17 replies to this topic

[rmm]

Hi there folks,

Ok, so my mum (whom I posted about in another thread) is still in the hospital, but is slowly getting better from the problem that sent her there (i.e. inflamed liver and hepatitis probably due to too much of her pain medication). She'll need rehab to get her strength back and hopefully to get her exercising. She has a slew of medical issues (the usual lovely suite of scleroderma and CREST symptoms - renal failure, skin issues, pulmonary hypertension, GI issues, etc.).

I wanted to get some advice on trying to encourage someone to eat even when they don't feel like it - any tips or tricks? I'm especially looking for people who have scleroderma so I can try and help understand without being a Food Nag.

Right now the big issue is that she's lost weight being in the hospital (since last week of February) because she felt awful and didn't feel up to eating - and while everyone complains about the quality of the food, it didn't look too bad to me. She's also been depressed (understandably) and they had to stop the antidepressant she's on when she had issues with her liver. They've started it back up, and it should take another week before it's kicked in, which might help her appetite. I know there are issues with her dry mouth (possibly swallowing as well), stomach pains, heartburn, as well as that feeling of satiation (i.e. she doesn't want or 'need' to eat much, and isn't hungry much) and that the satiation is a combo of the scleroderma as well as kidney disease. But we're really worried, and doctors have said that she might need a feeding tube if we can't seem to get her to eat. She's incredibly tired on top of everything too - so eating dinner 'feels' like an effort

It's not that she's on a hunger strike per se - she just doesn't seem hungry, and we've tried everything to encourage her but have had no such luck. She's on a low salt, low potassium diet; while there's some stuff she has to avoid (like bananas, sadly) there's still piles of stuff she's able to eat. All she's really been craving is milkshakes - those Vanilla Bean Lattes with Whipped Cream from her favorite coffee shop, which is all she wants to eat. I know she doesn't want to go on a liquid diet, and a feeding tube is distressing for everyone involved, but I don't know what to do. We've talked to the doctors and they're aware of our concerns, and when she gets discharged to rehab we'll have a nutritionist too.

I was reading about how when people are told by loved ones to quit smoking (or quit any bad habit), that people tend to block out the judgmental/harsh talk after a while; I don't know if that's what's happening when we're all begging her to eat something. It's like she's not being rational about this; I don't expect her to eat lots of her hospital food (i.e. if she eats the mashed potatoes and skips the meat, I'd understand) but she's just lost interest, and won't even have the Boost Nutritional Supplements they provide for every meal.

Does anyone have any ideas? Sorry for the length.

Regards,

Rachel

[Shelley Ensz]

Dear Rachel,

I'm sorry you mum is still in the hospital and that she is having so many medical issues. Please give her an extra hug, just from me, will you?

I'm not a doctor, I have no medical training at all, and in fact I couldn't even pass the bar exam for a latte shop. Purely as a patient myself, and one who has suffered a bout of antipathy for food (which you will see by the looks of my waistline, lamentably it did not last long enough) -- I'd be inclined to say, let her eat whatever she wants. If she wants chocolate and ice cream, or to guzzle lattes day and night, bring it on! Don't ask her what she wants to eat, ask her what sounds FUN to eat. Maybe she wants her Boost mixed with vanilla ice cream and topped with whipped cream, and perhaps to nibble on some good-tasting chewable vitamins.

Plus, what is so terrible about a liquid diet? Many of us are on at least partial liquid diets, like when we have smoothies for breakfast. I can also see how she could get riled and want to hold her ground against everyone urging her to eat. Let her not eat if she wants; let her go on liquid meals or even a feeding tube if she wants! Her body is going to tell her best what to do and even if it makes little sense to anyone else, what is important is that she is allowed to follow her own path.

A feeding tube isn't the end of the world, and many people with scleroderma actually improve on a feeding tube. It bypasses most of the difficult things, like swallowing and digesting.

She's depressed. She probably needs comfort food until she pulls out of it. So, comfort her, and look for any way to make it fun and cheerful, even candy sprinkles on top, or a portable refrigerator by her bed so she could help herself to treats day or nite.

