How do I help my mother's appetite loss due to untreated MAC?

Posted by patcare @patcare, Jul 7, 2023

Hello, I' m new to this group. My 92 year old Mom has MAC and bronchiectasis. She's not a candidate for the big 3 due to her fragile condition. We are managing lung health with periodic antibiotics and nebulizer treatments. The biggest issue is she's starving. She will not eat enough to enable her to feel well, especially in the morning. She's started back on Boost but only 2 a day of the 360 calorie type. She was drinking the high calorie Boost (>500 cal) 6 months ago but says it's too think and rich tasting. She doesn't even like foods that were her favorites. She's always been small and a picky eater but she's down to 98 lbs. now. She will take a bite of food and spit it out, unable to swallow for unknown reason. Can someone please help me understand this and provide recommendations on how to help her? I've cooked, purchased, and offered her so many different foods/shakes/soups/etc. but there's nothing that excites her. I've asked her to consider food as medicine because it can make a significant difference in how she feels but she says she can't do it. She's starving with a kitchen full of food and we can't do anything to stop it. She started Marinol 2 days ago but no significant improvement yet. I appreciate any suggestions this group can provide. I'm using Benecalorie in Jello salad, heavy whipping cream in soups and potatoes, any high calorie options I can find. How can I persuade her to eat? Thanks, Pat

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@patcare I am so sorry to hear you are dealing with this issue. Sad to say, it is not uncommon in our older relatives, with or without MAC. Taste buds change, appetite shrivels with less physical activity. Your Mom's situation is made worse by the fatigue the infection brings, and the need for more calories to fight it.

Before I was diagnosed with MAC, and over the 18 months of treatment, I lost about 25% of my body weight for the same reasons your Mom gives. If anyone put a cup of liquid, a bowl of soup, or a snack-sized plate of food in front of me, it was overwhelming and I didn't touch it.

What finally made it work for me was, literally, one ounce of food or 3 ounces of liquid at a time. Every hour, I would force myself to eat - one small piece of cheese, 1/2 a hard boiled egg, 3 ounces of a fruit & vegetable smoothie enriched with protein powder, 4-5 cashews, one square of graham cracker with a dab of peanut butter, a few teaspoons of ice cream... To this day, over 3 years later, I still eat small portions of food most of the time.

With my grands, we call these little bites "nibbles" - have you offered your Mom tiny portions?
Sue

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Yes, I had to start eating the same as Sue, tiny amounts and I found, still find, that if I'm doing something while I'm eating, I'm not thinking about having to eat it. I drink Ensure milkshakes and I'm now back to a reasonable weight, although I am also on medication.
A bit like lying in bed thinking I really must go to sleep, and your mind is focused on that, you will not fall asleep. The minute your mind wanders off, off you drop!

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Some times a little lemon sorbet or sherbet will help stimulate the taste buds, something I learned while working in a nursing home. Although, my Mom is 93 and says she has no appetite and claims she can't think of one thing she would want to eat.

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@sueinmn

@patcare I am so sorry to hear you are dealing with this issue. Sad to say, it is not uncommon in our older relatives, with or without MAC. Taste buds change, appetite shrivels with less physical activity. Your Mom's situation is made worse by the fatigue the infection brings, and the need for more calories to fight it.

Before I was diagnosed with MAC, and over the 18 months of treatment, I lost about 25% of my body weight for the same reasons your Mom gives. If anyone put a cup of liquid, a bowl of soup, or a snack-sized plate of food in front of me, it was overwhelming and I didn't touch it.

What finally made it work for me was, literally, one ounce of food or 3 ounces of liquid at a time. Every hour, I would force myself to eat - one small piece of cheese, 1/2 a hard boiled egg, 3 ounces of a fruit & vegetable smoothie enriched with protein powder, 4-5 cashews, one square of graham cracker with a dab of peanut butter, a few teaspoons of ice cream... To this day, over 3 years later, I still eat small portions of food most of the time.

With my grands, we call these little bites "nibbles" - have you offered your Mom tiny portions?
Sue

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Yes! Nibbles and sips 🙂 Sue, thank you so much for your comments. You've given me a better understanding of how she feels. I realized a few months back that large servings were overwhelming to her. I purchased small, pretty bowls and ramekins specifically for her food. She never stated that she felt overwhelmed, but I could tell from her reaction when she looked at a plate full of food. It's helpful to know that this is a common side effect of the disease, and it will be encouraging to her, too.
I sincerely appreciate your guidance.
Pat

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@suethenanny

Yes, I had to start eating the same as Sue, tiny amounts and I found, still find, that if I'm doing something while I'm eating, I'm not thinking about having to eat it. I drink Ensure milkshakes and I'm now back to a reasonable weight, although I am also on medication.
A bit like lying in bed thinking I really must go to sleep, and your mind is focused on that, you will not fall asleep. The minute your mind wanders off, off you drop!

Jump to this post

Thanks so much! Good idea to provide a distraction while eating.

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@rbl

Some times a little lemon sorbet or sherbet will help stimulate the taste buds, something I learned while working in a nursing home. Although, my Mom is 93 and says she has no appetite and claims she can't think of one thing she would want to eat.

Jump to this post

I've heard that about the lemon flavor stimulating appetite. We will try the sorbet. Thank you!

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I've had a lot of problems with weight also. When you cough day and night, it is hard not to lose. On the antibiotics (big 3)--my doc was not knowledgeable about MAC--I lost from 129 to 115 in a month. It's been over 4 years and have only gained four pounds. I've tried different Ensure products but just not able to tolerate them. I now use nutrition shakes by Kate Farms. They taste better and don't bother my gut. Sometimes I'll mix it with lactaid milk, vanilla yogurt and even Instant Breakfast. I'm having problems with dental surgery so this is helpful during the time of healing. Best of luck.

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