This is simply exhausting.....

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Thank you to all who shared their stories...I've been lucky I guess, my husband is still able to cook dinner for me and do limited things around the house. He was officially diagnosed 2 months ago although he has been having problems all of 2012. He stopped working 7 months ago because his job was very physical and he was no longer able to work. The doctors say his progression is slow, but it is still so distressing to see him struggle to do things that he used to do without thought-fasten a seatbelt, pull up his trousers, zip his jacket, etc. I've started doing the things that I always considered "man's work", such as grass cutting, weed wacking, check the oil in the car and the like. His dexterity is bad and his arms are really weak. I expect when he can no longer move them I will leave my job to take care of him...the big problem with that is what do I do about our healthcare? I keep telling myself that I don't have all the answers yet, but in time I will find them.
 
My heart goes out to all here! My husband and I actually had a fight tonight. It is burn out I know, but it is so very painful to fight knowing we have limited time together. But, this disease takes over so much that I expressed to him that we just don't feel like a couple sometimes because it is all do this do that...tube feeds, transfers, etc... He was frustrated tonight and said to me he just asked one thing of me... (I wasn't paying attention)... but I was trying to finish something I started online. That made me feel so bad because I am always doing something for him. Then comes the guilt for snapping.
I dearly love my husband and I hate this disease!
This is by far the most difficult thing I have ever faced and in my life I have had to deal with a great deal. Nothing compares!
 
KissJ,

Welcome to the human race! Geez Louise, you are a super CALS - not super natural. How can our relationship with our spouse not change in these circumstances? Roles change, finances change, responsibilities change, meals change... gosh many times our homes change.

I'm quite certain your hubby adores you. No matter what.

You're right. ALS is the crapiest of the crappy. Fighting is crappy too, but it's a passing moment. It clears the air.

Don't be harder on yourself than ALS is. :grin:
 
It is amazing to read these posts, we caregivers are all alone yet out here there are many of us in this dreadful situation. When I read some posts they make me feel guilty - I am not sure I can go on being the care - giver. If we don't argue, we cry, when I read about people who don't seem to have a hard time caring for their loved on it makes me feel rotten about my own feelings.

Milanupa -In some ways your post could be mine

The funny thing about those condoms is that it is not easy to get a condom on a soft penis, we are now in the process of ordering a larger size:).
 
Patgayle, don't feel bad==everyone had bad times and don't be fooled that some people have no problems. This is the hardest job in the world. Don't give up, because it is also the most important. I find that this forum and the people I talk to here help me so much--it is comforting to know that other people understand and face the same fears as me

We are here for you--vent all you like!
 
Robinal decreases secretions.. Ask your md. Good luck. Mila
 
There is also OTC med to moisten his mouth. Luv mila
 
My husband was vented in 2008, and the thing I miss the most is hearing his voice. It has been so long, I almost forgot what it sounded like. Luckily I got our wedding on DVD and can watch it and hear his voice. Sure I miss the hugs and cuddling, but the soothing sound of his voice is a little, but big thing.
 
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