Try to think of her as being pregnant right now. When I was pregnant, in the early stages, I couldn't eat anything for hours on end. I was so nauseated in the mornings, I couldn't even stand the smell of eggs cooking. Lunchtime, I would bolt for the doors when I saw my co-workers getting gravy put over their pork sandwiches. Then, at 2am, I would awaken with horrible overwhelming urges for a strawberry shake! It had to be a strawberry shake, no other flavor, and I had to have it that minute. So I wasn't without an appetite and I may not have been eating a perfectly nutritious meal, but my baby lived through it and so did I, and nature eventually restored a normal appetite to me.

She's going through a very rough time. Her stomach is probably not up to processing very much right now and she may not want to be awake all day and night with heartburn, too. So, unless her doctors advise otherwise, just go with the flow -- give her what she really wants, even if you think of it as "junk food", this is only temporary and as long as it has calories, why not??

[Penny]

Rachel,

I am so sorry that your mother is going through all of this and you as well, it must be very frightening and frustrating to watch your mother go through this and feel like you are helpless.

From her perspective, eating is just not fun. Her mouth is dry all the time so she wants to drink more than eat so she fills up on liquid and when she does eat her belly is uncomfortable thanks to the gastrointestinal (GI) issues, and with all she has been through recently she just wants to feel better. Ensure is pretty good, but only having chocolate, vanilla or strawberry to choose from can be very bland after a while. Maybe you can bring in some from the stores in different flavors. They have mocha, butter pecan, all kinds of flavors in the stores and she might be willing to try them out so she can have more choices.

You said that she likes the vanilla bean latte milkshakes. Maybe you can try smoothies with carbs added or even making ensure shakes for her, anything to show her all the different ways that she can get what she needs and not feel like she is being so restricted. Ask the doctors if you can bring her home cooked meals, following her dietary restrictions of course, and make one of her favorite meals for her. Just eating familiar foods prepared the way she is used to having them at home will cheer her up and might stimulate her appetite.

Warm hugs and I hope that she is home soon and gets past this hurdle.

Penny

[Jeannie McClelland]

Hi Rachel,

What a great family your mum has! Excuse me while I give you a quick hug. You deserve it. And good on you for being pro-active.

I can add a couple of tips to what Shelley and Penny have already said.

For one, having to wait while food cools down enough to eat can blast what little energy and appetite you have right out the window. Foods that may not seem too hot for one person can actually be painful for the person with a tender mouth due to dryness or mouth ulcers to eat. On the other hand, really cold things can be difficult to deal with if you have Raynaud's. (I pour my vanilla double whipped cream honey double shot latté into a lightweight insulated mug.) I also find if I try to eat or drink too much of anything really cold, I get esophageal spasm. And, if I'm supping that through a straw, I make sure I have one that's big enough to deliver the goodies without too much sucking power being applied.

A second thing, for me at least, is position. Sitting up in bed just doesn't do it. I'm not upright enough to get food down the esophagus in a 'timely' manner and I feel full almost instantly. Besides, if you are stuck in bed, the mind seems to tell you it isn't the place to be eating. Even sitting in a chair beside the bed, with a table at the right height and distance from you makes a lot of difference. It's a psychological trick, but it's also less tiring because of the better ergonomics.

Conservation of energy - small meals that are easy to eat, served more frequently. Food that comes in small pieces that can be picked up easily with the fingers or a fork is more tempting than that gorgeous steak you just can't tackle no matter how sharp the knife. For soups and other liquids, a spoon with a deep, rounded bowl is a lot easier to handle. You might research the range of eating implements available for those with motor disabilities. It's all about having the staying power to complete a meal.

The other thing that comes to mind is smells. The combination of a lovely get-well bouquet of flowers and broccoli, um, well, not appetizing. Some people get turned off by visitors' perfumes, etc. When I have a bad patch, the mere smell of any meat cooking means I won't be eating it~

Lastly, has anyone thought about giving your mum antacids shortly before a meal? The sounds and smells of an imminent meal can trigger an acid rush before the actual arrival of food into the GI system. Maybe getting a jump on the heartburn, etc. will revive her interest in eating.

