How Long Without the Peg?

[DeansWife]

I'm back again with the same issue between my dh and me. He's choking on everything, thick, thin, smooth, grainy it doesn't matter. He is having a lot of difficulty getting his meds down. During dinner tonight I asked him if he wasn't getting tired of all the choking when eating. He signaled me with a thumb's up. I said, you know you have a option. He asked what and I said the Peg tube. His response was blaah! :sad:

I know it's his decision but it's really rough on him and me (stressful for me), all the constant choking, him not eating as much as he should and losing weight. I'm really frustrated by it all! Would love to just slap him silly sometimes!

That said, I wonder how much of his expected time left will be lost because he refuses the Peg tube? He certainly can't continue not eating, lose more weight and survive. The bad thing is that his arms and legs are not that bad yet. He walkes with a walker (sometimes he just takes off without it) and can use his arm/hands for most everything except lifting and unscrewing tight lids. I can't even say why he won't consider it because he won't talk about it. How can you make a decision if you won't even talk about it?

Thanks for listening - I needed to blow off some steam. :x

 

[Georgia Peach]

Do you know what his FVC level happens to be? If it is lower than 50% the decision has already been made. My husband is at 37% and it makes me sad but again that was his decision when he was first diagnosed and he hasn't changed his mind. When you say he chokes, does he cough after eating or is he aspirating when it goes down. My husband coughs a lot and we got the cough assist yesterday but it doesn't seem to help bring up a productive cough yet.

Sorry for your frustration. We got in a verbal altercation last night because I wasn't scratching the right spot on his back and he couldn't tell me where to scratch in order to fix his itch!

 

[DeansWife]

Georgia Peach, Not sure what FVC is but assume it has to do with his breathing/oxygen levels? We saw the pulmanologist this week and he said he was doing good (?) and recommended he use a nebulizer once a day or more if needed to help break up the mucus build up. He had a slight wheezing sound in the lungs. When my dh chokes, that is exactly what he does so he does not aspirate. He will keep at it until he actually spits out food particles. I would not call it a cough. What is the cough assist?

I just wish I could get him to realize that the PEG is not life support in the sense that he's thinking, at least not at this point! I'm going to keep trying to get him to at least read about it.

We've had a few verbal altercations. The last one was this week when I would not go to the lumber yard and purchase lumber for him to build a work table. We have no room in the garage for one and he would not use it even if we did! He said I got everything I want but when he wants something it's a no. I realize that he's just not thinking in terms of what he can do but in terms of what he used to be able to do. I changed the subject and he got over it.

Maybe his itch was what I call the roaming itch! Sometimes my dh will scratch my back and can never find the itch but it's there! It moves - LOL!

 

[Katie C]

I'm not sure if we've discussed this before but has he had a cognitive evaluation? Here's why I ask... if he does have some level of FTD, then getting the PEG really isn't going to help you all that much because as long as he's mobile he can and will seek out things to eat anyway. If that's the case at least you can save yourself the stress of the arguments. It's very much like the work table... it is possible he truly doesn't understand that he no longer has the capability of building something, much like he doesn't understand that eating causes choking. (Does he continue to attempt to eat during a choking episode? That would be another sign.) You might check out the FTD forum on here and see if it strikes that chord of familiarity.

 

[DeansWife]

Katie, I believe our neurologist and the specialist have done a cognitive evaluation in the past. He was showing signs of short term memory loss years before he was diagnosed with ALS. His mother had dememtia. He does know that when he eats, he will most likely choke. He gets aggitated at himself when it happens. He does not continue to eat when he chokes but lets himself settle down before resuming.

I went and read a several of the posts on the FTD forum, including some articles that were posted there. I don't think he fits the profile but I'll certainly inquire at the next doctor appointment.

