So, your loved one has advanced cancer, is not eating, and you want to help.
First, please read part one. You must understand that what you think is a loss of appetite is more than that - it's a true physical inability to eat. It's a symptom and a complication of disease and not something we control with willpower. No matter how much you beg and cajole, eating regular, normal meals is a medical impossibility and will only cause more stress. You might as well be begging somebody with a broken femur to get up and run a marathon.
I also want to make clear that I am not talking about the common loss of appetite that happens in an early stage cancer patient due to chemo, surgery, or as a medication side effect. Depression and some medications can also cause a lack of appetite in early stage cancer patients, and so appropriate diagnosis and medications may help. Any lack of appetite should be discussed with a doctor.
I am talking about something very different. I am talking about what happens to an end-stage, terminal cancer patient - anorexia-cachexia. This is a wasting condition where muscle is lost, metabolism is revved up yet food desire disappears, and it happens because of their disease, not because of treatment. Those who have cancer anorexia-cachexia experience it even when we are off treatment. Mine started before I started the new chemo, when the cancer (unbeknownst to me) began spreading again but when I was on the same therapy I'd been on for 2 years.
So what can you, as a caretaker, do to help? I will tell you what has worked for my home, and you can adapt this for yourself.
Communication: Don't ask the patient to make food decisions.
I do not want to be asked what I feel like eating, because the answer is nothing. My husband used to say "What do you want for breakfast?" or "Do you want eggs or pancakes?" "Do you want soup for dinner?" I truly cannot answer that question because I don't want anything. And not only do I not want it - it makes me angry to think about. Angry, frustrated, annoyed....You might as well ask me, "Do you want to be stabbed in the lung or the liver?" Neither!
I truly cannot make food decisions at this point. I told my husband that he is not allowed to talk to me about food. Bring me food or don't, cook or don't, but leave me out of it. I won't acknowledge that question and he has stopped. All decisions about food are his. I think I eat a tiny bit more since he stopped asking me and just started giving it to me.
Shop: Put yourself in the role of decision maker.
For husbands, or at least for mine, this may be something they aren't used to. I shopped and I cooked. Now I am beyond shopping for food. I used to go to Whole Foods and buy all the things I'd love in the hopes I could eat, yet it would rot in the fridge. Now, I don't even want to see it, my stomach roils just thinking about food. So, take it upon yourself to shop for your loved one. Try to keep the things you know she'll eat on hand, and keep the things you hope she'll eat around too. Don't worry so much about nutrition as much as intake. If all I can eat is cake or 3 musketeers mini-bars, well, make sure I have cake or candy in the house. Don't substitute what you believe is healthy - it's not going to be healthy if we can't tolerate eating it.
Take Control of Food for your Loved One: Bring foods every few hours.
While I won't make a food decision, I also don't want to be on my own with food intake because frankly, I wouldn't eat. At all. I know mentally I have to eat but cannot tolerate the thought or the pain that comes later, and most food sounds disgusting now - so I need help.
Despite the fact that everything but candy sounds awful, if something is put in front of me at dinner, I sometimes eat it.
I have no appetite and won't ask for it, but if a cup of hot soup, or a cup of tea and cookie is placed in front of me on a cold day, I might sip it. Maybe just a sip ... but it's something. If a tiny plate of fruit and cheese is placed in front of me at lunch, I might nibble at it. (Tiny being a few grapes and a tablespoon of cheese). I certainly won't get it myself and if you ask me if I want it, the answer is an unequivocal no. If it magically appears without questions or expectations, maybe I'd try. Maybe I wouldn't. But it is better than talking about it, which I am certain to not respond to.
Size Counts. Food hurts, we don't want to see it.
Don't put a big bowl or plate of anything in front of me. It hurts to even look at it. Keep it small. Light and airy. I don't know why looking at a big plate of food bothers me but it does.
Notice taste changes. Cachexia can cause things to taste weird. Keep our new likes in mind.
If I can't stand garlic anymore, don't put it in anything we share, even if you like it and even if you know I used to love it. Now, it's different. I can no longer tolerate onions, garlic, or any kind of intense flavor but used to put them in everything. I still like salty food. I like popcorn with no butter. And sugar is something I never cared about but now like.
Taste changes can make things we enjoyed formerly undesirable. So pay attention and make sure those things we now like are on hand.
Choices: Provide tasty foods.
