Social eating and feeding tubes

KarenNWendyn

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I’m getting a G-tube next week. Eating has become too problematic. My pulmonologist wants me to get most of my nutrition through the tube because she thinks I am starting to aspirate, or will certainly be more likely to do so over time.

Eating, as we know, is a social activity. When people get together, food is often involved. Then there are the holiday meals. Thanksgiving, in particular, is an important tradition in my family.

I’m envisioning getting a tube feeding before or after a social meal, and then I sit there amidst the company while they eat, hoping to participate in the social experience. Perhaps I sample or taste a bit of food if it’s safe, or perhaps not.

I’m curious how the experience has been for people here, both from the standpoint of the PALS as well as the CALS and others at the table. Is it uncomfortable for the PALS to sit there while others eat? Does it change the social dynamics for those eating if the PALS is sitting there not eating? How about for a simple meal with a friend or one’s partner? Do you think people try to get through their meal faster or enjoy it any less?
 

Nikki J

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My sister was completely unable to swallow for almost 2 years. We all sat at the table and ate and she sat there too participating in conversations via eye gaze. We did this for normal meals, celebrations and eating out. It wasn’t uncomfortable for us and I think not for her. We wanted her there and she wanted to be there.
 

notBrad

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I agree with Nikki, eating has never been a problem. I do find however the trache is a problem because I have trouble keeping up with the various conversations. I used to be fairly quick conversationaly, now I find that by the time I have typed something the conversation has shifted. It is akin to the person who thinks up a witty repartee about 5 minutes too late.

I do have a storage of dirty jokes and clean ones in addition to quite a few stories but they crop up in the prediction panels. Which really sucks when the room is filled with my friends wives and the tobii starts saying "there once was two women from Birmingham and this is the story concerning them". Etc etc

they need a check box to control the loading of libraries...

If anyone wants the limerick PM me and I will send you a copy, it's hands down the best one you will ever hear..
 

nona

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I find it harder for others than for me. Sure, I miss food, but not enough to avoid the social opportunity. And I enjoy the sights and smells of food without worrying about the calories. I think other people feel like they have to make or provide me with something I can enjoy, which is nice but then I feel bad if it doesn't work. Recently a friend made a pudding trifle and I couldn't manage the cookie crumbs. It's easier to just do your own thing.

p. S. It is easier to socialize when you're not worried about coughing or choking or drooling or having someone ask you a question when your mouth is full of soup.
 

KimT

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My local support group used to go out for early dinner after the meetings. It was, by far, the best experience I've had with a group of people. Much better than the actual meeting. Some could not eat, some took two hours to eat 1/4 of their meal, some put some booze down their tubes and others just pigged out, either by themselves or with the assistance of their CALS feeding them. Nobody cared about anything but being together and we started out as a bunch of strangers. Everyone helped everyone else.

Brad, PM me that limerick. I have some pretty good ones but they are quite nasty....very nasty.
 

KateEmerson

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I think the key is that everyone is relaxed about " it is what it is". Whether it was just Job and I, friends, or family we were there to " be" with each other.
 

azgirl

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I often play loud chewing sounds on computer sometimes. Other times I will throw out a question or topic. It's not uncomfortable at all. But like Brad said it's hard to keep up with conversation. It's unavoidable to not feel left out in big group!
 

Wilson2009

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First and foremost, I do not miss food because continuing to attempt to chew and swallow food was going to kill me well before I was going to succumb to ALS. Second, taking 90 minutes to eat a hamburger and fries was not enjoyable for me or people around me. Third, mealtime became enjoyable for my family and friends again as they were no longer tense with worry and concern as I choked my way through a meal.

With the feeding tube, I can enjoy sitting at the table and participating with the group, sipping on my cranberry juice and ginger ale mix or enjoying an adult beverage while not worrying about choking or coughing. I love my feeding tube.

While my adjustment to the feeding tube was pretty easy, my wife still struggles with the fact that I no longer eat by mouth. She worries that I am frustrated because she is eating foods we used to enjoy together or that people are judging her because she is eating while I drink a coke. It has gotten better over time, but it still bothers her. It probably would have been easier on her if our heads hadn't still been spinning from the diagnosis when the tube was placed. It was 20 days between the two events.
 

Kristina1

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We just moved our dining table into the living room so that I can hang out at meal times from my recliner! I'm about 50% by tube, 50% by mouth. My loss of eating by mouth has been gradual, not overnight or sudden, so the transition feels pretty natural to all of us.
 

ChristineRK

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I'm not sure if this would help or not, but since you have a g-tube (I believe that is in to your stomach) - maybe do a feeding while everyone else eats so that you are gradually able to feel full where it won't be as hard for you to not be able to eat.
I have a J-tube - so I don't get a 'full feeling' as my feeding goes directly into my intestines. Since I do tire easily and the holiday food is hard for me to watch/smell - I will sometimes catch my nap while everyone else is eating. That way I'm not around the food and I get the benefit of the 'recharge' for more socialization after dinner. Now, when I go out with friends, it doesn't bother me as much, so that I am able to sit at the table with everyone and be in the mix of things.

~Christine
 

ChristineRK

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I agree with Nikki, eating has never been a problem. I do find however the trache is a problem because I have trouble keeping up with the various conversations. I used to be fairly quick conversationaly, now I find that by the time I have typed something the conversation has shifted. It is akin to the person who thinks up a witty repartee about 5 minutes too late.

I do have a storage of dirty jokes and clean ones in addition to quite a few stories but they crop up in the prediction panels. Which really sucks when the room is filled with my friends wives and the tobii starts saying "there once was two women from Birmingham and this is the story concerning them". Etc etc

they need a check box to control the loading of libraries...

If anyone wants the limerick PM me and I will send you a copy, it's hands down the best one you will ever hear..
You're HILARIOUS, 'notBrad'! Thanks for the laugh!

~Christine
 
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