Unfortunately I may have to walk away

[jayswife]

I can't begin to explain how bad things are now. Jay is so miserable and uncomfortable and angry with me. He's mad at me every single day. He's saying crazy things that he wants to sell the house. He's absolutely mean to me. Picks at me all day long. He's so uncomfortable and in pain. I know he's taking it out on me but working full time and taking care of him is a lot but then his nastiness towards me is putting me over the edge. He blames everything on me. Says no one listens to him, he hates his life, everyone has fun but him. It goes on and on. I can't do anything I have to suction him nonstop, reposition him every five minutes, he's hot and then cold, angry, he lays down and says that this is his life now always laying down. I have a knot in my stomach every second worried about what he's going to say next or complain about next. I cannot handle it. I'm sitting here panicking about how he's going to be when he wakes up. Only family member that helps is his uncle no one else comes around. Well my parents but they're having a hard time because of the way he's treating me. He got mad at me for not scratching his head enough and then wouldn't speak to my mom when she came to drop off food. He's so ridiculous and angry and mean. Walking away is the last thing I want but I can't go on like this.

 

[Narrowminded]

Jays - first and foremost - HUGE HUGS coming your way. If you can, feel me wrapping my arms around you. I cannot remember if this has been said, so forgive me. Has he been diagnosed with FTD? If so, then he cannot control what he says. Tillie is the wealth of info on this subject. I know it is very, very difficult to deal with someone like that. I won't sit and here tell you what to do or not to do, only you can judge your situation. Just know, I'm thinking of you and sending as many virutal hugs as I can.

Hugs,

Sue

 

[Lkaibel]

I would without a doubt arrange for a facility for Brian if he treated me that way, FTD or not. That is what I would do though, not to speak for anyone else or tell you what you should do.

I would suggest you first explore if he does in fact have FTD, as that will at least tell you what you are dealing with whatever is decided about his care.

I am sorry you are going through this. Talk about adding to the pain of the situation.

 

[affected]

I'm so sorry, I know your situation has been worsening for some time

I'll add to that huge hug.

Do you know what all your options are? I know none are good options, but can we help you figure how many options you have so you can make your own choice? You won't be judged here for whatever decision you end up making, you are just as important as Jay.

 

[Atsugi]

Two things:

When I worked at the VA, the veterans were often really very verbally abusive. Then I realized that they were doing me a FAVOR. When they spoke, they were giving me clues about what was really wrong. So every time I encountered a vet with a complaint, I took a different perspective. I looked at them as my patient. They had something wrong, and it was up to me to dispassionately look for clues in their words, their anger, whatever, to try to diagnose what was really wrong. Invariably, I felt much better, and so did they.

Failing that, I have one "final" piece of advice for CALS: It is bad enough that ALS will destroy our PALS' lives. Don't let it destroy you, too.

 

[gooseberry]

Steve had a lot of cognitive change that wasnt considered FTD. His personality went from sweet and passionate to mean tempered, sullen, forgetful. I think these changes were the worst for him. He said many hurtful things to my son and I that he wouldnt have said before als. I was at the end of my rope as well.

My only suggestion is to take him for an evaluation and see what options are best. It may be that visiting him daily is less stressful than caring for him. At some point, your feelings will affect his care and you dont want that. I know many have said to tell yourself it is the disease not the person but emotionally it feels the same.

 

[bigmark1954]

Absolutely no one should have to live under those conditions. FTD or not, you should never allow yourself to live in a hostile abusive environment.

Perhaps getting this off your chest may help a little bit.....but you need to make changes ASAP. You owe him the opportunity to change by specifically addressing your issues with him. If you can't communicate your feelings to him, plan B is to figure out how to walk away.

Gooseberry makes a good point of how we change mentally as we progress. It is funny how losing all hope and having our dignity stripped from us has a detrimental effect on our personalities.

I can't fix me...but I know how to fix everybody else.

 

[tripete]

I snap at my wife and hate myself for it. It was never who I was. I don't now why I do it I just do. I hope its not all I do, but I am no longer a good judge of myself. I try to remember that she is the most important thing to me but still I snap. I don't think it's what you are describing but it is a small example of what happens.

 

[affected]

I would just like to say to any PALS who come in and read this thread that we CALS, do understand a lot. We don't know exactly what you are going through, but we do understand that it's horrendous and of course you will all have bad days, snap sometimes, get frustrated and angry and not handle things well.

Please also understand that CALS need to be able to talk to each other about their needs and their feelings of what they can handle. This case is far more serious and it has been building for some time and beyond what any PALS would feel.

This does not reflect on any PALS here. We need to focus on the OP and her desperate needs and let her talk and work her way through this crisis as she has some huge decisions to make.

Jayswife, keep talking, now you have taken the step to say how bad things are, don't back down, we are here for you.

 

[pdcraig]

Hi Amy,

I'm sorry things have gotten so bad for you. You are entirely correct, you can't go on this way. No one should have to put up with this kind of treatment. There is a huge difference between snapping at someone out of frustration and being constantly under fire. Both PALS and CALS would have to be superhuman to never lose their cool from time to time but doesn't seem to be what you are describing.

