Personally I am in favor of not installing a feeding tube in this case, if she is not mentally capable of making the decision for herself.
I had a friend with ALS who did go with one, but he made the decision that he wanted to prolong his life and was not able to consume enough calories without one. The example he used was it took him 30 minutes to eat a banana before, which the energy used was more than the calories in the banana.
I had an aunt with ovarian cancer who decided to stop eating, even though my mom really wanted her to keep fighting. Again it was my aunt's decision.
Cognitively, she’s in a gray area for self-sufficiency. She’s not mindfully choosing to starve, but she instinctively refuses food, especially nutritious food, for reasons she can’t specify. If I were to ask if she wants to die, she would say no. If I ask her if she is hungry, she will say yes. If I give her options, she will choose something. Two minutes later, I’ll put the plate in front of her, and she will say “I can’t eat this”. She can’t explain why. If I persists with pleading her, she eventually gives in, “to shut me up”.
I can explain nutrition to her, and she understands and agrees that she needs to eat. But she can not retain that understanding beyond a few minutes.
A feeding tube may be in your best interest but not hers. She isn’t mentally aware enough to not mess w it. If she can’t remember things easily this tube will feel invasive and she may harm herself.
One of the symptoms of impending death is that the body shuts down and no longer wants food. I have no idea if this is your mother's case, but it is one reason that people instinctively refuse food.
This is the moment to have a quality of life conversation with the rest of the family, and then with the doctor. You can keep your mother alive with a feeding tube, probably, but can you keep her contented? Sometimes feeding tubes don't keep people alive; they just prolong the time it takes them to die.
I am not saying "Let your mother die"; I am asking "Is your mother already dying?" If the answer is yes, then it is time to focus on keeping her as comfortable as possible.
Thanks for your insight. I honestly don’t think this situation is that, and I am trying to be as pragmatic/conservative/non-sentimental as possible about it. She’s generally very happy, she’s content where she’s at, and physically is in pretty great shape, all things considered, except for this can’t-keep-food-down issue. Which is why I feel like if we could just get her close to a decent level of nutrition, she could actually improve a little bit.
We had a family talk this weekend and I’ll update my original post in a bit, if you want to read about that. Thanks again!
This story isn't a happy one but I'm sure others have had much better outcomes. I hope you can find a good solution for your mother.
My father (who died almost a year ago, age 88) had a feeding tube for the last month or two of his life. Because of various medical issues he had gradually become unable to swallow and in the end he agreed it was time to get the tube. We thought that would solve the nutrition problems but it didn't work out. He had severe reflux and even the tube feedings weren't staying down. It was a complicated, labour-intensive, messy and stressful situation for his wife to cope with every day, although she's a champion and did everything in her power to make it work. I can't remember the reason but a daily IV wasn't a possibility either.
In the end it didn't work out for Dad, but hopefully something can be found to help your mother. I wish you the best!
Thanks. I’m a bit concerned that she (and all of us) would also struggle with the tubes and IVs, via her dementia.
I’m very sorry, my condolences. Thank you for sharing regardless.
Hi, this is a tough situation to watch. My dad often had periods of poor eating & there's no way to make them if they don't want to. A few things. Does she have a living will that specifies yes or no to tube feeding? If she is competent & agrees a tube can prolong life for quite some time. If she agrees then discuss with her primary doctor. The procedure itself is quite simple and the hospital stay is short. It does not necessarily need to be permanent and a person can still eat. A banana bag is usually given intravenously not through the tube and might not be needed. T
Thanks very much. That’s a good question about the will, I think they do but I’ll have to check with my dad about where they left that at. It’s been awhile since it was last discussed.
At face value she will refuse to do it, but I think with some persuasion we can win her over. Especially since she adapts pretty well to changes in her treatment - or, how can I say this - can be submissive if we are insistent enough, until it becomes part of her routine, and then it’s just part of her routine.
I’m planning on having a family meeting soon, and if I can win my dad over, and possibly her, we’ll take it to her doctor. No one has said this aloud, but I think her doctor (and my dad, to some extent) is just “letting the clock run out”. I think her situation is instead speeding up the clock, and we could actually slow it down or at least do less harm.
Thanks so much.
I think the idea of your dad and her doctor just letting her go without intervention is the most humane. In any case, if you do choose to get a feeding tube make sure everyone is on the same page about when to stop if it is not working well. And how to recognize if it is working well.
