Hi from a newb

[scubachick]

I found this forum a couple of days ago and thought I would say hello. I've been reading the posts and find them very helpful. You all seem very supportive of one another!

My husband was diagnosed 4/2009. He is 47 and I am 39. My step son is away at college and will graduate this spring. The ALS is only affecting his legs right now and he can still walk, although with much more difficulty than back in April. He has not been back to work or driven a car since the day he was diagnosed. He used to be a workaholic who was not at home very much, so that change in him has been pretty profound in addition to everything else that's happening.

I'm working on getting things modified in the house and gathering the various equipment he will need. All the folks at our local MDA chapter and ALS clinic have been absolutely fantastic in helping me with this, thank god!

Some days are ok, others are pretty dark. Seems like this is going to be quite an emotional roller coaster for both of us. He is very depressed, understandibly so (and yes he is on an antidepressant and anxiolytic). Right now he is angry with me because I want to hire someone to come in and help during the day when the time comes that he needs a higher level care. He's not wanting any part of that and wants his sister or me with him all the time (she lives in CO, we are in TX). He asked me to quit my job, and I don't want to, so of course I feel like I'm a horrible person. I remind myself every morning to find something positive during this day to focus on, but sometimes it's just very difficult.

Anyway, thanks for listening. It's comforting to know that we are not alone in this experience, although I do hate this disease and wish no one had to face it.

Heidi

 

[Zaphoon]

Heidi,

Welcome to the forum! I'm sorry your husband has ALS and I really hope that you are able to get the help you need down the road.

We're here for you!

Zaphoon

 

[brooksea]

Welcome Heidi ! Sorry you have to be here. My husband was 48 when he was diagnosed. He can still walk, but has serious balance issues. He can't communicate effectively, which is sad, because that is what he did best and made a living at. But we are dealing. His arms and hands are just about useless and he now has a feeding tube. My husband has stated the same as yours, that he will not let anyone else care for him.

But maybe you are rushing it just a bit?... He hasn't had time to adjust to his diagnosed really. You've got your career...what has he got? I don't mean to be harsh, but think of his ego and all he has lost and will lose. It's not easy for him. And I know it won't be easy for you.

If you want to continue your career, I don't blame you. But, maybe back off a little on the urgency of your planning (or leave him out of it for now). Perhaps you could interview agencies on your own and have one in your back pocket when the time comes.

It seems to be too overwhelming for him to lose his job, lose driving and think about the future. You sound like a very practical person that likes to plan like me! LOL Just be prepared that all the planning in the world will not always work out. Why did all these losses happen the day he was diagnosed? Was he already that far into the disease?

 

[cris]

Heidi, first I would like to welcome you here! We will all help support and give advise whenever possible! I'm sorry you had to find this sight, but glad you did.

I agree w/ CJ, try to do the planning quietly. They, and you need time to adjust to the idea. They lose so much in this disease. It's frustrating for all involved. I try to do most of the planning w/out ny hubby's knowledge. I ask his opinion whenever I must. The rest of the time I just do it alone.

Will keep you both in my prayers!

 

[jennbenn]

welcome you will find so much advice and support here. we all understand. my situation like everyone here mirrors yours in may ways and all i can say is this is sooo hard to adjust to, give him time and he will gain some peace about the changes that have occured and the ones ahead.

 

[Blubear]

Welcome to our forum! So sorry about your circumstances. I agree with CJ (Brooksea), do things on your own and have things prepared in advance as far as a future caregiver. You WILL need to have breaks. I am also 47, and even though I am a woman, I have always had a career and became disabled (not from ALS and now back to work part time after 6 years of hell) back in 2003. Mind you I have worked since I was 13 and loved it. When I couldn't work it was a horrible shock for me. I felt worthless. Useless to society. It put me in a huge depression and anti-depressants at the time didnt help much. So, I can relate to your husband. To top it off he is a man, and that has to be big on his ego since they always feel that they have to be the provider even if you are working. At this point, I suspect he is also bored out of his mind. He needs to get out as much as possible to keep his spirits up. Can you find a local support group? The local ALSA has a list of them. It would be good for both of you. I agree that you should not have to give up your job, but is it possible to just cut back your hours a bit and to meet him half way? Just a suggestion hun. Hang in there!
Hugs,
kari

 

[handinhand]

Heidi, i can tell that you want to get everything in order...right now, For me i think is was a way of dealing with what was going on and wondering if i would be gone tomorrow? After the first few month of that i finally settled down. I have written notes in a notebook.. Things to do now and later. I am sorry for what you and your hubby are going through. This just isn't easy...Come here often? Hugs, linda

 

[scubachick]

Thanks to all for the good advice. I have done a lot of the planning on my own, but he expressed an interest in being more involved lately, which is good. I'm going to pursue the home care issue on my own for now. I won't need the help for a while so there is time for adjustment.

To answer the questions posed, he chose not to go back to work or drive. He can still walk as long as he can use his arms or his cane to help with balance. He doesn't have any weakness in his arms yet, no bulbar symptoms and pulmonary function is normal. He and I are both physicians, but the kind of work we do is a lot of sitting and reading cases on a microscope, so he could still be working if he wanted to (even could do it from home; my job structure is different and I could not work from home). He does not want to leave the house or see anyone except close family. He spends most of the day sleeping and reads metaphysical/spiritual books or writes poetry when he is awake. I know this was such a big shock for him and me, and he was so devastated initially that he just couldn't face anybody or anything. I'm trying to be patient and let him deal with this in his own way as best I can. Some days are just very frustrating as you all well know. I will give it time...

Thanks again for the input, mainly I just wanted to vent and say hello.

H

 

[JeffP]

hello out therre im sorry to here of your husbands diagnosed ialso was diagnosed aug09 ican still walk upperbody works but it affecterd my speech where most of the time i sound drunk lol.this a awlful disease but i also think give your husband some more time to deal with this .hes still blessed being able to walk even with a cane .and as a man sometimes are egos get in the way. you found the right site and there are so many out here that truly care im the same age as your husband if he ever chooses to want to talk im here for both of you jeffp