What do you do to encourage your spouse?

[BrianD]

Okay, so what do you do for your spouse to still maintain some amount of marriage relationship? It seems we have gotten into a rut where I am just seen as a man with ALS where the only interaction is for something to take care of me. And most of the time it is done with an irritated aura to it. No sense of teamwork to it at all.

I feel pretty lame for asking, but could use some ideas on how to encourage my wife instead of just trying to stay out of her way.

Thanks!

 

[Ms. Pie]

Loving, understanding non-confrontational conversation without anger about what each other is thinking, feeling, and experiencing about every every thing. Especially about changed life plans, how you feel about the new situation of ALS, love, heartache, expectations from each other, joys, every every thing. My husband and I have these honest conversations from time to time when things get a little uncomfortable. Have you looked in to attending any ALS Support Group meetings in your area? We attend once a month and our group leader is just a phone call or e-mail away. We've found the group of other PALS & CALS to be a wealth of helpful information, support, friendship, and emotional support.

 

[jb63]

I try not to take my frustrations out on my husband. He is my CALS. Since the shock of the diagnosis, we joke about things others may not find funny, but we do. He lowers the hoyer doen over me and calls it the mouse trap or when he stretches me he plays the frisky PT. I also do not critize anything he does, even if it is wrong, as he is learning and trying his best.

 

[Miss]

Honestly, as the relatively young (50) wife of someone with ALS, the only answer to that is outside help. For the year that I was the 24/7 caregiver, it just wasn't possible. Getting someone in the house to help made all of the difference in the world in terms of our relationship. For some reason, the male CALS don't seem to have as much trouble with this as the female CALS. Out of the 20 some odd families (3/4 male PALS, 1/4 female PALS) that I have been associated with here, that seems to be to case anyway.

 

[BrianD]

Have been getting outside help for a bit now since August. Three nights a week to do all the showering, grooming, etc. Now couple mornings a week too. I don't need alot of care during the day. She's often able to leave me for hours.

But I know I'm not the most encouragement, and having a hard time being able to do that. Looking for ideas on things I can do to help in that area.

 

[Miss]

Thank you and please go a very long way. Telling her what a good job she is doing (at something that she never studied to do!) will help to. I know it worked for me! Remember the things that used to work. Maybe she likes to be told she looks good, the meal was good, etc. Start by trying to do two of those things a day. If you don't get results, try three! If you still don't get results, try sitting down and talking to her about it - calmly. Be sure not to use an a voice that is harsh. I guess I'm assuming that you still have a voice! If not, use the nice guy (on our Dynavox, it was Mike) on your machine! Good luck. I know it isn't easy. Having help in the house is a great start!

 

[Susan10]

I try to compliment my CALS on things he does. I know he gets frustrated cooking, so when he makes something I particularly like, I'm sure to say something about how good it is, several times. That was his family's way. The please and thank you help more than i would ever have imagined. if she just knows you're trying, i think that may soften her heart.

 

[caldona]

I do say think you a lot and he says you know you don't have to thank me all of the time. I also apologize to my husband because he has to take care of me. I told him he could put me in the Nursing Home when he gets tired of taking care of me he informed me they couldn't take care of me like he does. He will soon be 77 years old. We do hire a young lady three hours a day which is a big help.

 

[momap53]

I try to say please and thank you all the time. Apologizing for needing help with something is not appreciated by my CALS. The biggest boon is getting help in to do some of the routine housework and gardening. I'm sure the outside help with some of your ADLS is much appreciated and will leave her more free to be a wife instead of just a caregiver. Brian, I wish you the best of luck with this.

 

[caldona]

My husband doesn't appreciate me apologizing but it makes him think when he starts to getting cranky with me it kind of changes the atmosphere for awhile.This is not easy on any of us.

 

[Ms. Pie]

You're right, it isn't easy for any of us. But we do the best we can to stay positive. My sibs and Mom and my husband and friends all look to me to see how they're supposed to act. So I'm strong for them and try to stay positive. I hope I can keep this up as things progress. We stay strong for each other. It helps!

 

[tmasters]

Sometimes I ask her if I can just "hold her" and we snuggle in bed with our arms around each other for an hour. Usually conversation comes but it's nice just to lay together without any outside interference or anything that has to get done.

Unfortunately, the farther this disease progresses the less she becomes my wife and lover and the more she becomes my caregiver and "Mom". It sucks.

I try to be the best husband I can. I'm getting better at it...

-Tom

 

[sadiemae]

I agree with the please and thank-you and I am sorry go a long ways. Unfortunatly I am the one saying this all the time. My PALS has always talked in a harsh tone, and those words are hard to say when you are angry all the time

 

[Poet Chistopher Robin]

Hello,

Not that bad here yet, but my other half at times gets angry with me, I know and understand why, it’s because she effectively sees me as pathetic for leaving her. I know as well as you that it is not my fault that I am dying, but I also understand her anger at me eventually leaving her on her own.

I am ready and prepared to go into care at the drop of a pin if it ever gets to the need, but she is a care assistant as her job, I guess its the one thing no one can prepare you for when its your own.

No idea if this helps you both, but you will both get there in the end, and thank you for opening our eyes here

 

[SMP51]

Brian you just broke my heart.
I know I sound irritated with my husbands requests sometimes and I dont mean to.The world seems to be on us care givers' shoulders while we are in tandum busy doing this huge juggling act, trying to tend to everything...and then there is the guilt when we cant, or when we take some time "off" while knowing you never get time off from this monster of a disease.
The list is long the many reasons we are angry at this disease.
So when my husband asks me to tend to a handful of requests as soon as I walk in the door from work, after also running what ever errends need dealing with and feeling like life is like running around as chicken with its head cut off, I can easily forget he has been patiently waiting for me to get home to hand him something.
I dont mean to be frustrated, I just am. And I am sure he does not mean to sound like he wants me to drop whatever is in my hand at the moment to tend to something but he is frustated too. (and why is it I am slap in the middle of something when I hear my named called? lol!)
And the dusty window sill that has nagged at him all day to be wiped clean is totally the last thing on my list, I have hundreds of things I have got to get done!...but that view is important so its what is top of his list... and perhaps more important if I slow down and I think about it.

Brian, thank you for reminding me to be patient and kind.
Ms Pie gave you good advice.
Me and mine get through this by honest communication.
I dont post much. I read it helps me understand some of what my husband is going through, as your posted question just did. Does your wife visit the forum? perhaps having her read this thread you started will help her too.