To me, this sounds like someone lashing out. He's angry. ALS has taken his life from him but he can't do anything about that so you are the target. If he can't get past that, if all there's left is anger and loss, there isn't anything you can do to help. Nothing will be enough because you can't make ALS go away. You can't give him his life back. One of the hardest things to accept as a CALS is no matter what we do, we can't make our PALS want whatever life they have left. To make the most of the time remaining. They have to do that, then we try our damnedest to make it happen. That's where we meet in the middle.

You know Jay. In a previous post I think you said you'd known him for almost 20 years before you got married. You're the best judge of whether this is something out of character for him. Is it meds, is it FTD or is this him not coming to terms with the horrible curve life has thrown his way. There are options to explore for all three scenarios.

One thing to keep in mind, walking away now doesn't mean it's forever or that you have abandoned him. It just means something has to change.

Paul

 

[jayswife]

Thank you all so much for the support. I was afraid that I would be judged for thinking of walking away. I really don't think it's FTD when I think about how he was before ALS. He was always pretty demanding. I do realize I married him without truly knowing him. I knew him but not well enough. He's gotten so angry. He never thinks of me and he's impossible to talk to. It's like talking to a 5year old. I know I've been short on patience lately but it really is because of his attitude towards me. When I come home from work he barely says hi to me. When he gets his nightly meds he starts asking me about my past and past relationships. He accuses me of things and tries to make me feel like he saved me from bad relationships and loser guys and bought me a house and paid off my car.
But the situation now is too much for me to handle. He treats me as if I'm a terrible person. He's difficult about everything. Decided that he doesn't like the formula so I blend all his food. He sleeps on the couch so I sleep on the couch with him for half the night. He used to want to put his arm around me when we sleep and now it's as if he doesn't want to touch me. I cried yesterday and he smirked. He can't understand why I'm tired. He won't speak to me. All he talks about are his needs. Never asks how I am. I was sick for a week and he didn't ask me once how I feel. Brings me back to a few year ago, right after we got married I got pregnant. I started having pains and told him to call an ambulance or take me to the hospital. He acted like I was being a baby about a stomach ache. He didn't comfort me when I was in the ER in terrible pain and passing out. He didn't say anything when the doctor said to rush me to the operation area. I woke up having a blood transfusion because the baby was in my tube and my tube burst. My body was filling up with blood and I could have died. Two days after when I went home and said how the pain was literally taking my breath away and I never felt that before and his response was "well at least you'll get better". That should explain him a little bit.
I need to see what my options are because I can't live like this anymore. He's mean, demanding and looks at me with hate. He did agree to palliative care which I suggested yesterday due to his constant pain. Then said last night that they're not drugging him up and the pills he takes now is fine. But he's not fine. I just don't know what to do. If I walk away who will take care of him? I'm pretty sure no one.
I'm sitting here sick to my stomach wondering what today will bring. I would love to go to my nephew's bday party today but his uncle can't stay with him today and I have no one else. So instead of a couple hours with my family I have to stay in this house and be treated poorly.

 

[soonerwife]

Ugh, Jayswife, this breaks my heart... It sounds as if he has always had some lack of empathy.

I know that even without FTD, PALS change somewhat. My PALS memory is worse, he can't figure things out if they are too complicated and he seems like he doesn't think of others like he used to. My PALS is the most caring, loving sensitive, giving man I have ever known. At times, I have to say to him, this will help me... Then he will allow things.

What I am trying to say is that I believe ALS can make things so much worse if they already had say "lack of empathy."

I would start checking my options... Where is Jay in his progression? Could hospice help?

After I came up with a plan, I would then be very frank with my PALS and let him know what had to change or this is what I am going to do... I would definitely come up with a plan first though. Chances are, he won't be very happy with what you tell him.

No one should have to live with abuse... We are here for you! HUGS!

 

[jayswife]

He has little strength in his legs to help me stand him up, no use of arms, I am pretty much the only one that can understand what he says now. His neck hurts all the time and he's starting to have a hard time holding it up. His shoulders hurt all the time as well. Breathing is a bit of an issue if he's on his back. He barely ever sleeps. Sleeping pills don't help. Doctor mentioned hospice but Jay refused and when I brought it up he said I'm giving up on him. But I do think it may be time. Not sure though??

 

[Atsugi]

I have always believed that PALS must be supported, and must get anything they need and want.

Marriage is a contract.
Contracts require both parties to keep their promises.
At the very least, people must always be somewhat kind to each other.
Sure, he’s broken the contract by not treating you decently, but you know much of that is not his fault--he's a broken man.

You know that if you stopped caring for him yourself, a few things would happen:
You might feel terribly guilty the rest of your life.
Many people would judge you badly.
He would pressure you like you’ve never by pressured before.
He’ll write you out of the will and the insurance.
You would need somewhere to go where you could start a new life.


All that said—and I’m sure there is more to consider—I have noticed that no matter what life throws at us, we tend to survive.

So I have this advice.
I’ve never, ever said this before to any CALS, but…
ALS is his problem, not yours.
If ALS is going to kill you, you must defend yourself.
I would support you whatever you do.

 

[affected]

jayswife what are your options?

I know you say you may have to walk away, but what could that look like - is there more than one way that could happen?

What I mean is, could you say to his uncle, I'm leaving for a week to work out what I will do and you are in charge of him. You may want to look at facilities for him while I am gone.

I'm not saying that is what you should do, just saying there is one possible option, what other options do you have?

Note - you may have to be prepared to do something and be very firm in simply saying and doing something, rather than asking for help or permission.