My husband is a truly terrible cook. (Sorry hon.) I finally tried a food subscription service, where meals are delivered with recipes. It's expensive and I hate that I have to pay for that with a kid in college - but that said, I eat a bit of it. There are several of these services. They give you choices of meals weekly and deliver them to your home. The right amounts are sent with recipes, and my husband just has to put the meals together. They are creative and flavorful, and I like them. That doesn't mean I can eat a full meal, but when I taste something that is good, I can usually eat a few bites. When it was him cooking on his own, I had no incentive at all to eat. Taste still counts, even if we like fewer and fewer things.
Diet: The time to worry about nutrition is over.
Nutrition is important when you are an early stage cancer patient regaining your health. Everyone should eat well. But when we are this sick, and hardly able to eat, getting calories in is more important than a balanced diet. My oncologist says any calorie is a good one. Your ideas about perfect nutrition have to go out the window at this late stage. That doesn't mean you shouldn't give a cancer patient nutritious foods, but only if they will eat it. Give little balanced nutritious meals through the day and see what the patient eats. If it's pretzels and grapes, that is better than nothing.
Nagging: Don't.
We know. We really do. If you get the urge to nag, do something instead. Put small amounts of food in front of a cancer patient without asking a couple times a day - and take it away whether it's eaten or not, and say nothing. Ignore your feelings of upset, time/money wasted or rejection if it isn't eaten. What's the ultimate goal? Your feelings, or helping a cancer patient with a symptom?
Know you tried. You showed your love. It's better than nagging. If you want to help, this is what help looks like. If you don't, that is fine, understandable really - nobody really wants to be responsible for another adult's food intake. Just don't put it back on us, which is what nagging does.
Remember, you can't force us to eat. You can't talk us into it. All you can do is tempt us and make it easier. If we can't do it, you did your best. Not only did you try to help us, you did it leaving our dignity intact. You can remember that with pride.
First, please read part one. You must understand that what you think is a loss of appetite is more than that - it's a true physical inability to eat. It's a symptom and a complication of disease and not something we control with willpower. No matter how much you beg and cajole, eating regular, normal meals is a medical impossibility and will only cause more stress. You might as well be begging somebody with a broken femur to get up and run a marathon.
I also want to make clear that I am not talking about the common loss of appetite that happens in an early stage cancer patient due to chemo, surgery, or as a medication side effect. Depression and some medications can also cause a lack of appetite in early stage cancer patients, and so appropriate diagnosis and medications may help. Any lack of appetite should be discussed with a doctor.
I am talking about something very different. I am talking about what happens to an end-stage, terminal cancer patient - anorexia-cachexia. This is a wasting condition where muscle is lost, metabolism is revved up yet food desire disappears, and it happens because of their disease, not because of treatment. Those who have cancer anorexia-cachexia experience it even when we are off treatment. Mine started before I started the new chemo, when the cancer (unbeknownst to me) began spreading again but when I was on the same therapy I'd been on for 2 years.
So what can you, as a caretaker, do to help? I will tell you what has worked for my home, and you can adapt this for yourself.
Communication: Don't ask the patient to make food decisions.
I do not want to be asked what I feel like eating, because the answer is nothing. My husband used to say "What do you want for breakfast?" or "Do you want eggs or pancakes?" "Do you want soup for dinner?" I truly cannot answer that question because I don't want anything. And not only do I not want it - it makes me angry to think about. Angry, frustrated, annoyed....You might as well ask me, "Do you want to be stabbed in the lung or the liver?" Neither!
I truly cannot make food decisions at this point. I told my husband that he is not allowed to talk to me about food. Bring me food or don't, cook or don't, but leave me out of it. I won't acknowledge that question and he has stopped. All decisions about food are his. I think I eat a tiny bit more since he stopped asking me and just started giving it to me.
Shop: Put yourself in the role of decision maker.
For husbands, or at least for mine, this may be something they aren't used to. I shopped and I cooked. Now I am beyond shopping for food. I used to go to Whole Foods and buy all the things I'd love in the hopes I could eat, yet it would rot in the fridge. Now, I don't even want to see it, my stomach roils just thinking about food. So, take it upon yourself to shop for your loved one. Try to keep the things you know she'll eat on hand, and keep the things you hope she'll eat around too. Don't worry so much about nutrition as much as intake. If all I can eat is cake or 3 musketeers mini-bars, well, make sure I have cake or candy in the house. Don't substitute what you believe is healthy - it's not going to be healthy if we can't tolerate eating it.
