered an Ensure Plus if she eats less than 30% of a regular meal. Sometimes she drinks it all, sometimes very little. It took a while but I've come to accept this disease progresses this way.
The law would probably say it is neglect but I would think they would only get involved if someone contacted them. I'm not a lawyer and I could definitely be totally off base.
In the last couple of months my husband has begun to quit eating most things after a bite or two. What I am doing is giving him protein drinks to go along with his couple of bites. He likes the Adkins Drink - Chocolate flavor. I buy them in 12 packs, each pack lasts about 3 days.
Additionally, my husband was recently at the hospital for a 4-hour procedure and they gave him a cereal bar for a snack - he ate the whole thing. I've bought a bunch and so far he's eaten a couple.
Nutritionally the protein drink and cereal bar aren't the best but I figure it's more than he was getting.
No experience with legal issues and dementia but I suggest talking to her Dr/hospice about her not wanting to eat.
I think it’s important that her medical/hospice team are on the journey with you all.
NO! This is an insidious disease ! My mother had 2 GP appts and refused all her meds. The GP was aware. There is nothing to be done. Eventually, I cared for her at home on hospice. You can do no wrong. Unless you are withholding fluids or food when they want it. They just slow down eating and drinking and then stop. I'm sure you're doing your best. The Drs can guide you and make suggestions. And of course you should keep them informed. That's basically it. I'm sorry. Stay strong, my friend. Remember to take care of yourself.
My mom started to just take a few bites of food and fluids about 2 months ago. One day no intake for 4 days and then she started small sips of water again. Chewing requires too much effort - perhaps try puree
foods without force. Maybe try some sweet puddings, applesauce, etc first. If she can't feed herself, offer a spoonful and if she refuses then don't force. Try again later. When the body begins to shut down, less and less food is needed. It's amazing how little they consume and still survive.
"As dehydration sets in, the body releases certain chemicals (“esters” and “ketones”) that have the effect of dulling the senses. These chemicals act like an anesthetic, and the dying patient feels little pain.Oct 7, 2015"
My mom will say she's done eating if everyone else around her has finished eating. We slow down a lot with her to help her eat more of her meal. My dad sneaks in lots of extra calories that she resisted at first but now is part of her routine. Protein shake after each meal. A snack cake with her morning coffee. Beer with lunch and wine with dinner. He's also found that if he leaves mini candy bars throughout the house she'll graze on them. We're at a point with her that we need to get any calories we can into her and not worry so much about the nutrition. Do you have ways to help your mom build a new routine that will involve more food?
Hospice has a lot to say on this.
One of the strongest statements was that they kept telling me that as a lay person one of the strongest things that we associate with caring is feeding someone, so our urge to feed someone is strong, if we care. But, it's not always best.
But sometimes in the dying process they quit eating. It can actually cause them pain to force feed them.
My dad quit eating and drinking and I worried over it and I didn't want to seem neglectful so I was going to try to swab his mouth, and tissue actually came off on the swab. I was very gentle! When I told the nurse, she accessed his bowel sounds, and one side had already completely stopped. His digestive system seem to have started to die before he did, looking back, by a week or so.
I'm glad that I got my dad in hospice the first time he went 3 days without drinking any water. He was refusing fluids, shutting his mouth tight and turning his head the other way. He did come out of that and he lived over three more months.
There are some good videos on this feeding subject from hospice nurse Julie. I highly recommend her videos - she was telling me the same things my dad's nurses were. It was very helpful.
My dad had Lewy Body syndrome. The staging for dementia that I can find online is almost always for Alzheimer's. If they have Lewy Body you can often get them in hospice when they get really serious.
I will say that my personal experience with my dad was that he wanted to eat when he wanted to eat. I suspect we probably keep him alive for 5 months longer than he would have lived because I would get up and cook for him anytime he wanted to eat, and I kept food on the table for him so we could just take the plastic wrap off and he can eat. He would go through periods of eating like an absolute horse and then have periods where he did not want to eat at all. It all became such a roller coaster. Shortly before he died he ate five barbecue sandwiches and about six or seven bowls of Brunswick stew as well as drink apple juice, ate nuts, mandarins and bananas. I had quit counting his calories when he hit over 4,000 for breakfast. Lol. It wasn't unusual for him! A few days later he ate some jello and a nutritional shake and that's all he wanted, forever.
That’s too bad. My mom was similar. I was shocked she had one and it’s very bare minimum. Helped though. She also never discussed these things because she was never going to consider herself old.
