Liguid Asperation

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whimsy_1971

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David had a swallowing test done a couple of days ago. It showed he was asperating on his liquids and they suggested he use a thickening agent. They told him that he could get phenmonia from the asperation if he didnt use the thickening agent.

I got him home and he will not drink anything with it, he says basicaly that he doesnt care if he get phenmonia, he said" what it's going to do kill me".

Im so upset. I dont know what to do. :cry:
 

swi71

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Swallowing

Hey--
I feel for you--my husband has been on pureed foods and thickened liquids for several years now, but he can't speak, so he doesn't fight it. Could you encourage David to drink thick milkshakes and smoothies? Then he won't feel cheated. He's probably scared and angry right now. When ALS starts taking things away, the natural response is to get angry, sarcastic and/or defensive. Remind him (gently) that you love him and only want him around as long as possible. Fighting ALS will take both of you working together--I wish I'd realized this sooner than I did. Good luck.
swi71
 

crystalkk

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Chirsty,

Hopefully he will come around and try it. Don't take it personnally, it is a normal reaction.
 

Al

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Hi Christy. It's just one more thing in the list we'll lose. It makes us mad and snarly sometimes. Don't take it to heart. I think he still has his sense of humor if he can still crack off about it killing him. I do that all the time. He'll probably come around in a few days.
AL.
 

andyvaughn

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Christy,
I think it is pretty common to find resistance to every new change. My husband has been the same way. He was diagnosed in February, he promptly went shopping for a sail boat - then a ocean going power boat - amongst other big ticket items he wanted. I was in a panic, thinking how will I sell whatever it is he buys once he can't use it - as well as the financial panic from losing his income, etc. A friend with ALS that I made on one of the forums emailed me and said basically let it go, he will come around...it was very hard, but I did just that. And did that with everything. At first my husband would NOT discuss a wheelchair, an advance directive, NONE of it. But, ALS has marched on, and he slowly has come to accept what is. My husband told me at first he would "check out" before he would get in a wheelchair, well, our first loaner manual wheelchair is coming Monday, and he is happy that it is coming, since walking is becoming hard. He let a group of friends do a fund raiser this weekend, we raised enough money to put a stair lift in our house, which he is thrilled about, since the stairs are a pretty tedious and dangerous event these days. What I guess I am saying, is that every new thing, whether it be thick it or a wheelchair, is another step down, my husband sees it as losing something he will never get back. I know my husband gives in ONLY when no other options are on the table....But, as the disease goes, he is also finding taking the help makes his life easier. He even got a handicapped placard, and used it yesterday. I know it was hard on his pride, but it was that or walk several hundred feet to the front door, thankfully he chose the handicapped space.
So, he hopefully will realize that thick it simply makes his life easier. If he isn't already doing this, also have him tuck his chin to his chest when swallowing, it helps. I know how hard this is, it is heartbreaking and terrifying to watch our spouses sink into the mire of ALS. Try to take care of yourself too....and I like what someone else said, remind him that you love him, and just want him around for a long time, a bout of pnuemonia is no thrill ride, but if you are patient he will probably come around soon.
Andrea - wife of Pals Jim.
 

whimsy_1971

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thank u all again

Thanks you all. If it werent for u guys and gals I dont know where I would be. This has sure been a large sruggle on us and you all as well. He still hasnt given in yet, but Im trying to be patient. It's so scary though.

Watching him and it seems weekly something new is taken away. Our next appt with the Als Clinic is July 11th, and Im not sure how much longer we can go with me transferring him the way we are. He is getting to were he cant suffle his feet or help w/ his legs for me to pull him up any longer. Im getting ready to go into the panic mode again, not knowing what to do or were to go next. I hate this disease. I hate all of it. I hate watching this and seeing how painful it has become for David.
 
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