I read on here about so many that are going to ALS Clinics - how lucky they are that they have them near. We have none. The nearest one is 3 hours away one way. We are dealing with our local neurologist who has sent us to a specialist in Birmingham, I think more to ease his own mind that he has diagnosed correctly! We have a ALS Support Group coming up in a couple of weeks and I'm going to see if they can recommend a "specialist in ALS" in our local area.

Thanks for the reply though. The FTD forum certainly was worth looking at in case I see signs in the future!

 

[rcharlton]

Do you know what his FVC level happens to be? If it is lower than 50% the decision has already been made.

If you are referring to the dangers of general anaesthetic when lung function is greatly impaired, there are ways to place a feeding tube without general anaesthetic - so theoretically it can be done at any time regardless of FVC. Obviously there are more considerations but it is still possible.

 

[KKay]

There are a few considerations... first, you can still eat food when you have a peg tube, therefore he can take the calories and nutrition he needs thru the tube (even if only when he is running low) and still eat the food he can tolerate. See ing as how he is still mobile he wont be for long if he has no energy, that may be convincing enough for him to consider the tube. Also, choking is dangerous, very dangerous. And aspirations will probably lead to eventual infection, pnemonia etc. My husband opted out of the feeding tube and we are dealing with the same thing, however he really has no arm or leg strength and therefore doesn't expend as much energy or is as hungry as he used to be.

 

[caldona]

My fvc is 27 my doctor said if I wanted a peg this would not be a problem and I ask him a couple of times. I don't think I believe this.

 

[happygardener]

I am in a similar situation.My husband will not discuss itat all.he is fighting this depute several diagnosis and 3rd ,4 th opinions.he keeps pushing himself to more,thinking this will help.I have modified his diet to Truro cut back on the aspiration and chocking but he tries to go ahead with the forbidden foods,just to prove he is doing well.I just go along and support him,when he is ready he will know.I hope it will not be too late.

 

[SueG]

DeansWife, we drive 3+ hrs @ way to ALS clinic and worth every minute of the long drive . They know all the latest and help us know what to expect,
Good luck
Sue

 

[DeansWife]

I have talked to my dh's neurologist office staff and feel confident in him. If/when we move to Montgomery we will have access to a clinic and will take advantage of it. Meanwhile every day he chokes, some days worse than others. I have figured he's only getting around 1000 calories a day. I think I'll up the Boost to 2 a day, can't hurt except he'll fuss. Our local ALS Support Group is going to talk about the benefits of a Peg tube at the March meeting. I'm hoping that he will listen and understand the benefits of getting one. Until then, it's one day at a time or I probably should say, one meal at a time.

I appreciate the response from everyone and please keep any suggestions coming.

He basically is living on soups thickened with crackers, pasta, and Boost! I guess if he's happy, so am I?

 

[kiwisally]

Deanswife, hi, I'm bulbar, I understand a wee bit about food issues, I'm also one hell of a cook (if I do say so myself). Biggest problem I have with foods is with wet and mixed consistency. Ex: Broth based soup with bits of soft veg and pasta are a flipping NIGHTMARE, can't move the bits round without the broth dripping out sides of mouth, broth goes down and I choke while tying to manipulate the soft bits enough to swallow. I haven't eaten this sort of thing in six months or more. I am PEG free, Boost free and could put on weight if I chose to. For me, it's not so much actually swallowing the food (yet) as it is getting it to the back, in position and condition that it will go down without stress. This is much and easily improved however, take that same soup, any soup or food for that matter, and run it though a food processor or blender until its an even thick but not stuck to a spoon when turned over consistency, add water, milk, broth whatever is appropriate as needed, then re-warm it and serve it with a very shallow bowed spoon. My lips don't work well enough to get the food out of the bowl of a deep spoon. I too have some days better than others but find if I can start the morning out with fairly normal items, soft scrambled egg, grits, even toast with the crust cut off under a poached egg IF I put enough Hollandaise sauce on it, lunch is usually said soup, snacks of fruit smothies. By dinner I can usually manage another bit of chewing and am still eating "family meals" but with a bit of food processor action on anything that isn't easily manipulated. I have also found that staying calm goes a long way. Who knew you don't actually have to swallow everything that is in the very back of your mouth and half way down each and ever time. If you can stay calm and just keep eating it goes down the next time. Its an odd feeling, takes some getting used to but it can be done, the absolute key it to make sure everything is of a potentially swallowable size before it goes into your mouth. All the best with your very real difficulties and I hope you can find some help in the sort term and more in the long term.