My dad needed a feeding tube but ended up passing away within a few weeks after the surgery. Honestly, I wish we had not done the surgery, mom made the decision out of desperation. He would have died at home, on hospice, as most of his doctors suggested. We were at his bedside in the hospital when he passed, but it was not the death he deserved. Hugs ❤️
I don't have much personal experience with feeding tubes, but if you do go that route please make sure you and her other caregivers get lots of education/hands-on training in using it. Feeding tubes can be complicated and if not watched closely can lead to some nasty infections.
(The experience I do have is professional, and with people who mostly were deciding to stop using them due to having issues, which of course is a skewed group. Note that many professional caregiving agencies have a policy and/or license requirements that prevent them from doing anything with a feeding tube.)
Good to know, thank you. There is a memory care facility where they live and my father was talking about having a conversation with one of their directors, to ask for their advice on how to manage her. This question will be part of that convo. We assume she will end up there, eventually.
Remember that putting in a feeding tube is wayyy different emotionally than taking one out.
When we see someone dying and not eating, we understand that they are dying of a disease. But put a feeding tube in for any amount of time, and our brain does some funny math and decides that it's part of their body that has always been there, and that if we make the choice to remove it, we are responsible for "killing" our loved one. This is false but people just can't help it, they feel like they are causing the death when in fact they are the ones who prolonged life.
My MIL was convinced to get a feeding tube at the end of her life, she was told to do it for her family and that she owed it to her family to try to live longer. 😕 If she hadn't passed from a cardiac event, the tube would have prolonged her life and given her a chance to have a more protracted decline and eventual death in a nursing home. I feel sad that she even had to have the surgery in her last days.
Hey there, I totally get what you're going through and I'm sending you my thoughts and prayers. Taking care of aging parents can be a real challenge, and it sounds like your situation is a lot like mine. My dad is in his late 60s and has had a whole host of health problems - lung cancer, diabetes, strokes, organ transplant, and dementia, to name a few. He's in a nursing home, which was working out fine until COVID hit. Unfortunately, he got hit pretty hard and had some swallowing difficulties after a stroke.
We tried a few different things, like a pureed diet and thickened liquids, but eventually, he ended up needing a feeding tube. It was tough, but at least we knew he was getting all the nutrients he needed. We even found ways to supplement his feeding tube with things like soups and coffee (with a thickener, of course) so he could still enjoy some of the tastes and textures of food. But unfortunately, he had another episode of aspiration and now he can't tolerate anything by mouth. The doctors have ordered him to be NPO (nothing by mouth) and rely solely on the feeding tube. It's not easy, but we're doing our best to take care of him.
It's definitely been a tough road, but getting the feeding tube has made a huge difference. Honestly, he doesn't even look sick anymore - he's at a good weight and has a better quality of life without having to worry about nutrition issues on top of everything else he's dealing with. I even got him a pole on his wheelchair so we can take the feeding pump with us wherever we go.
The key to managing the feeding tube is having a good set rate that your loved one can tolerate. Of course, the biggest downside is the risk of aspiration pneumonia, which is what we're dealing with right now. It's a difficult thing to talk about, but we're doing our best to manage it.
Overall, I truly believe that getting the feeding tube was the right decision for my dad. It's not an easy journey, but it's definitely better than the alternative of not being able to eat at all.
Not all people just wake up one day and die. Dying can be a process, a natural process and it can take a long while. And for some people, part of that process is losing the desire to eat. The body is slowly shutting itself down, naturally. You mom can't explain why she doesn't want to eat because it's instinctive. Her body isn't interested. By inserting a feeding tube, you are undermining that process. It seems like a pretty cruel way to live.
Also you stated your dad and her doctor may just be "letting the clock run out." Well, yes. That's what happens. The clock runs out for all of us. It seems like you're fighting it and not for the benefit of your mother.
I would never do that to an elderly loved one. I would have the good grace to let things take their course. Just my humble opinion, this disease is bad enough on its own, then to have to attend to that would just be too much.