Is there anyone your mom could talk to about the eating issues? I had a dear friend with MS who wouldn't/couldn't talk to her family and friends about why she was refusing treatment. It took a sympathetic counselor to get to the bottom of that. The why she was refusing treatment is irrelevant here, but her unwillingness to talk to us stemmed from a fear of upsetting us with her reasons.

I hope your mum is feeling better soon. Please give her warm hugs and all our best wishes,

[Kathy D]

Rachel,

I am so sorry for you and your mom.

My father had a hard time eating after a colostomy and with the doctors blessing, I made him his favorite brownies in a "mini muffin cake pan" and added chocolate instant breakfast mixes in the brownies. He actually would eat those and they had some extra vitamins minerals and protein that normal brownies would not, and the mini muffin pan I think helped him not each too much of sugar only.

You and mum are in my thoughts,

KD

[bookworm]

Hi Rachel,

I have been going through a rough patch throughout this past fall and winter and have lost weight and don’t seem to have much appetite. Naturally, my family are worried and trying to get me to eat more. I am doing the best I can, but I suppose a little “nagging” is okay! They do keep me reminded that it really is important and that I simply must make it a priority in my life right now. However, enough is enough.

Everyone here had good ideas. I agree with Shelley about letting her eat whatever she wants. If she wants to live on milkshakes with whipped cream, well okay! I often think the only thing that sounds good is a malt or a bowl of ice cream. It seems cold and light and easy to swallow. Of course I have to be careful of cold, but I can take it slow.

Could you put Ensure or Boost into her favorite shake? Someone else mentioned Smoothies and that might work. I drink a lot of Ensure because it's a small amount, packed with nutrition and it's pretty easy and fast to get down! I get Ensure Plus -- the one with 350 calories!

I had a fantastic piece of homemade lemon chiffon cake for breakfast this morning with coffee. I can always drink coffee! I recently read that coffee has in it more antioxidants per cup than any other single serving of food. I don’t know whether that’s true or not, but it was on a medical website. They are saying, these days, that coffee actually is very good for you.

If she’s developed liver problems from taking pain medications, then she must have a lot of pain. Perhaps you could request a pain management specialist to come up with a new pain management plan. Thinking has changed in recent years regarding pain management. Unless your pain is controlled you have no quality of life.

You mentioned that after your mom gets out of the hospital, then out of rehab, she will start seeing a nutritionist. Why wait? Doesn’t the hospital have a nutritionist on staff? Most of them do, I think. If not, couldn’t a private one come in?

Someone already mentioned small portions and I surely agree with that. Especially at restaurants, I sometimes take one look at a plate just piled with food, and I want to just get up and walk out. It’s just overwhelming!

A bowl of jello with pineapple or some cottage cheese and fruit or some applesauce or pudding don’t sound too bad right now.
Anyway, good luck to you and your mom. Tell her she’s not alone.

Mary in Texas

[CFMBabs]

I was reading you post almost relating your situation to the anguish my family have experienced with my problems, so I thought you would like to hear something from the patient's side of the fence!

I have esophageal problems and unfortunately I had to have a feeding tube. All of this happened almost five years ago now. I developed esophageal dysfunction meaning I couldn't swallow anything. I lost so much weight and was so poorly that a feeding tube was the only way out for me. Fortunately I can now tolerate liquids.

Your mum's loss of appetite may only be short term. I know of many people who have simply lost their appetite due to illness and they have a feeding tube in situ for just a short while. They wouldn't place it into her stomach via her abdomen unless it was going to be a longer term measure, instead they would place it through her nose.

As for foods which bring back appetites? Well having scleroderma is difficult enough but when you have esophageal problems, the last thing you want is heartburn on top of everything you are dealing with. I find milkshakes the ideal way to get nutrition into you and there is an additive from the dietitian that you can add to make it more nutritious, in fact the dietician will probably have some special milk shakes up her sleeve but personally they are a bit yuck!