Take Control of Food for your Loved One: Bring foods every few hours.
While I won't make a food decision, I also don't want to be on my own with food intake because frankly, I wouldn't eat. At all. I know mentally I have to eat but cannot tolerate the thought or the pain that comes later, and most food sounds disgusting now - so I need help.
Despite the fact that everything but candy sounds awful, if something is put in front of me at dinner, I sometimes eat it.
I have no appetite and won't ask for it, but if a cup of hot soup, or a cup of tea and cookie is placed in front of me on a cold day, I might sip it. Maybe just a sip ... but it's something. If a tiny plate of fruit and cheese is placed in front of me at lunch, I might nibble at it. (Tiny being a few grapes and a tablespoon of cheese). I certainly won't get it myself and if you ask me if I want it, the answer is an unequivocal no. If it magically appears without questions or expectations, maybe I'd try. Maybe I wouldn't. But it is better than talking about it, which I am certain to not respond to.
Size Counts. Food hurts, we don't want to see it.
Don't put a big bowl or plate of anything in front of me. It hurts to even look at it. Keep it small. Light and airy. I don't know why looking at a big plate of food bothers me but it does.
Notice taste changes. Cachexia can cause things to taste weird. Keep our new likes in mind.
If I can't stand garlic anymore, don't put it in anything we share, even if you like it and even if you know I used to love it. Now, it's different. I can no longer tolerate onions, garlic, or any kind of intense flavor but used to put them in everything. I still like salty food. I like popcorn with no butter. And sugar is something I never cared about but now like.
Taste changes can make things we enjoyed formerly undesirable. So pay attention and make sure those things we now like are on hand.
Choices: Provide tasty foods.
My husband is a truly terrible cook. (Sorry hon.) I finally tried a food subscription service, where meals are delivered with recipes. It's expensive and I hate that I have to pay for that with a kid in college - but that said, I eat a bit of it. There are several of these services. They give you choices of meals weekly and deliver them to your home. The right amounts are sent with recipes, and my husband just has to put the meals together. They are creative and flavorful, and I like them. That doesn't mean I can eat a full meal, but when I taste something that is good, I can usually eat a few bites. When it was him cooking on his own, I had no incentive at all to eat. Taste still counts, even if we like fewer and fewer things.
Diet: The time to worry about nutrition is over.
Nutrition is important when you are an early stage cancer patient regaining your health. Everyone should eat well. But when we are this sick, and hardly able to eat, getting calories in is more important than a balanced diet. My oncologist says any calorie is a good one. Your ideas about perfect nutrition have to go out the window at this late stage. That doesn't mean you shouldn't give a cancer patient nutritious foods, but only if they will eat it. Give little balanced nutritious meals through the day and see what the patient eats. If it's pretzels and grapes, that is better than nothing.
Nagging: Don't.
We know. We really do. If you get the urge to nag, do something instead. Put small amounts of food in front of a cancer patient without asking a couple times a day - and take it away whether it's eaten or not, and say nothing. Ignore your feelings of upset, time/money wasted or rejection if it isn't eaten. What's the ultimate goal? Your feelings, or helping a cancer patient with a symptom?
Know you tried. You showed your love. It's better than nagging. If you want to help, this is what help looks like. If you don't, that is fine, understandable really - nobody really wants to be responsible for another adult's food intake. Just don't put it back on us, which is what nagging does.
Remember, you can't force us to eat. You can't talk us into it. All you can do is tempt us and make it easier. If we can't do it, you did your best. Not only did you try to help us, you did it leaving our dignity intact. You can remember that with pride.
Understanding. Truly learn this isn't within our control.
Imagine, if you were forced to eat something disgusting and got punched in the stomach with every bite which then caused hours of pain - eventually you wouldn't want to eat either, even if you had an appetite. When you have no desire for food and a food revulsion, when your body doesn't want food any more and with each bite there is real pain - it doesn't take long to learn to stop. Try to understand how hard it is for us. Try to understand that it is out of our control, and that it is our bodies doing this and not our minds.
Bottom line: If one of the symptoms of having a disease is a runny nose, hand us a tissue, don't try to convince us to make our nose stop running.
