I LOST it !

[HeatherFeather]

Oh, man....did you ever feel so unappreciated? I feel so very very hurt right now.

There's nothing I won't do for Ron...NOTHING...I would give my very life to protect him.

We had our friends over and Ron's sister and husband over. Ron had to go to the commode and he was having painful cramps so he told me this. I walked fast to the bedroom to make sure there was nothing in his way before I wheeled him there to the lift and commode. So I hurried back to him and wheeled him into the bedroom, got him on the lift and down on the commode.

Later on I found out that he told my friends and his sister that he didn't know where I was and he needed help getting to the commode FAST and that I'm ALWAYS taking off on him. My friend KNEW that this wasn't so but his sister complained that I should be helping him. WHAT?

After they all left, I let loose. I'm sorry but I felt so hurt that he should say something like, I'm ALWAYS taking off on him. I was trying to get things out of the way, in case they were. I don't move fast enough for Ron.

I am TIRED...I yelled...I slammed doors...I threw things - all-in-all I had a total temper tantrum and that's not me at all. He was sorry, and started crying. After being his 'wing man' since he was diagnosed and going overboard to make him special clothes and making sure he's loved and taken care of, and spending a fortune for special clothes for his birthday and our upcoming cruise - things that I couldn't make by myself; catering to his every need - being at his beck and call and I get THIS COMMENT from him to others? That made me look like such an uncaring person in the eyes of his sister (but not my friend at least)

Anyway, I put him to bed, made sure he was positioned correctly, gave him his Rilusole and Ativan, put on the fan and the humidifier and left him there to come downstairs to the computer. I am sooooo tired but I can't sleep...

I told him that when his friend comes to visit for a week and a half, I'm going to take off for a few days but I don't know if I could do that.

I feel like he slapped me in the face...

 

[GilWest]

Mom told home health I wasn't taking care of her one time. They're just desparate and afraid is all. That's why they say these things. Hurt feelings are miniscule comapred to what is happening to them.

 

[HeatherFeather]

Mom told home health I wasn't taking care of her one time. They're just desparate and afraid is all. That's why they say these things. Hurt feelings are miniscule comapred to what is happening to them.

Very true, but just curious as to how you felt when you found out about what Mom said about you?

 

[Gembead]

Sending you hugs Heather, I havnt experienced this yet as my hubby isn't as far along this journey as you and Ron are.
I think because you are closest at hand and are able to everything you could before his disease that you are the easiest one to pick on dispite all your loving and caring for him, he knows that you will forgive him..
Love Gem

 

[affected]

Oh Heather, I cried when I read this as I remember this behaviour!

Chris was so paranoid about every little thing and wanted me to be there beside him all the time and I actually learned to give him a running commentary.

example - I'm just going to check that the pathways to the toilet are clear and that the commode is ready, then I will be right back to get you.

example - I'm just going to the toilet but will come straight back (and then have to remember to come straight back how easy is it for a carer to walk out of the toilet door and remember something they forgot to do and start doing that!)

If I left the room for 5 minutes I would come back and he would ask me why I had just taken off yet again and left him all alone.

It became easier for me to give a running commentary to prevent his fears rising before leaving the room than face accusations on entering the room again.

Not good behaviour, but I found that it made a big difference.

When he could use his hands he would text his kids and say things like - don't worry about coming to help Katrina is just trying to control my whole life.

I was extremely grateful when anyone witnessed anything as it didn't happen often and they would understand that he was being unreasonable.

I'm so sorry you went to the point of a tantrum, because it just kind of leaves you exhausted afterwards. Still, done is done, and if it makes him sit back and think a little, it will be worthwhile. You may even consider apologising to him in a day or so - ONLY for having a tantrum, but use the apology of how you reacted as an opening to explain to him that his behaviour had truly hurt you and that you are not perfect but you are human and doing your best.
This may then be a good lead in to how badly you need respite, and that the critical role of carer respite in sustaining long term care is well documented and you do intend to organise a few days off.

Then you have to stick to it. If you back down, he will only believe he can bear the odd tanty if he can just treat you how he wants.

I agree there are valid reasons he is behaving badly, what he is going through is the absolute worst thing anyone can be faced with. HOWEVER, he is your husband and you are his wife and respect between you both is still something that should be expected and can be done.

OK, lecture over my girlfriend in pain, I hear ya and your needs are screaming at me and they are totally as valid as his needs.

 

[cheerleader]

Heather, I suspect there isn't a CALS alive who hasn't experienced at least one total loss of control, frustration and moment of complete lack of appreciation! Once my hubby told me that I just didn't care about him! Like you, I lost it! When you give everything to show your love and caring, putting their needs above all else, that is a bitter pill. But maybe your losing it was a good thing! For me, hubby NEVER said anything like that again! Just know you are his safe
Harbor - and his total lack of control in his life and the frustration that he feels needs an outlet- and you happened to be it. Hang in there, girlfriend! This ain't an easy road we travel!

 

[HeatherFeather]

WOW, after being on the computer for a few hours, I curled up on the couch and fell asleep for another few hours, with the baby monitor by my side. He didn't call me to turn him or anything. Guess after my rant, he figured he'd better leave me alone!

 

[HeatherFeather]

Sending you hugs Heather, I havnt experienced this yet as my hubby isn't as far along this journey as you and Ron are.
I think because you are closest at hand and are able to everything you could before his disease that you are the easiest one to pick on dispite all your loving and caring for him, he knows that you will forgive him..
Love Gem

Gem, I guess I should be used to it because even before he got sick I was always his target for blaming...

 

[HeatherFeather]

Oh Heather, I cried when I read this as I remember this behaviour!