 

[DeansWife]

kiwisally,

I admire your drive to eat as much normal as you can. Unfortunately my dh does not seem to realize that he needs to take small bites, eat slowly and not put anything else in his mouth when he chokes! I have told him this over and over but he still just does what he wants. We have used the blender for some things but all he wants to eat is pasta. He will do eggs, oatmeal, grits for breakfast.

Please understand that I don't mean to sound insensative. I absolutely HATE when he chokes because it has to bother/hurt him which inturn bothers me but it also grates on my nerves! Some times more than others. I would leave the room but I'm afraid that would be the time he would need the heimlich done.

Unfortunately for him and me, he will not listen to reason ie: slow eating, small bites. I know there is no "right" answer. I ask him if he isn't tired choking and he says yes. I say well there is the tube and he says NO! If he only knew how much easier it would be for both of us! We are scheduled for another round of e-stem therapy and I'm praying it helps with the swallowing but each time it does not last as long as before.

He's eating right now or I should say choking it down and I'm sitting across the room just shaking from my nerves being on edge. I don't want to feel this way but I'm human and can't help it. I only want what is best for him and what would make him more comfortable. I thank God every day that he can still use his arms and legs.

I'm rambling so will end this now. It just worries me so that I'm going to become physically ill due to the stress and then what!

 

[kiwisally]

Deanswife, I can sympathise, I have a husband who "does what he wants" as well. It doesn't make life easy but I can honestly say that I wouldn't change him if I could I don't think you are insensitive, far from it, as you said you are a wreck yourself because you care so much. Again I can understand about this getting on your nerves. My husband has sinus issues, lots of blowing, treatments, noise, (details not important) the point is, I love him dearly, I know this is not his fault but sometime...as you say...it gets on my nerves. I am sorry you feel so trapped and helpless in this situation. It's so easy for me, I know my problems and can often find a solution or way round. It must be so very hard when you don't know exactly what the food issues are, can't feel them yourself, try so hard and your efforts to help go unheeded. Please tell me, are you the main cook or is he? I hope you are, if so maybe I could help you in some way with ideas about foods that I know through my own experiences are less chocking and easy and you could work them into his diet without him realising. I would be happy to help in any way I can.

 

[DeansWife]

kiwisally,

I read how compassionate, caring etc all the caregivers are and it makes me feel like sh**! I do care, I think I'm compassionate and I love my hubby but the times are many when I just want to scream and scream and scream!

In answer to your question, I do what cooking gets done. He's become so picky about what he eats that he is mostely eating frozen pasta dinners, prefers the alfredo. Doesn't really like the tomato sauce based. I realize it has to be boring for him. When I suggest something he says "whatever you want, I'll have a pasta". I'm diabetic and can't have pasta for every meal (even though I do love my pasta). I've made meat, potato's and veggies and he mostly picks, then makes him a pasta. He has blended some things but isn't happy with the look of it I guess cause he says he don't want to do that. Grrrrrrr. I'm trying so hard to find something, anything other than pasta that he will/can eat. I'm open to all suggestions and will see what his response is. I've thought about not buying the frozen pasta but I'm afraid he will lose more weight and I don't want that to happen.

We have a ALS Support Group meeting next Thursday - I can't wait! Wish the Peg was the topic at this meeting but it will be in March. I'm hoping that will help him change his mind!

Will be waiting your ideas....