Advice from cals please!

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ruthiep

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I'm not sure what the crud to do...Scott decided Sunday that he "really" didn't' need either of his AFOs! He's decided that he doesn't want me to stretch or massage his legs and refuses to wear his hand braces at night....what the crap? He absolutely needs his braces to walk and I'm petrified that he's gonna trip and "face plant" at some point. Advice please.....

Hugs and luv to all!

Ruth
 
I'm sorry, Ruth. Rarely could I make my husband stop doing things he shouldn't. Scott being mobile makes it hard to control, no matter how limited. He will face plant and say he won't do that again and then he will, if he is anything like my husband was.

I went through the exact same thing: no braces, even after all the brouhaha to get them. You just have to go with the flow or you will pull every last hair out of your head.

I wish I could tell you different and have no idea how you could persuade him. That will take somebody smarter than me.
 
It took my husband almost dieing from a fall for him to "Get it". He will not walk at all now as he was so frightened by the incident. My husband fell and punctured his neck on the rounded edge of a nightstand. One quarter inch from his jugular vein. Sorry
 
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Sorry to say, I think all you can do is try to make as much space as possible for him, and clear the room of sharp things to fall onto...
I know this isnt what you want or need to hear, but unfortunately, there isnt much we can do when our pals do this crap. Hopfully a not-so-serious fall will snap him out of this. I will be thinking of you guys.
 
Bran would do things that just scared the crap out of me. Untill they think its time to put the braces on or step up to the next device, they wont. You just have to go with they want, But you can choose not to help them. I refused to help him stand up if he wanst going to use the walker. Its was a battle with Bran. Until they make that choice, all you can do is refuse to be party to it (it will cause a fight, but hey so what?). I cant tell you how many times I had to call EMS to pick him up off the floor, or call my strongest buddies to do it, or kill myself to do cuz another EMS bill I just could not pay. When I hurt my back cuz Bran wanted to not use the walker and only the cane, he saw what I had to deal with and took my advice.
 
I agree with all the above comments - go with the flow and try to make areas safer are about it really. I used to strike deals with my husband about walking - I'll help you with this, if you go with my way for this. I never meant it to be patronising towards him but just some kind of middle ground deal and I would explain how frightening things were for me. If this didnt work - I would cry!
 
MEN ARE SOOOOOOOOOO HARD HEADED. We should start a thread on it. My dad would not wear his neck brace he would walk around holding his head up, he would fall backwards when he tried to get up instead of wearing his leg braces, He did not want me to put a bathroom on the first floor, so when he went on vacation I put one in his cost closet, when he got home I showed him his new tiolet, with a flower floating in the bowl, with his prize deer head hanging over it. LOL The look on his face was priceless. :) Hang in there,
 
Let me say something from the man's point of view. We have to be in control. We have to fight the disease. We have to go as long as possible without the AFOs. Otherwise, what's the use in being a man?

And you know that's why we need our women. 'Cause somebody's gotta have the brains and the heart in the family.

So my advice is to move the furniture as needed, and keep the EMT's in your pocket.
 
I'm going to pray that Scott's fall has no long term effects- because he is going to fall. It took one good fall on his face (so bad that the VA would not take his ID photo for over a month) for Terry to understand the need for a walker and braces. I would try to get Scott to compromise and at least let you do the leg exercises so they don't get stiff.
 
I think it's a common psychological phenomenon to always lag behind in accepting the current need for adapting to declining ability. I witnessed this with both my mother (multiple myeloma) and Annie (ALS). I think most of us would be the same. We hope that an "incident" was the result of factors not entirely related to the illness. So our physiological need to maintain as much normalcy as possible convinces us that we "won't let it happen again" - "we'll be more careful in the future".

In my experience it was better to let them come to accept the need for adaptation on their own - it actually didn't take too long. External pressure doesn't help them accept reality. Yes, they may get hurt, and an accident on their part can be very inconvenient for the CALS who have to deal with the consequences - to pick up the pieces. But, in my opinion, it is just part of what a CALS has to bear for the emotional and psychological well-being of our PALS. Offering them suggestions of what you think is needed is important, but letting them decide, knowing that they have your support, will also maintain the bond between CALS and PALS, which is especially important when they are spouses.

Just my own humbly offered thoughts from my own experiences.
 
I know my husband claims that every incident is unrelated to ALS--he is having an allergic reaction or I fed him too much or the wrong thing or the meds make him sicker what ever. My hospice nurse today told me it is common in people with terminal illness especially dieseases that paralyize and cause function loss. she had a name for it that I can not remember :) ==they(the pals) know but they can not accept completely what is happening. My husband has decided to stop taking his Neudexta Ruth, and I am beyond upset. I can not make him take it, and I am dreading the personality change that is going to happen again. I begged him to take it but I can not force it down his throat...(ok, I could since he doesnt have the strength to fight me off, but I would not do that).

I think the scaryest thing was when he would not stop driving, then followed by when he was walking and falling and would not use a walker or cane. We have hand braces that he will not wear, bipap he will not use, meds he won't take, but he will always take a massage. I am surprised scott doesnt at least want that from you! good luck!
 
My guy is afraid that if he stops doing what he CAN do, he won't be able to do it anymore, so he pushes himself.
 
Barbie - how did you get him to stop driving? We just went through an incident where Michael got lost and had no idea where he was or how he got there...Scary indeed.
Amy
 
The Answers from everyone is so spot on. I am in the same boat. Larry got his new AFO's wore them home 4 months ago and hasn't even tried them since. Says he doesn't like them. Didn't even give them a chance. Uses a walker, but the face plant is coming, I just know it. But as stated, we have to remember our man's point of view. Glad someone brought that up. Helps me feel better to know he is in control of his disease. So many similar circumstances. This forum helps us know we are not alone. My husband's courage keeps me going even if he is bull headed. Prayers to all. Chins up!
 
I have lost count of falls. Of course the last one was the bad one -- the totally busted shoulder that he can't have surgery for because his FVC has dropped too low. And, I thought, in error, that the falls were over since he hasn't been able to walk since January. I was so wrong! Yesterday as I was transferring him from bed to chair (he can stand utilizing the spasticity) his balance was suddenly off and no matter how hard I tried he fell...right onto his already bummed shoulder against the nightstand. What I am saying here is your PALS will fall at some point and likely there is not a thing you can do to stop it. It just may happen sooner rather than later. God Bless.
 
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