Chris was so paranoid about every little thing and wanted me to be there beside him all the time and I actually learned to give him a running commentary.

example - I'm just going to check that the pathways to the toilet are clear and that the commode is ready, then I will be right back to get you.

example - I'm just going to the toilet but will come straight back (and then have to remember to come straight back how easy is it for a carer to walk out of the toilet door and remember something they forgot to do and start doing that!)

If I left the room for 5 minutes I would come back and he would ask me why I had just taken off yet again and left him all alone.

It became easier for me to give a running commentary to prevent his fears rising before leaving the room than face accusations on entering the room again.

Not good behaviour, but I found that it made a big difference.

When he could use his hands he would text his kids and say things like - don't worry about coming to help Katrina is just trying to control my whole life.

I was extremely grateful when anyone witnessed anything as it didn't happen often and they would understand that he was being unreasonable.

I'm so sorry you went to the point of a tantrum, because it just kind of leaves you exhausted afterwards. Still, done is done, and if it makes him sit back and think a little, it will be worthwhile. You may even consider apologising to him in a day or so - ONLY for having a tantrum, but use the apology of how you reacted as an opening to explain to him that his behaviour had truly hurt you and that you are not perfect but you are human and doing your best.
This may then be a good lead in to how badly you need respite, and that the critical role of carer respite in sustaining long term care is well documented and you do intend to organise a few days off.

Then you have to stick to it. If you back down, he will only believe he can bear the odd tanty if he can just treat you how he wants.

I agree there are valid reasons he is behaving badly, what he is going through is the absolute worst thing anyone can be faced with. HOWEVER, he is your husband and you are his wife and respect between you both is still something that should be expected and can be done.

OK, lecture over my girlfriend in pain, I hear ya and your needs are screaming at me and they are totally as valid as his needs.

Tillie

OMG Tillie, Chris sounded so much like Ron! I think that's what I'll do - I'll give him a "running commentary" so he knows I'm not just going to "take off and leave him there"

"You may even consider apologising to him in a day or so - ONLY for having a tantrum, but use the apology of how you reacted as an opening to explain to him that his behaviour had truly hurt you and that you are not perfect but you are human and doing your best." -oh I explained all this last night to him and basically told him I wasn't his enemy and I would turn myself inside out to help him - I just can't move any faster than he wants me to, etc. etc...

Thanks so much, Tillie - you are such a sweetheart xoxoxo

... and all of you out there who are caregivers, and are listening and know that eventually you will go through moments like this, if you haven't already. You are in good company...

 

[HeatherFeather]

Heather, I suspect there isn't a CALS alive who hasn't experienced at least one total loss of control, frustration and moment of complete lack of appreciation! Once my hubby told me that I just didn't care about him! Like you, I lost it! When you give everything to show your love and caring, putting their needs above all else, that is a bitter pill. But maybe your losing it was a good thing! For me, hubby NEVER said anything like that again! Just know you are his safe
Harbor - and his total lack of control in his life and the frustration that he feels needs an outlet- and you happened to be it. Hang in there, girlfriend! This ain't an easy road we travel!

Sigh... Well, today's another day, right? xoxoxo

 

[DreamsEnd]

Heather, I cried too when I read your post about losing it. Loved Tillie's loving (as always) advice but sometimes just having a tantrum might be a good thing like the relief valve on a pressure cooker. Lord knows the pressure we CALSERS are under is enormous and without any real relief.

Sending you big hugs,
Sherry

 

[azgirl]

Oh man, my husband and I both lost it yesterday, too. Lots of loud angry words and tears. It was a first for us. He thinks I'm not appreciative of his efforts, I think I am, but will try even harder.

He's just so sad, thinking about life alone that he can't seem to enjoy what time we have. I'm so sad watching him work so hard because of me.

Today is better. You're right that it was like a pressure cooker that needed released.

This disease sucks, but we are determined to get through it together. Guess we needed to hit the reset button. Hope that works for you and your husband, Heather.

 

[slopokahontas]

I can only imagine how hurry you were by his comments. You wouldn't have blown up if you didn't care. I imagine it's normal to have a few blow ups here and there because we are all trying to remain strong all the time and keep some feeling potent up! Being a caregiver is such a hard job and my heart goes out to you. If anyone has the nerve to judge you or believe his words, just remember those same people might be pit in a situation close to yours one day, and will look back to this situation in a more sympathetic way. Go easy on yourself!

 

[skipper66]

Heather,
I am concerned about you? What antidepressant are you on now? If any. Are you seeing a counselor? All your feelings are definitely valid and very real. But, I'm very concerned about depression settling in on you causing your tantrums and your insomnia. I desperately think you need a respite for a few days and the sooner the better.
I am so sorry that your were hurt by your husbands words. But, as others stated you are the one closest to him and so you unfortunately are going to be the one taking all the blunt for his frustrations. I think you should calmly discuss that you were hurt with your husband. I don't think you necessarily need to apologize for being human. Every single post you have written that I have seen on here or on f.b. the love for and dedication for your husband has come right through them.
You are doing a wonderful job Heather. There are alot of people who would just run for the hills in the situation that many of you CALS are in. You all don't give yourselves enough credit. I am not my dad's CALS and just sitting on the sidelines watching my dad go through all this is stressful enough. All of you are dealing with it everyday. You are all wonderful and are living your vows that you made when you married your spouses. You are standing by each other. Hugs, Kim

 

[MaxEidswick]

>This disease sucks, but we are determined to get through it together. Guess we needed to hit the reset button. Hope that works for you and your husband, Heather.

double Ditto that!