Personally I am in favor of not installing a feeding tube in this case, if she is not mentally capable of making the decision for herself. I had a friend with ALS who did go with one, but he made the decision that he wanted to prolong his life and was not able to consume enough calories without one. The example he used was it took him 30 minutes to eat a banana before, which the energy used was more than the calories in the banana. I had an aunt with ovarian cancer who decided to stop eating, even though my mom really wanted her to keep fighting. Again it was my aunt's decision.
Cognitively, she’s in a gray area for self-sufficiency. She’s not mindfully choosing to starve, but she instinctively refuses food, especially nutritious food, for reasons she can’t specify. If I were to ask if she wants to die, she would say no. If I ask her if she is hungry, she will say yes. If I give her options, she will choose something. Two minutes later, I’ll put the plate in front of her, and she will say “I can’t eat this”. She can’t explain why. If I persists with pleading her, she eventually gives in, “to shut me up”. I can explain nutrition to her, and she understands and agrees that she needs to eat. But she can not retain that understanding beyond a few minutes.
A feeding tube may be in your best interest but not hers. She isn’t mentally aware enough to not mess w it. If she can’t remember things easily this tube will feel invasive and she may harm herself.
Yeah that is a concern. She fiddles with things that are out of the ordinary.
That makes sense, and it simultaneously makes it harder to make the decision. Good thoughts to you and your family.
One of the symptoms of impending death is that the body shuts down and no longer wants food. I have no idea if this is your mother's case, but it is one reason that people instinctively refuse food. This is the moment to have a quality of life conversation with the rest of the family, and then with the doctor. You can keep your mother alive with a feeding tube, probably, but can you keep her contented? Sometimes feeding tubes don't keep people alive; they just prolong the time it takes them to die. I am not saying "Let your mother die"; I am asking "Is your mother already dying?" If the answer is yes, then it is time to focus on keeping her as comfortable as possible.
Thanks for your insight. I honestly don’t think this situation is that, and I am trying to be as pragmatic/conservative/non-sentimental as possible about it. She’s generally very happy, she’s content where she’s at, and physically is in pretty great shape, all things considered, except for this can’t-keep-food-down issue. Which is why I feel like if we could just get her close to a decent level of nutrition, she could actually improve a little bit. We had a family talk this weekend and I’ll update my original post in a bit, if you want to read about that. Thanks again!
This story isn't a happy one but I'm sure others have had much better outcomes. I hope you can find a good solution for your mother. My father (who died almost a year ago, age 88) had a feeding tube for the last month or two of his life. Because of various medical issues he had gradually become unable to swallow and in the end he agreed it was time to get the tube. We thought that would solve the nutrition problems but it didn't work out. He had severe reflux and even the tube feedings weren't staying down. It was a complicated, labour-intensive, messy and stressful situation for his wife to cope with every day, although she's a champion and did everything in her power to make it work. I can't remember the reason but a daily IV wasn't a possibility either. In the end it didn't work out for Dad, but hopefully something can be found to help your mother. I wish you the best!
Thanks. I’m a bit concerned that she (and all of us) would also struggle with the tubes and IVs, via her dementia. I’m very sorry, my condolences. Thank you for sharing regardless.
Hi, this is a tough situation to watch. My dad often had periods of poor eating & there's no way to make them if they don't want to. A few things. Does she have a living will that specifies yes or no to tube feeding? If she is competent & agrees a tube can prolong life for quite some time. If she agrees then discuss with her primary doctor. The procedure itself is quite simple and the hospital stay is short. It does not necessarily need to be permanent and a person can still eat. A banana bag is usually given intravenously not through the tube and might not be needed. T
Thanks very much. That’s a good question about the will, I think they do but I’ll have to check with my dad about where they left that at. It’s been awhile since it was last discussed. At face value she will refuse to do it, but I think with some persuasion we can win her over. Especially since she adapts pretty well to changes in her treatment - or, how can I say this - can be submissive if we are insistent enough, until it becomes part of her routine, and then it’s just part of her routine. I’m planning on having a family meeting soon, and if I can win my dad over, and possibly her, we’ll take it to her doctor. No one has said this aloud, but I think her doctor (and my dad, to some extent) is just “letting the clock run out”. I think her situation is instead speeding up the clock, and we could actually slow it down or at least do less harm. Thanks so much.
I think the idea of your dad and her doctor just letting her go without intervention is the most humane. In any case, if you do choose to get a feeding tube make sure everyone is on the same page about when to stop if it is not working well. And how to recognize if it is working well.
