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Ryan,
Has your wife explored drawing or painting on the computer, tablet or phone? There are many ways to access those apps and to use the outputs in print or digitally, and it can be creatively satisfying.
 
I couldn't agree more with Barbies advice.. Don't fall into the trap a lot of us did and Caregive to the point of burnout.. It feels like the right thing at the time. But sadly it Will make it tougher on All of you if you don't start slowly but surely having people help with things. Little steps at a time and it may be easier for your wife to realize it's good for all of you. I was warned and didn't listen and I'm paying the price now. Sending you and your Family happy Thoughts
 
Ryan,
Has your wife explored drawing or painting on the computer, tablet or phone? There are many ways to access those apps and to use the outputs in print or digitally, and it can be creatively satisfying.

She has a tablet and a graphics pad to draw on but doesn't use either. This all started in her arms and her arms are taking a big hit. She is has been having trouble writing. Normally she cramps up after writing a few words and waits out the cramp to write a few more. I am hoping that she will be able to take to the drama team pulling her in to help be creative.
 
Maybe you could set up a weekly date night for the two of you where the baby goes to a friend's or grandma's for a few hours and you guys go see a movie and out to dinner, or watch a movie at home and have a candlelight take out meal.
hugs

I have begged for this! :)
Even if it's just laying on the couch without the baby... It never happens though. As for progression, her arms have been hit heavily and her lungs. It's started moving down to her legs... Biggest problem is the fatigue which im guessing is a by product of the diseases path? Sorry, im a software/developer/tech guy.. I don't know the terminology..
 
She doesn't have to use her arms. There are head mice, feet mice, eye gaze, and switches that can be activated with pretty much any muscle that attach to any device for use with a virtual keyboard and creative apps. If you tell us what platform(s) she's on, we can suggest free options to try. For example, iOS can be used using the head as a switch via the camera, by changing the accessibility settings.

And of course I should have mentioned voice-controlled apps, through Dragon, etc.
 
Hi Ryan, Welome. I'm sorry though that I have to welcome you here. I definitely feel your pain. Others have made many very good suggestions. You mentioned that your wife will no longer take anti-depressents since the birth of your daughter. One thing you both should know is that there are many. No particular one is good for everyone. See if she will explore something different. Maybe something more slated for anxiety would be better for her? It's a thought to get you thinking.

As Laurie mentioned there is a lot you can do with a computer with alternative means that doesn't require arms or hands. I'd look into that, and since you are in the tech field, you'll have an easier time understanding those. I'm sure she could work a graphics program or CAD that could help her draw again. My husband actually taught someone to use Corel Draw, by doing nothing but talking him through it. At the time, he could talk. Now he has designed products, just using a switch. He has no movement at all.

A meal train would be huge for you. While she may not like it, make sure that everyone who is involved knows your likes and dislikes or any restrictions you may have with food. They really are a blessing.

I also second an in-home nanny that would help your wife be mommy. One who could kind of take a backseat of sorts, just be your wife's hands. Hopefully, if things would work well, the two of them would become friends. You could get work done, and she would have someone to talk to in your absence.

Currently I'm going it alone with my husband, but our children are grown. They do help. Unfortunately we don't qualify for help, and I can't afford to hire it. However, if someone offers a meal, I take it. I highly recommend that you get help whether she agrees or not. For now, it doesn't have to be with her necessarily. Trust me when i say, if your family will help, take them up on it and you are very lucky.

I would also check with your local ALS Assoc. I do get a small grant from them that gets me a nurse from time to time. It's huge. Maybe she would allow an OT to come and assess the situation and make suggestions. Sometimes those suggestions coming from a professional outside the home are easier to accept.

I'm wishing you well as you attempt to work all of these things out.

Hugs,

Sue
 
She doesn't have to use her arms. There are head mice, feet mice, eye gaze, and switches that can be activated with pretty much any muscle that attach to any device for use with a virtual keyboard and creative apps. If you tell us what platform(s) she's on, we can suggest free options to try. For example, iOS can be used using the head as a switch via the camera, by changing the accessibility settings.

And of course I should have mentioned voice-controlled apps, through Dragon, etc.

Already on that. I have started integrating our home with smart plugs to voice command them through our Echo. Easy and very helpful. Our TV also is controlled by voice. Working to improve it.. But its working for now. I can develop an app if needed but so far things are working for her.
 
I'm sorry for what you're going through. With regards to childcare, what about a mothers helper? You hire a middle school or high schooler to come and help out with your daughter while everyone is there. It frees you up to get other things done, run errands or spend time with your wife without having to worry about How it's going wth the babysitter. Mothers helpers are less expensive too.
 
I just want to thank everyone for the help today... Just this little bit has helped to know that im not doing it alone. I have been beating myself up thinking that I am failing my wife when in reality, there's no right way to go about this. Everything I seem to be doing is on par with how I should be doing it. One thing I do have to say about my wife, her spirit and faith are strong. Our love for each other is strong too... Nothing is ever going to change how much I love and care for her. I fear the day that I no longer get to look into her eyes but I know that day will only be temporary. My faith and spirit has grown stronger through this as well.