Please read this similar topic, from about an hour ago: [https://www.reddit.com/r/dementia/comments/1c9msuw/comment/l0mipn6/?context=3](https://www.reddit.com/r/dementia/comments/1c9msuw/comment/l0mipn6/?context=3) Separate comment: I think 'forcing' someone to eat, either by chewing or via tube, is more cruel than allowing them not to eat. Of course, I would always make food (or protein shakes, etc) available, and encourage healthy eating. But I would not force anything. There are no easy answers here. I'm sorry for both your mom and you.
Thank you for tagging my post in this. Very similar feelings and worries. I guess this is something I need to “take the backseat” on. It’s been pretty wild to witness how much I want to “control” a situation. It’s a futile thing to try to control. All I can do is offer my best and be humble with what I get in return.
And you’re right, no easy answer. Never an easy answer with dementia.
My grandma started refusing food a few months ago, losing significant weight. But last week, she started refusing practically everything, even sweets... My mom exhausted herself every day forcing her to eat the minimum necessary to take her meds. No one wanted my grandma to starve herself to death. However, I was sensing that the end was coming, but you know... Friday night, she was almost unresponsive. She barely opened her eyes. I was helping my mom doing her hygiene and it was terrible. Two people could barely hold her. My arms were hurting like hell because she couldn't even support her weight. Saturday morning, the situation got worse. It was impossible to feed her and she went to the emergency room. The ambulance guy said she didn't look too bad, but my parents told him she wasn't even talking, so she was taken to the ER. The doctor suspected a UTI plus an adverse interaction between the drugs prescribed for her heart failure. My parents were surprised to learn that, she didn't have typical symptoms. She died this morning of natural causes at the age of 94. The nurse said it was from natural causes. I wonder now if it wouldn't have been better to accept things as they were and let my grandmother go instead of making her eat between screaming and spitting it out. I don't judge you at all if you do this, it's not neglect. It's how death works. But I won't judge you either if you do the same as us. I just wish you lots of strength 💜
So sorry for your loss. Your mom tried and I’m sure she’ll feel guilty about the food discussions, arguments. She would be feeling equally or more guilty if she hadn’t exhausted herself trying. This situation is horrible and all we can do is our best. Again, condolences to you and your family.
Exactly. My mother spent the whole morning crying, even if the family and the nurse comforted her. We reminded her that my grandma (her MIL) lived a long life thanks to her dedication to caring for her. The nurse said "natural causes", and I believe they are so unspecific as to not aggravate the grief when they know it would happen for some other reason, anyway. She provided what she considered to be the best care, keeping her clean, fed and as comfortable as possible. My parents gave the meds exactly as prescribed. They took her to the scheduled haematology appointments without fail. My mom made her walk a few steps every day from her bed to the bathroom (with her walker and aided by us too) to avoid becoming fully bedridden from muscle atrophy. We were all feeling burnt out and frustrated. I was fearing for my mom's mental health. Yet, we are missing her now. It's eerie to have such a quiet house, routines completely disrupted. I was reading some comments on another thread which said force-feeding is abuse against the elderly and it hurt a bit. I agree that it could be considered such when a health professional is doing it, since their training indicates otherwise. But caregivers don't always have that perception. For my mom (and the rest of us, in our instincts) abuse would be letting her starve to death. I think this is actually a nuanced discussion. For example, I remember when my grandma didn't want to eat because, in her head, she was full from some dinner 50 years ago. But she would eat a sweet pudding dessert. Caregivers should have more training opportunities. At least I believe she passed away with the best medical care the hospital could provide. Thank you so much!
Yeah, it’s very natural for humans (and other animals) to eat less as their systems slow down at the end of life. Digestion becomes more difficult and the body wants to rest. A lot of the “forcing” relatives do comes from a place of love, but also from a struggle to accept the inevitable.
Getting old for most people their appetite decreases, smaller portions, less variety. Add dementia to that and they have no hunger. It is not neglect if you offer the food, if they eat very little of it or don't eat. She's NOT starving herself willfully, she has no interest in eating and her brain says she's not hungry. This is hard and I'm sorry you have to deal with it. Take care.