Having a feeding tube is better than wasting away. I've been there and it's the most awful feeling in the world -- edge of starvation! I'm pretty sure your mum will begin eating again when she feels ready and able to tolerate food. In the meantime, let her drink milkshakes, but ask about the additive!

By the way I'm still on my feeding tube and although a nuisance sometimes, on the whole it isn't too bad! I wouldn't be here without it!

Best wishes
Barbara xxx

[Judy Devlin]

Hi Rachel,

I understand your frustration. I KNOW the caregivers' role is tougher than the patient's.

Having scleroderma myself, I know how much trouble I have eating. I have major GI issues, and between feeling so yucky most of the time, I seldom even have an appetite, but know I have to put something in the belly. What works for me when I don't want to eat (which is most of the time cause I know if I eat then I have to go through the elimination agony); its a double-edge sword. But I'll put myself on an nutrition drink diet. Since we're not allowed to post brand names you can email me if you don't know what drinks I'm referring to. There are now also fruit/vegetable combo drinks. And I can then add toast, crackers, mashed potatoes, oatmeal, instant breakfast drinks and cereals, etc.

The only solid food that I can always eat though, is a sugared crueller or pancakes. :-) I don't have any weight issues so indulging in my donut vice is okay for me, plus it makes my stomach feel full. I also take a multiple vitamin daily so I feel I at least get the nutrients I need.

But forcing someone to eat when they don't want to or can't always ruins my appetite even more. I would concentrate on what your mom does like to eat whether you agree or not. The appetite comes and goes and a caregiver has little control or say on that. Not much different than trying to get a toddler to eat.

Take care,

Judy

[miocean]

Rachel,

You mentioned that your mother has renal failure. I have kidney failure also and am on the renal diet. I have to limit my fluid intake to 32 oz. per day, I am usually over, that is so hard to do. I can't have things high in potassium which are bananas, oranges, tomatoes, chocolate and broccoli. I however, have had them in small amounts infrequently. I have to watch phosphorus. That means I have to limit dairy products like yogurt, milk, and ice cream and fruit. (I don't use milk, I use a non-dairy creamer instead). That makes it very hard to make a smoothie.

Of course, if your mother isn't eating anything, that would make a difference. Anything she could get down would be better than nothing and she would probably eat so little of it it wouldn't affect her diet.

If anybody has suggestions as to make a smoothie following my diet restrictions I'd appreciate it.

Good luck with your mom!

miocean

[jefa]

There are lots of recipes on the internet for non-dairy smoothies made from everything from almond milk to green tea, of all things.

Search for "non-dairy smoothies".

[bookworm]

Hi All,

I think both rice milk and soy milk are good milk substitutes. They have very little taste, really, and work great on cereal and in smoothies.

Mary in Texas

[Shelley Ensz]

I can't have any sort of dairy (or milk by-product) or soy or gluten (which is everywhere, even in some nondairy milks). I like original-flavor almond milk (not the vanilla flavor, yuk) but I am absolutely wild about potato milk! The potato milk is doubly nice because it is powdered, so it always keeps, and it is absolutely terrific to use as a nondairy creamer, and it is great (nice and creamy) for making smoothies, too.

Potato milk has an especially good nutritional profile (no fat, no cholesterol, no protein, only 70 calories a cup and with lots of calcium) so it is something to try for those who need to avoid milk for any reason. Plus it is yummy!

[debonair susie]

Hi Rachael,

You have been offered many wonderful ways to help your mum by way of encouragement/desiring to eat/drink.

Those with personal experience have posted. I'm just sure that you will find a way that works for your mum.

You, your mum and family will be close in thought. Please, please -- keep us posted as to how your mum is doing.

[razz]

Hi Rachel,

I wanted to write earlier but got caught up in a baking fiasco (my daughter is expecting and wanted banana bread). I finally sat down and am so impressed by all the responses. I feel like having a smoothie, right now!