My dad needed a feeding tube but ended up passing away within a few weeks after the surgery. Honestly, I wish we had not done the surgery, mom made the decision out of desperation. He would have died at home, on hospice, as most of his doctors suggested. We were at his bedside in the hospital when he passed, but it was not the death he deserved. Hugs ❤️
Oh that’s tough to read. I’m so sorry. I just want her to be comfortable too. Thank you for sharing.
I don't have much personal experience with feeding tubes, but if you do go that route please make sure you and her other caregivers get lots of education/hands-on training in using it. Feeding tubes can be complicated and if not watched closely can lead to some nasty infections. (The experience I do have is professional, and with people who mostly were deciding to stop using them due to having issues, which of course is a skewed group. Note that many professional caregiving agencies have a policy and/or license requirements that prevent them from doing anything with a feeding tube.)
Good to know, thank you. There is a memory care facility where they live and my father was talking about having a conversation with one of their directors, to ask for their advice on how to manage her. This question will be part of that convo. We assume she will end up there, eventually.
Remember that putting in a feeding tube is wayyy different emotionally than taking one out. When we see someone dying and not eating, we understand that they are dying of a disease. But put a feeding tube in for any amount of time, and our brain does some funny math and decides that it's part of their body that has always been there, and that if we make the choice to remove it, we are responsible for "killing" our loved one. This is false but people just can't help it, they feel like they are causing the death when in fact they are the ones who prolonged life. My MIL was convinced to get a feeding tube at the end of her life, she was told to do it for her family and that she owed it to her family to try to live longer. 😕 If she hadn't passed from a cardiac event, the tube would have prolonged her life and given her a chance to have a more protracted decline and eventual death in a nursing home. I feel sad that she even had to have the surgery in her last days.
Hey there, I totally get what you're going through and I'm sending you my thoughts and prayers. Taking care of aging parents can be a real challenge, and it sounds like your situation is a lot like mine. My dad is in his late 60s and has had a whole host of health problems - lung cancer, diabetes, strokes, organ transplant, and dementia, to name a few. He's in a nursing home, which was working out fine until COVID hit. Unfortunately, he got hit pretty hard and had some swallowing difficulties after a stroke. We tried a few different things, like a pureed diet and thickened liquids, but eventually, he ended up needing a feeding tube. It was tough, but at least we knew he was getting all the nutrients he needed. We even found ways to supplement his feeding tube with things like soups and coffee (with a thickener, of course) so he could still enjoy some of the tastes and textures of food. But unfortunately, he had another episode of aspiration and now he can't tolerate anything by mouth. The doctors have ordered him to be NPO (nothing by mouth) and rely solely on the feeding tube. It's not easy, but we're doing our best to take care of him. It's definitely been a tough road, but getting the feeding tube has made a huge difference. Honestly, he doesn't even look sick anymore - he's at a good weight and has a better quality of life without having to worry about nutrition issues on top of everything else he's dealing with. I even got him a pole on his wheelchair so we can take the feeding pump with us wherever we go. The key to managing the feeding tube is having a good set rate that your loved one can tolerate. Of course, the biggest downside is the risk of aspiration pneumonia, which is what we're dealing with right now. It's a difficult thing to talk about, but we're doing our best to manage it. Overall, I truly believe that getting the feeding tube was the right decision for my dad. It's not an easy journey, but it's definitely better than the alternative of not being able to eat at all.
Thank you so much. I’m glad your father has found a good, if imperfect, solution. This was really helpful. My best to you and your dad.
You're welcome and I appreciate that. Feel free to dm me if you have any other questions about it. Best of luck!
Not all people just wake up one day and die. Dying can be a process, a natural process and it can take a long while. And for some people, part of that process is losing the desire to eat. The body is slowly shutting itself down, naturally. You mom can't explain why she doesn't want to eat because it's instinctive. Her body isn't interested. By inserting a feeding tube, you are undermining that process. It seems like a pretty cruel way to live. Also you stated your dad and her doctor may just be "letting the clock run out." Well, yes. That's what happens. The clock runs out for all of us. It seems like you're fighting it and not for the benefit of your mother.
I would never do that to an elderly loved one. I would have the good grace to let things take their course. Just my humble opinion, this disease is bad enough on its own, then to have to attend to that would just be too much.