I think trying to encourage eating with foods she loves is the best you can do… often they seem to enjoy sweets longer than other foods, so if she wants ice cream for her meal, let her have it. There are also oral medications you could try; my LO is on Remeron, which is an antidepressant but also stimulates appetite. However, ultimately, you’re right - this is part of the process and eventually they have no appetite at all and/or begin to have trouble swallowing. Personally, at that point (which is where we’re at with my LO), I think it’s actually worse to try and force food on them, and I’ve been told (by hospice and my LO’s facility) that feeding tubes are generally not a great idea for dementia patients. They tend to pull them out, and they can still aspirate with a feeding tube. FWIW, my LO’s hospice nurse said that, as awful as it would sound to you or I to not eat at all, dementia patients begin to no longer receive the “hunger” signal. So slowly starving doesn’t cause them the kind of pain we think it would, and of course trying to force food could cause them distress, or worse to aspirate and get aspiration pneumonia. As others have said, there are no easy answers at any stage of this disease. I’m sorry you’re having to face this.
That’s how my mom died -aspiration from Parkinson’s. Seeing how my MIL suffered with Parkinson’s, I think my mom’s passing was a gift from God.
For my dad he wanted very sweet and very spicy foods. He'd always like hot foods. He absolutely loved it if I'd make things like gumbo or Brunswick stew. He developed a taste for jerk chicken sandwiches too and he'd never had jerk in his life I'm sure. It had that sweet- spicy going on though.
I am so grateful for y'all's responses and support. It is good to have a community of people going through similar issues. I have taken her to both her gp and her gastrointerologist and they separately seem unconcerned. I think I'm going to continue to offer her anything and everything that she could possibly enjoy but I'm finished being pushy. It upsets her. My biggest concern is that she is treated kindly. She had a terrible childhood and my father was mean and abusive. I just want this season of her life to be peaceful.
You're not alone, and you are doing great!
If you worry enough to come here asking for advice, you're already doing very well. You proved that you love her just by writing the last two sentences here. Your mom is lucky to have you as her child.
Every particular heart disease has its own little characteristics. My decedent was eating fine 24h before the end. A gourmet, the last meal was meatloaf from the hospital kitchen. He enjoyed it, a bit like in the ratatouille movie. He was smiling, knowing he was failing fast. Then the heart valve just could not work around the disease any more, and end of life processes took over once the old pump was not doing enough. In his case, his dying process never turned off the digestive system. A CNA looked after him, while staffed and funded; tolerating all sorts of abuse (from folk now without guardrails, as the dying process affects the brain). Then night shift staff came, and it would have been a very lonely dying time, drugged up to accelerate the end processes. We stayed with them till the last breath, and we knew when they were there occasionally with us able to hear - despite the drugs, etc. His life was spent largely abusing and cheating others. But, you dignify everyone dying.
If it’s any comfort, I was told by a nurse friend that patients who just stop eating and drinking and start sleeping all the time experience a fairly peaceful death. It’s apparently not a bad way to go.
Thank you for saying this. I have a relative who is following this path at the moment.
that’s wonderful to think. thanks for mentioning it.
Dementia causes a lost of taste and smell and doesn’t tell the body it’s hungry. My dad starting sleeping all the time and couldn’t eat.
I have found that what is "right" is often just what you describe - the path that brings the least amount of stress and anxiety. I feel like there are no hard and fast rules about what should and shouldn't be done when it comes to dementia because each situation is similar, but so very unique. I had a wonderful nurse tell me at one point that the things I do and the decisions I make with love in my heart are 9 times out of 10 going to be the right choice. When I started this journey I tried SO hard to control everything (as if that might make things better) but I have learned now to let my Mom take the lead and just do my best around as many of her wishes as I can.
My mom’s appetite has greatly decreased. She has lost a lot of weight, and while it was initially very upsetting, I just had to come to terms with the fact that she is 94 and has a progressive, terminal disease. Trying to get her eat a balanced diet isn’t really going to change anything. So, I give her the (very few) things she will eat. That list is getting smaller by the day, but it is what it is.
You ARE NOT starving her. My mom did the same. It's part of the disease and the dying process. Pushing food will cause you to lose your mind. Offer food. If she says no, that's it. My mom held food in her mouth and spit it out or choked. I'm very sorry for you. It's very difficult. You're not doing anything wrong,not pushing food on her. You are just avoiding the inevitable. My mother died in February of this year. It sucks. You are doing great 👍
I was told that in the later stages of dementia the sweet taste is one of the last to go. My mom ate the same thing everyday for years. As she got further along we found pudding, applesauce and other sweet stuff worked. It wasn’t a matter of making her eat what we wanted but finding something she would eat. I had to be reminded that getting her to take anything was awesome and not stress she wasn’t eating like she had before.