I can relate to this topic because I have a hard time gaining weight. It's no picnic being barely 90, okay it's really 89.4 pounds. And, I don't like it. I try really hard to gain weight but I think several things are going on with your mom. Being in the hospital is hard (especially long-term). Not being able to get up and walk around when you want, feeling ill, medical personnel poking and prodding and well meaning people insisting you eat, well I feel for your mom. She's been in control of herself all her life and now things are dramatically different. I say if she wants to drink fancy coffee drinks from morning till night time then at least she's getting something in her tummy for now. I agree it is hard to eat or drink in a bedridden position. Find out what other foods she enjoys and is easy to swallow. All of the baby jar foods are great and some combinations blended together would make great smoothies. Like apples and bananas, or carrots and apples, pears and peaches, etc. Try experimenting.

Also, maybe your mom needs to talk to someone, like a therapist who could help her sort through her feelings. In the past when I've felt down in the dumps or lonely, etc. I lose the motivation to eat. Then if I miss a meal, I feel even more fatigued because I didn't eat. It can be a vicious cycle. I remind myself of all my blessings and then make the effort to try and gain weight. I do want to be around for as long as I can.

I think as long as your mom has an appetite that's great!! Give your mom a hug for me!

Hugs,
Razz

[debonair susie]

Hi again, Rachael,

I forgot to do something when I posted on your thread yesterday...

...I forgot to give YOU a {{{{{Great Big Soft Hug}}}}} and please remember that there are plenty more where those came from!

This has got to be so difficult for you. If we were able, I'm just sure that there would be a boatload of us on our way to give our full support to you and your mum.

Razz,
I really like what you posted to Rachael...especially because you DO know...firsthand, what it's like.
Continue taking good care of yourself, Razz.

...and congratulations on the grandbaby you are "expecting"! My best to your daughter also.

[razz]

Thanks Susie!

Who could imagine equating eating food with being a chore? I stock up on my favorite foods. Those highest in calories, no substitute ingredients, only 100% ingredients as much as possible.

I'm looking forward to sporting my new title, Granny!


Hugs,
Razz

[rmm]

Wow, thank you sooo much guys for the input. I really feel so much better hearing other patients and family's perspectives. I might email the thread to my sister so she can print it out and show it to my mum - who is still a bit afraid of the Internets, sadly. Maybe one day I'll coax her in here. This illness, more than any other one I've read, is truly a day by day thing - one day you have a setback, next day you're full steam ahead. Bizarre, eh?

My mum is slowly but surely getting her appetite back - I think once she's in rehab she'll feel far more motivated, since she'll be doing more exercise so that even *she* will feel like eating - that's what happened last year. Also the food at the rehab hospital was quite nice, and they had a cafeteria where you could go and get snacks too, which was handy - we'd just take her down there and offer her something as an option. Like I don't need to tell anyone here, it's so hard to eat healthy and eat a low-salt diet - all the stuff that will get us fat is not the stuff she likes to eat much anyway. Also her anti-depressant is FINALLY kicking in - it's really random when it starts to work, especially if you don't weigh much and your metabolism is out, etc. We've also told them to keep her on it no matter what - that it's just as important as any other medication to make sure she eats. The doctors are doing a calorie count (?) to make sure she's getting what she can, and I think the threat of the Nose Feeding Tube worked.. hehe. My mum was a nurse, and apparently there's also some White Coat Syndrome going on as well - I.e. if family ask her to do something, she might not - but if a doctor tells her, she'll do it ASAP.

Razz, thank you for the baking fiasco line - that was definitely my morning smile Good luck with the baking - I like it myself but always know it means a big risk of Flour on the Floor, even if there's not flour in the recipe And Judy, my mum LOVES the honey cruellers. Not exactly nutrition central, but tasty and good in moderation

Thanks so much everyone... appreciate the support. Hugs to all.

[bookworm]

Hi Rachel,

I was thinking about your mother and wondering if she got out of the hospital and into rehab and if she is improving and developing an appetite. Let us hear from you if you can.

Mary in Texas