Do remember, it's nobody's fault. You can't talk us out of pain, you can only bring us a pill. You can't make us not tired, you can only let us rest. You also can't make us able to eat, you can only provide foods and leave the rest to us.
We want comfort, love and acceptance, especially at the end, not fights about food.
More resources:
Why do cancer patients lose weight rapidly
American Cancer Society (halfway down the page)
(By the way, while this says it happens in the last 3 months of life. Like everything with cancer, there is a continuum. I've already experienced it for longer than 3 months. Most people do stop eating as part of the dying process no matter what disease they have, and it is a sign that time is short. But others can go this way for a while, my mother did for about 2 years (she did, of course, get quite a lot of calories from alcohol). I don't think I'm within 3 months of death although my next scan will be telling. It is becoming clear that this disease is going to win for sure and I will not be one of those who gets ten years.
Impact on Relatives
Cachexia in the terminally-ill relative
This article is a great service to caregivers. I really like your suggestion not to talk about food but just to present tiny portions of appealing foods from time to time.
ReplyDeleteThank you! Somewhere, in one of the links, there is an article about how to add calories. I didn't want to post it because that's not the point, but if you want to try to add some calories and not talk about it, there are ways to do it.
DeleteBut food should not be a battle ground
Thank you again!
ReplyDeleteFabulous suggestions, Ann!
I especially appreciate the small plates and bowls, garnishes, attractive arrangements and no pressure to eat anything. My adage now that I’m not eating what I “should” for health and longevity isn’t “I eat everything I want”, but “I eat anything I can”. My body and belly lead, the rest of me follows.
The smell of cooking food can be troublesome, off putting, but may have to do with size & layout of home/kitchen.
Here’s a slideshow I especially appreciated that would be relative for caregivers in charge of feeding us:
http://www.slideshare.net/LifeAndDeathMatters/food-the-four-letter-word-in-end-of-life-care
Is she dying because she’s not eating? No, she’s not eating because she’s dying.
Sad, but true words and hard to take when food is love and prolonging the lives of loved ones has been a long held role. So much more to let go of!
In the tumult too,
Stephanie
Thank-you. I just wanted to let you know that these two posts have really touched me. They have helped me better understand a few things a little better ... I blogged about your posts here, as I wanted to share them with my blog readers too ... http://www.butdoctorihatepink.com/2015/11/loss-of-appetite-in-cancer-patients.html
ReplyDeleteAnn, you should put all your stuff in a book. It's so practical and readable.
ReplyDeleteI appreciate your sharing this. It's well-written, clear and informative. Not pulling any punches with reality. I just wish I would have had this to read when I was trying to help my sister at the end of her life. My BIL and I made a lot of mistakes in this area.
ReplyDeleteHelpful, but heartbreaking...
ReplyDeleteHi Ann, I have been following you since I was diagnosed in 2012. Just Stage 1 but from a family of many who die from this disease. The information you have provided is invaluable. I wish I had known some of this when I was taking care of my mother and trying to get her to eat. My sister in law is now stage 4 with this disease and I think I will be able to be more helpful at the end because of your very real information.
ReplyDeleteWonderful posts on the food issue and caregiving. I read, agreed and understood everything you wrote but my instinct was to write a comment "Have you tried xx?" UGH!
ReplyDeleteFood and caring for someone is so complicated. I think you have to dig deep to realize it's not about you but about the person you are caring for. It's tough for all involved.
My father died of liver failure after many years of substance abuse. Toward the end, the doctors told him he could have as much alcohol as he could drink - first reaction, WTF??? Then I really thought it through. He wasn't eating and he was terminal. If nothing else, he was getting calories from Budweiser (1440 calories a day in a 12-pack). It wasn't going to cure him, but nothing would, and he wasn't a candidate for a liver transplant. There were far too many younger folks trying to live to save one person hell-bent on suicide by alcohol.
ReplyDeleteI can relate although I'm sad for you. My mother wasn't diagnosed until a week before her death-it was criminal really. Don't expect decent health care in Carson City, NV! But aside from that, she would not have quit anyway and all that would have happened differently is she'd have known her time was short, which for her likely would have meant drinking even more, if that's possible. And who knows, maybe those drinks did keep her alive a bit longer. She also didn't need pain meds, although she had a backache. Just her morning routine was a painkiller. It is sad to see somebody so willingly destroy their body when you are trying so hard to save yours. But, that's the way it is...
Delete