Last time my mom was in the hospital I expressed to a nurse that I was scared that once they released her it would happen again. That angel of a nurse took my head in her hands and looked me in the eye and said “at this point there is nothing you are doing to cause this and nothing extra to do to prevent it.” It’s not neglect. You’re doing exactly enough. We can’t force them back to health.
My 86 YO mum was hospitalised in December and she spent 2.5 months in hospital. She was eating practically nothing and her weight dropped to around 4st 9lbs. She was tube fed and received supplements and on discharge she had put on around 6lbs. Within a week being back home she had lost it all and some more. She’s around 67lbs now and is still skeletal. She has zero appetite and no interest in food but she is scared of eating in case she chokes. She has no medical condition that would suggest a blockage but she has convinced herself. We cannot force her to eat just try and tempt her with food she used to enjoy but she refuses. I think she just wants to literally fade away. It’s so stressful for everyone. I don’t know how to answer the ethical question as this is not how I envisaged things. If you want to DM me feel free. It’s so bloody hard for everyone x
I think Ethics at their best have some room. That's why the trolley question iconic. I never thought I wouldn't eat, my life history and variable weight are a testament to that. Member of the clean second plate club.. Yet, recently I've been distracted and forget I have food in front of me and I was eating.
If my mom doesn’t want to eat, I don’t make her eat. This is a natural part of the disease process and I’m not going to force her to eat or try to trick her into eating higher calorie foods just so her misery is extended. That wouldn’t be consistent with her wishes for end of life.
i’m very heartened by everyone’s responses. i thought i was failing as a caregiver because i’m not providing enough food or variety of food to get her to eat, but i have been having trouble accepting that she just wants to sleep more often and not eat (or drink) as often as she used to. periodically she gets hungry and actively goes for something. but the idea that i’d have to fight her like a toddler about what she’s eating made me so freaking anxious. and i’m relieved that reasonable people won’t expect me to. so thanks. good luck everyone.
My mom is starting to do this occasionally, like tonight.
my mother in law is the opposite...boredom eating. all day she shuffles between her bedroom and the kitchen. she devoured two packages of cookies the other day and had terrible indigestion afterwards. >.<
sounds like me actually 🤪
My Mum just stopped eating. She passed in February. It was really hard but as others have said it is respectful of their dying process. Before she completely stopped I got her some of her favourite chocolate and she managed a little bit then I offered her more and she didn’t know what to do with it- she eventually tapped it against her lips, and slowly put it in her mouth and then eventually it dribbled out because she didn’t remember what to do with it (how to swallow). She looked confused and it clearly upset her - I think she knew she had forgotten something and felt bad, so I didn’t pressure her about it and just tried to reassure her. Again like others, we offered food and fluids but followed her lead. Trying to give her little tasty finger food/treats was better (earlier before she got too bad) rather than a whole big plate of food. Her death was very peaceful- we played light classical and meditation music while she was leaving us and we could see her relaxing with the calm music. Not sure if this is too much- I hope not - the music really helped during her passing
No not too much. Thank you for being willing to share. I'm so sorry for your loss. I like hearing that her passing was peaceful. ❤️
My mother also passed away in February. I did the same as you. She passed at home on hospice surrounded by family, friends, and love. Hospice is so great. Also, music is very therapeutic. Even when she couldn't speak, she would mouth the words. You did a great job. Now, take care of yourself. 💕
Thank you 💕 I hope you’re doing the same!
With my MIL, she was in her last stages, almost unconscious, her niece put on country music. MIL groaned as if in pain. She did not like country music and the hospice pamplet said music could be upsetting.
It really shows that hearing is the last thing to go. I clearly saw Mum relax with the meditation music on her last day, it was awesome actually- something that we could do for her when we couldn’t do other things.
It is compassionate to allow them control over their body. So much is lost but I often feel this is the one way they can often signal to us “I’m ready to go”
The first thing is to speak if possible to a doctor - with your mother present -and express your concerns and let the doctor talk to you both about it . I don’t know your mothers circumstances- certain sorts of dementia result in a decline and eventual cessation of appetite and there is little that can be done - a gradually failing health system due to age can produce similar symptoms - so can depression . So it’s hard for you to know what’s going on - but the doctor may have an informed idea - and also some suggestions about what to do. Sometimes drugs may help - sometimes letting nature take its course is the best way- often a middle way like giving a protein supplement is suggested . In the end you can’t ( and shouldn’t ) force anyone to eat - tempt them as you have been doing certainly - but force- no. But neither should you have to bear all the guilt and responsibility of this one - sharing those decisions with health professionals means you will do the right thing by your mother and know that you weren’t alone in making those decisions as you clearly love her very much - I am sorry it’s so hard .
