Eating Out

[DeansWife]

I've mentioned before that my PALS chokes when he eats and is still refusing the tube. My question is this. How do others here handle going out to lunch, dinner etc. with family, friends when your PALS cannot eat? Do you get them a tea, coffee or order a meal that will be un-eaten? When we visit my kids, we like to all go out for dinner and now I'm just not sure how to handle it. I know my PALS doesn't like eating in public because of the choking but he wants to go with us which I totally agree with. I've ordered childs portions in the past but he still don't eat much when were are out. How do you handle this? Thanks in advance. Great forum.

 

[lovedbygoldens]

My mom has very similar experiences with eating by mouth. She is on a tube however most of our family functions and visits have in the past centered around food. We are now making the effort to adopt new traditions. This past weekend we spent Saturday outside in the backyard with our bevarages and visited while the kids played in the sandbox, on the slide and even had a pretty exciting t-ball game. I think the thing she appreciates the most is to be included. Maybe there are some other ways in which you could all get together and visit with food not being the center. Maybe a game night or an afternoon at the park.

ALS has been the driver for alot of change in our family. Hang in there!

 

[ltbeauti]

I agree that making other traditions is a good idea. I have been making smoothies, shakes, gelatins, coffee drinks etc at family get togethers. people love them. And they can be made so easy in a magic bullet, vita max, blender, whatever.

I am still eating by mouth and have not gotten a feeding tube. I used to get choked a lot, but that has not been the case since I have learned to be careful of my posture when eating (sitting up straight, but slightly leaning forward). I also tuck my chin when I swallow; this helps to position food and drink so it is less likey that I will get choked. I also used to get choked because when I ate it made me get thick mucus which would make me choke. I now drink Papya juice and take Papaya enzyme to help with thick secretions.

I only tell you this b/c you said that he is refusing a feeding tube. There is a great risk of aspiration when eating by mouth which could lead to many serious problems.

This said, I do still go out to eat with others, but it takes me so long to eat that I usually only split something with someone and eat later at home. My problem is my tongue cannot move the food in my mouth around very well and I have to use a fork or utensil to move the food to back teeth to chew it.
Good luck to you in figuring out what works best with your PALS. This crazy disease is so varied that what works for some.. will not work for others. I for one am glad that we have this forum so we can see how others are coping with daily life in the SLOW lane.

 

[10steps]

Beer works.

 

[Ladyinn]

I don't have the feeding tube and I occasionally am choking on food. We have found that if my caregiver orders a meal I eat off of his plate since I can no longer feed myself. He takes a bite and I take a bite he gives me. My bites are smaller than his. At first I didn't want to go out to eat, then one day we were in the restaurant and I was about to have one of my melt downs when a man in a powered cheer drove up and sat with his family at the table next to ours. They seem to be having a lot of fun and I decided I could to. Good luck, change is hard, but not as hard as we think it might be if we are willing to give it a try. Blessings to both of you.

 

[sadiemae]

My husband has difficulty holding a fork or spoon, so he orders finger food such as Pizza when we go out.

 

[Katie C]

I would break Glen's food up into tiny pieces before I started eating. Then he was able to eat them himself. I also kept single serving packets of Thickit in my purse .. then we could thicken anything he wanted to drink.. yup it even works with beer. Or so he told me, I never did try that! He had a couple of choking episodes in restaurants. We'd get it cleared then go back to eating. He still deserved to go out and enjoy!

 

[rose]

Looking at it as a social occasion rather than a "food as fuel" event helps.

Think about how you really don't notice how much others eat (for example) while at a casual cookout or cocktail party. Its about the company of others. No one really pays attention to how much is consumed by others.

If the restaurant is more focused on the cuisine rather than friends and family just getting together to have a good time, then maybe its better to choose somewhere else to go. You don't want to find yourself in a situation with a waiter hovering wanting to know if the food is okay.

Don and I usually shared the main entree even before I had trouble eating, so that really hasn't changed, He says upfront to the server that we're going to share, and asks for an extra plate. We've never even once had this treated as an unusual request.

Some forum members have used the magic bullet to blend with when eating out, (I haven't tried, but then I have the tube and can round out a meal with formula if I need to)

If your husband is resistant to the tube, getting a bottle of ensure into him before you go to the restaurant, and then more of something he can eat afterwards, will give him the best of both worlds within the parameters he's comfortable with.

 

[Barbie]

my husband doesn't like to go to restaurants for that very reason. for the longest time he would not go out at all. now he will only for speical occasions, but he does not eat, just drinks. I usually feed him before we go out or get take out at the end of the meal and blend it up at home. no big deal.
The only exception is that we took our daughter to sushi for her graduation, and the chef chopped the food super fine for him and added lovely sauces. I could feed him with a spoon and he loved it since the restaurant was not busy. Oh, and the miso soup throu a straw!

