A Fall and a Question

[sadiemae]

Well, on the way back from San Fran doctor visit we stopped at a rest stop 60 miles from Reno, and Les took a nasty tumble. He is OK, but we are going to get his head Xrayed today, along with getting his teeth checked. He landed right on his face on the concrete. He is having headaches, and thinks he has a concussion. My question to you CALS and PALS, is how and when is it time to INSIST he(or she) do what you say. Such as not waiting to go to hospital, or the cane is not good enough anymore(use the walker or Powerchair all the time!) I think this fall has really scared him, and he may let me call the shots, but this could have been fatal. I want to let him have his independence, but I do not want him hurt. He is stubborn, and I felt it was OK to let him do as he wanted, considering all he has had to give up already, but enough is enough! Or is it? HUGS Lori:-D

 

[joelc]

I always get upset when PALS push the limits and risk really hurting themselves which will cause undue hardship on their CALS. I have always been an advocate of doing things before accidents happen. I think it is time for you to put your foot down and make him use a walker or wheelchair before he does serious damage to himself.

I know how hard it is to admit you can't safely do things anymore but out of love and respect for you he needs to quit being so stubborn.

My 2 cents.

 

[Miss]

Lori,

My husband took two nasty falls in one day 3 weeks ago. The second one put him on his face. It was so bad that the VA wouldn't take his ID photo for two weeks! He has since used the walker 24/7! It was a hard (literally) lesson. That being said - he no more lets me call the shots than the man in the moon! Our new problem is that he tries to put his feet too far apart when I'm getting him up (with the gait belt). This causes him to "list" left. Two days ago, he fell when my 15 year old was trying to help him up. Small slow fall, but . . .

 

[ZenArcher]

Lori, look at it this way. If someone told you that you needed to do something but it was difficult, inconvenient and you didn't feel it was necessary, would you do it? Don't get me wrong I'm not arguing that he should be up walking around. What I'm saying is "calling the shots" most likely won't work either. I like to think I'm rational but I know if I'm told I must do something even (or maybe especially) by my wife I bristle. A safer bet is to ask and explain why. Let him know it scares you and you'll probably hurt yourself trying to help him, etc. We're men ...

 

[sadiemae]

Thanks, I know what I need to do, How to do it is what I am after, and thats why this forum is so helpful. Keep the suggestions coming! HUGS, Lori

 

[melalthia]

Hi lori *waving*
I think this issue must be harder on the CALS who have partners with ALS, as opposed to those of us who have an extended family member who has ALS. If my husband was the one suffering instead of my mom, i think i'd be doubly frustrated when he didn't listen. When my mom doesn't listen (which is 90% of the time) i sort of chalk it up to her age/stubborness/ and the fact i really don't have the right to control her life. On the one hand, its frustrating to be somewhat voiceless, but on the other it allows me to be more detached? On the other hand, i guess what it sounds like i'm saying that those of you with wives or husbands with ALS have a right to control your partner because obviously a partner is an extension of yourself. hee hee. Of course, that ain't true either.

Still i think you have it a lot harder as a spectator for this horrible disease. I give you a big hug. Obviously i have no answers. But maybe if you quietly express how it makes you feel, eventually Les will take it to heart? There's not much you can do to make somebody use a walker or his chair if he doesn't want to.

OH! But i did have one thought. Where is his walker and/or powerchair? Is it out somewhere he constantly sees it? When my father had surgery on his ankle, he was really stubborn about using a walker and liked to pretend he didn't need it during recovery. But my step-mom wisely just made sure it was out and would quietly move it into the same room where he was at.. just in case he had a unbalanced moment and needed it. She would notice that it had been moved throughout the day, and he was using it when no one was watching him. Just an idea..

-m

 

[sadiemae]

Mel, Hi. We were on our way back from Forbes Norris ALS clinic, so wish you could talk your Mom into going. They are great! Anyway, his chair stays in the Van mostly, and he just doesnt like to use it for a quick errand. I will tell him it wont be so quick if he falls, so hop on the chair or stay in the Van. His walker is folded up by his bed by his cane. He fell because his knee gave out, and we have been waiting for the knee brace for 6 weeks now. HUGS Lori

 

[stephie]

Lori-
What I have found works best with my very stubborn husband is to insist that we get equipment ahead of time and promise that he doesn't have to use it until he decides to. Once we have the equipment at our house he ends up trying it out and realizes that it makes his life easier. In a small way, it makes him feel like he still has some control over his life. Good luck to you!

 

[sadiemae]

I so agree about getting stuff early. We have, and he does, for the most part. I just hate that it takes an accident to make him (and me) realize it. HUGS Lori

 

[abbas child]

Lori, I've been thinking...the issue of his safety and your need to feel some assurance that he will act responsibly. I wouldn't "tell" him that he has to do anything, but I'd ask him with the utmost gentle tone if he might be ready now, to use "whatever". If it seems to him that he is deciding for himself, you don't meet resentment or argument. That is what has helped me to transition. Falling down, of course, helped a whole lot, and being alone and unable to get off the floor is a powerful lesson. Probably the only thing I did without causing anyone any trouble was giving up driving. It's easy in looking back to see that I should have been faster in using the aides.

 

[joelc]

Since everyone disagrees with me and recommends you tip toe around the subject let me do it. I have no trouble talking some sense into anyone. LOL

I went out of my way trying to make life as easy as possible for my wife and relieve as much stess as possible.

 

[GlenBrittle]

HELL NO - don't tip toe.

His independence isn't worth a crap when he breaks some bones or worse , lying in the hospital.

I have a bad knee and a sore back from my "independence" . The pain is always there.

There is no shame in being safe.

 

[abbas child]

Ok... Joel as a pals, you did the safe thing (and yes, you were responsible and kind to your wife, relieving her of the headaches! Big smile here.)

I wish I literally could tip-toe. That would make my.... year. No, it would make my decade. But yes, tip-toeing has kept me out of trouble where going "toe to toe" wouldn't have done any good. Got to go for peaceful means whenever possible... when you can't duck, figuratively speaking only.

 

[sadiemae]

I agree with no tiptoeing anymore. We have decided that our living area needs to modified to allow for the walker to be used easier in the house. He does not want to fall outside, so its the chair from now on, or he stays home. His injuries are so similar to Linda's, except he didn't break a tooth, as he has an incisor that is like a fang, and this is what punctured his lip. Tiptoeing around and not standing my ground is the main reason he is hurt, and while I am not beating myself up over it, I will not allow this to happen again. I posted this in the CALS forum, hoping PALS would give me there insite, and you all did. I take all your responses to heart, but Joel, you posted first, and what you said is spot on, as usual. I recently pulled muscles in my side from walking Sadiemae, so we bought a harness which helps me have better control, but it is a pain to put it on her. He yells at me when I do not use the harness, as he doesn't want me to get hurt. HUGS Lori

 

[Miss]

Remember Lori, Joel is a border line saint. Most husbands do not necessarily think of what will make life easier for their wives. Stephie and Mel have a point (not to mention Jeff - my husband thinks along the exact same line as Jeff). Make the suggestions, let him know your concerns and fears, but ultimately, it is his choice. Remind him that if something really bad happens, he is going to end up at the VA hospital if it is too much for you to handle!