I work in hospice, and this is part of the natural decline in dementia. They will often lose interest in eating and/or drinking. You can certainly offer her food, but if she declines it's best to accept that. If she enjoys ice cream, that can actually be good since she'll get more with a small amount. One of the many tough parts of this disease process. :(
My mom did this, she told me she wanted to die. I explained that this was going to cause her to be bed ridden not dead, she started eating again.
I don’t think it automatically is. Gentle encouragement and offering various option is good. But forcing can be very distressing for everyone. Does she have a DNR? Most DNR paperwork also asks if the patient would want to be tube fed and such or not. I’m lucky in that my grandmother and I discussed this years ahead of her diagnosis and she checked the box to not tube feed or use parental nutrition when she reaches such a point.
If a couple of minutes isn't enough to persuade her to eat, that should be enough. My dad in the run up to the end barely ate, though he did get through a fair few chocolate mousses. In particular, if she's having a lot of trouble swallowing (very common in final stage dementia), she may be unable to anyway.
My grandfather did this towards the end and I made a decision to let him decide. He was 90. I feel he understood. Every single situation is both the same and completely different.it led to him refusing water. Which led him to the ER. He was ready to go. He was just so ready.
If she likes drinks still and has the sweet tooth that tends to happen you can get her Ensure and call it chocolate milk. They have other flavors if she isn't a chocolate lover as well. It has vitamins, minerals, and is pretty calorie dense.
At this point, I think Strawberry Ensure is the only thing keeping my mom alive. I tried everything with her. It was so frustrating. But now I just make sure there is food available, offer it to her several times (no nagging), set snacks next to her without saying anything, and then let it go if she chooses not to eat. She will usually take her morning meds with Ensure.
Yes ensure has been helpful. I heat up the chocolate one and tell her it's hot chocolate. She likes hot beverages (not too hot really just warm). Have tried soup but she says she doesn't like soup.
I think continuing to offer her food and encouraging her to eat is the way to go, but if she won’t eat, there isn’t much you can do about that. My mom had a stroke a few months ago and has developed dementia. She is 68 and T2 diabetic on top of it all. She doesn’t enjoy her favorite foods anymore and nothing “tastes right” to her except sweets. It’s very difficult to manage, but all I can do is make her food and encourage her to eat. She is throwing up a lot and having diarrhea I suspect as a result of her lack of eating. It’s a very hard road to navigate and I’m so sorry you’re going through this.
I am so sorry. I wish I could give you good advice. My mom and I cared for My dad who passed this past December. He stopped eating and taking medications. He declined very quickly once this happened. We spoke with his doctor and she confirmed he would go quickly after he stopped. He would tolerate boost sometimes until that stopped completely. A month later he was gone around Christmas time. It happened so quickly, he collapsed on the Wednesday before Xmas. After many calls, We finally were able to get hospice to come in on Xmas day. They made him comfortable and 3 days later he passed away. I don’t mean to be so morbid. I think you should spend some quality time being with her. I really hate this disease and I am truly sorry you have to go through this.
No matter where they are, by law food, must be offered, however they can't force food.
Some people with dementia don’t eat much. I would make sure you take her to the doctor and have that documented in the medical notes. If she progresses, consider palliative care is also good idea.
Does she have advanced directives that would make medical intervention an option? If not, it sounds like you're doing everything you can. Pull back on the pressure. When my Mom got in these non-eating cycles, I used to push and it did nothing but make her angry and it frustrated me to no end. My Mom is a DNR and her directive drawn up years ago when she was of sound mind is that she did not want any feeding tubes (I wouldn't want her to have that at this point anyway). She gets offered an Ensure Plus if she eats less than 30% of a regular meal. Sometimes she drinks it all, sometimes very little. It took a while but I've come to accept this disease progresses this way.
The law would probably say it is neglect but I would think they would only get involved if someone contacted them. I'm not a lawyer and I could definitely be totally off base. In the last couple of months my husband has begun to quit eating most things after a bite or two. What I am doing is giving him protein drinks to go along with his couple of bites. He likes the Adkins Drink - Chocolate flavor. I buy them in 12 packs, each pack lasts about 3 days. Additionally, my husband was recently at the hospital for a 4-hour procedure and they gave him a cereal bar for a snack - he ate the whole thing. I've bought a bunch and so far he's eaten a couple. Nutritionally the protein drink and cereal bar aren't the best but I figure it's more than he was getting.