 

[DeansWife]

Thanks for the many suggestions. We do eat meals at my son's or daughter's house and those times are more social get togethers to be with family, not centered around the eating. That said, there are favorite restaurants we enjoy going to when we are in Montgomery. I was just trying to figure out how to include my PALS without making him feel excluded. Getting him to drink a boost before, or even eat before we go will be what I try. He can then just order his favorite ice tea and sip it. He also does well with creamed soups if they are available. It's hard enough on him to not be able to really get involved in conversation though he does use his dry erase board - just isn't the same thing and we all try to realize that. Again, thanks. I keep praying that he will change his mind on the tube but knowing him as well as I do (married 40 years) he's not likely to.

 

[cubcake]

We still go to restaurants. We worked together at a company where my DH worked for 32 years, and he was, and is, very loved. My supervisor has organized a lunch every Tuesday since November for him. Sometimes, they go off without a hitch, and other times it is one long choking episode. My husband is never embarrassed (maybe frustrated) because beforehand, I send out a message (email, phone call, whatever) to the attendees letting them know exactly what to expect. If he chokes, everyone carries on as if everything is perfectly fine until I raise my hands over my head (as if I'm on a rollercoaster). At that point, EVERYONE at the table raises their arms, and then he will too, and it goes far with helping him clear whatever is causing the problem. We've had to leave the table on occassion, but we just come back when things are fine and carry on.

Try to make everything as normal as possible. Choking is his new normal, but it's all in the attitude, isn't it?

I'm praying that he will change his mind, and praying that you find peace in whatever he decides. <Hug>

 

[Toto's Dorothy]

I hkave done the restaurant 1 time since losikg the last limb. My daughter took me toka popular restaurant and it was about 4:30. We ordered and then the crowd came in. Well, we had kids watching as my daughter fekd me and like was mentioned before the waiter camke a hallf dozen times. Then when we got ready to leave we had to move our tabje and chairs for me to get out ( they khad put people all around us ). Suffice it say,k that was my only timke out. I havk a peg, but I am starting back on foods. I can't handle the no food diet and I do know the consequences.

Cubcake I like your idea and making the time when there isn't a crowd around.

Please let us know how it went.

 

[Jason's Dream]

Try to focus on the time you are spending together rather then focusing on what other's around you think or see. When Jason was first diagnosed, we both decided to live life to the fullest and do whatever we wanted, and often.

Jason and I were still going on dates 2 weeks before he died.

One of our favorite restaraunts was Red Lobster.

At first he would order the fried platters because they were easy for him to grasp with his hand then try fight with holding and manuvering a fork.

Then when it got to where he couldn't feed himself, I carried a bag for him (kind of like a diaper bag for my kids). In it, I had the "mechanics" to put something in his PEG tube, a boost, bendy straws (smaller and easier for him to control the liquid, less choking that way), wash cloths, a big towel to drape over him (he hated to get his clothes dirty - at first he hated the idea of this, but as we used it, it allowed him to relax and enjoy his food and not worry soo much about it landing on his shirt), his roxanol (liquid morphene), etc.

I would drive his chair to the table, park it side ways, recline it back, so it would be less pressure on his tailbone, then pull out the towel and drape over him.

Then I would get the menu, and we would look at it, I would watch where his eyes traveled on the menu and then, based upon what I knew he liked, would ask him, you want this? Then ask him what he wanted to drink (he hated Thick-It and would rather choke then use that stuff).

When it got to where Salads were hard to eat, he would get the soup, lobster bisque. For sides, he would get baked potato, and I would ask for extra butter and sour cream to make it moist and easier for him to manuver in his mouth and swallow and get down.

I would use bendy straws I brought, over the straws in the restaraunt, because they were smaller, and the bend I could slip on the side of the opening of his mouth, as his mouth muscles were going. When those muscles were almost gone, I use to stick the straw in the drink, cover the one opening with my finger, then release the liquid (slowly) into his mouth.

I am sure, and know many stared at us, but our Red Lobster here was great with us. All the servers treated us soo kindly.

On our last Valentines Day together, we went to Red Lobster, it was quite busy, but we didn't mind, we were with each other. We finally were seated. Yes, we were dressed in summer clothing (Jason in a t-shirt and shorts - his choice and comfort) and not dressed up like everyone else. Yes, many looked at us, but after the initial stares, they soon smiled at us. We were enjoying our time together, and it didn't matter what other people thought. We got an appetizer, two alcaholic drinks, two big meals, and even desserts. When I went to pay our check and we were given our bill, our server told us that someone in the restaraunt had saw us and had wanted to pay our bill (over $75) for us. Still to this day I have no clue who it was, but what a blessing.

I think because we focused on our time together and enjoying our time together, that we made others feel at ease and comfortable around us. In the end, it really doesn't matter what others think. It matters that you and your sweetheart are making the most of your time together and enjoying your time together.

When its all said and done, you will be soo glad that you focused on what really mattered and had those dates out, or time with family. Time is soo precious. Don't waste it thinking about the stuff that, in the end, will not matter.