Quick story... Recently we went on a marriage retreat with 15 couples from our church. We fought it all the way there.. "Why are we even doing this?" "Everyone is here to fix their marriage or make it stronger... We could have done something different..." True, we could have, but we didn't. Now most everyone at our church knows us and knows the situation. Our church is about 300 or so members strong. However, we sit in the front row and at the time, didn't really know that many of the members. We had only been going to this church for about a year. Some of her family goes there and we fell right into place with them but, again, hadn't really been the social butterflies we should have been. So, retreat... Long story short, we realized on the last day that we were there for everyone else, not ourselves. Everyone seeing out we interacted with each other, how much I did for her without losing any joy or complaining. No one had really seen us up close and seen what ALS really is. In the closing "huddle" a few shared how little their marital problems were compared to what we are going through, yet we're still by each other's side. We shared a little more and the retreat ended with everyone hugging and in tears but stronger. So, we were at the retreat for them, not us and in return, we got a blessing. Doesn't mean it made things easier... but I have this memory to hold on to and to share. I am smiling from ear to ear now just typing about it.
 
I'm sorry for what you're going through. With regards to childcare, what about a mothers helper? You hire a middle school or high schooler to come and help out with your daughter while everyone is there. It frees you up to get other things done, run errands or spend time with your wife without having to worry about How it's going wth the babysitter. Mothers helpers are less expensive too.

My wife's mother would be here in a heartbeat. If my wife would agree, I would setup a "tiny home" outside for my mother-in-law and she would be here 24/7... However, that wont be happening anytime soon... if ever. The problem with where we live is that it's hard to find helping that wont rob you blind.
 
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Ryan,

Does your MIL live close? You mentioned she'd be there in a heartbeat. What if she just started dropping by a bit more frequently. Kind of slowly just work her way into helping. Grandma's always love an excuse to see their grandchildren and she could beg off that it was that. Once your wife saw the help it could be, she might agree. Would have to be slow, once this week, twice next week and for a couple of weeks, then maybe 3 times. If she lives farther, popping in for a weekend would be reasonable too.
Just a thought.

Hugs,

Sue
 
Sue,
I started out asking my wife to have her mom come by. Each time my request was denied. I let that go on for a while to keep the peace. A few weeks back, I felt on the verge of a breakdown so I just got in touch with my MIL and told her I needed her help. She knew this would be met with resistance but she came anyway. This worked for 2 weeks and now we're back to not allowing anyone to come help.

It's lose lose... I don't get help and I stay overwhelmed.. or I do get the help and suffer my wife's punishment. Normally it's a good lashing but sometimes it's a argument. Depends how her mood that day. I am tough enough to let anything roll off my back but I don't want what time we have left together to be bad. I want to spend our time making memories, taking pictures and videos... whatever... all these things though to share with our daughter.
 
Ryan,

I think you need to have a heart to heart with your wife. Explain that you are very overwhelmed and cannot make happy memories with your daughter and her when you can barely stand. You need help for you, not for her. Approach it as best you can from that direction.

Explain to her that you realize this is very difficult for her, and this is not a reflection on her or her abilities, it's a reflection on you and that if you don't get help, you'll land in the hospital and will not be able to help her at all.

Unfortunately , no matter how much we try, we cannot do it all and at some point our PALS need to accept that. It may cause an argument for the short term, but if she can see that you are more patient and loving with her when help is there this should help her accept it. If you can, when help comes, go out of your way to be pleasant. Let her see a difference and there will be if you are not as overwhelmed.

It's hard, believe me I know. Been at this over 12 years since start of symptoms, but I'd be done if I didn't get help once in a while.

Hugs,

Sue
 
Ryan, you are waiting for permission to do things that need to be done and it doesn't sound like it will happen. just do it. set up the babysitting, the helpers etc. I have always heard it is easier get things done if you beg forgiveness afterwards rather than ask permission first.

every one us have been there. we are all giving you the same advice and you are throwing up road blocks just like her. just do what needs to be done.

by the way, my husband actually taught himself how to photoshop after losing all function. he ran his mouse with his eyegaze and his big toe. it was amazing to see him colorize old family photos. then he could email them to Walmart and have them mounted and mailed to family as gifts. I have a girl friend who's husband would have his kid dip a paint brush in paint and put it in his mouth. he painted beautiful abstract paintings in the garage and had never painted before. he loved it. creativity can find a way--she just has to allow it.
 
I agree with getting it sorted rather than allowing your wife to bully you into submission. Wow that sounds harsh! But that's how it reads to me. If you feel the situation is lose lose then something is very wrong and this is not an example of a great marriage relationship - it's an example of one person giving until the are emptied. I say this with the greatest of respect, after watching this thread unfold and you constantly reject every idea of how to solve your distress. It seems you have been pushed into a corner.

Has your wife always been like this?

There could be some cognitive/behavioural changes if she was not always like this, but regardless you must make this sustainable.

At one point I had this talk with my Chris. The next day he informed me that he didn't feel I could cope and wanted to go into a nursing home when he became high needs. I immediately organised respite at one that would have taken him and we went to check it out. He did a quick about face (without even staying there, just after seeing the place) and even though he grumbled and complained and carried on still, he accepted me organising increasing help even though he never believed he had become high care needs.

Do it with a lot of thought for her dignity and wishes, but sort it out or you will burn out and then you are both in deep trouble.
 
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