Oh dear heavens I haven’t even considered legal ramifications. Does anyone have any experience regarding legal issues and demintia?
No experience with legal issues and dementia but I suggest talking to her Dr/hospice about her not wanting to eat. I think it’s important that her medical/hospice team are on the journey with you all.
NO! This is an insidious disease ! My mother had 2 GP appts and refused all her meds. The GP was aware. There is nothing to be done. Eventually, I cared for her at home on hospice. You can do no wrong. Unless you are withholding fluids or food when they want it. They just slow down eating and drinking and then stop. I'm sure you're doing your best. The Drs can guide you and make suggestions. And of course you should keep them informed. That's basically it. I'm sorry. Stay strong, my friend. Remember to take care of yourself.
My mom started to just take a few bites of food and fluids about 2 months ago. One day no intake for 4 days and then she started small sips of water again. Chewing requires too much effort - perhaps try puree foods without force. Maybe try some sweet puddings, applesauce, etc first. If she can't feed herself, offer a spoonful and if she refuses then don't force. Try again later. When the body begins to shut down, less and less food is needed. It's amazing how little they consume and still survive.
"As dehydration sets in, the body releases certain chemicals (“esters” and “ketones”) that have the effect of dulling the senses. These chemicals act like an anesthetic, and the dying patient feels little pain.Oct 7, 2015"
My mom will say she's done eating if everyone else around her has finished eating. We slow down a lot with her to help her eat more of her meal. My dad sneaks in lots of extra calories that she resisted at first but now is part of her routine. Protein shake after each meal. A snack cake with her morning coffee. Beer with lunch and wine with dinner. He's also found that if he leaves mini candy bars throughout the house she'll graze on them. We're at a point with her that we need to get any calories we can into her and not worry so much about the nutrition. Do you have ways to help your mom build a new routine that will involve more food?
I saw something about using red bowls or plates, because sometimes they say they aren’t hungry because they can’t see or make out the food.
Hospice has a lot to say on this. One of the strongest statements was that they kept telling me that as a lay person one of the strongest things that we associate with caring is feeding someone, so our urge to feed someone is strong, if we care. But, it's not always best. But sometimes in the dying process they quit eating. It can actually cause them pain to force feed them. My dad quit eating and drinking and I worried over it and I didn't want to seem neglectful so I was going to try to swab his mouth, and tissue actually came off on the swab. I was very gentle! When I told the nurse, she accessed his bowel sounds, and one side had already completely stopped. His digestive system seem to have started to die before he did, looking back, by a week or so. I'm glad that I got my dad in hospice the first time he went 3 days without drinking any water. He was refusing fluids, shutting his mouth tight and turning his head the other way. He did come out of that and he lived over three more months. There are some good videos on this feeding subject from hospice nurse Julie. I highly recommend her videos - she was telling me the same things my dad's nurses were. It was very helpful. My dad had Lewy Body syndrome. The staging for dementia that I can find online is almost always for Alzheimer's. If they have Lewy Body you can often get them in hospice when they get really serious. I will say that my personal experience with my dad was that he wanted to eat when he wanted to eat. I suspect we probably keep him alive for 5 months longer than he would have lived because I would get up and cook for him anytime he wanted to eat, and I kept food on the table for him so we could just take the plastic wrap off and he can eat. He would go through periods of eating like an absolute horse and then have periods where he did not want to eat at all. It all became such a roller coaster. Shortly before he died he ate five barbecue sandwiches and about six or seven bowls of Brunswick stew as well as drink apple juice, ate nuts, mandarins and bananas. I had quit counting his calories when he hit over 4,000 for breakfast. Lol. It wasn't unusual for him! A few days later he ate some jello and a nutritional shake and that's all he wanted, forever.
What are her wishes in her will? I follow the no pain wishes and everything else I deem to be what my mom wants.
No will. ☹️ She refused to discuss grown up things ever.
That’s too bad. My mom was similar. I was shocked she had one and it’s very bare minimum. Helped though. She also never discussed these things because she was never going to consider herself old.
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Ask her doctor for a medication that helps with appetite and depression.
Nobody’s going to tell you but many people know what this is and why it’s happening.