I can’t say or do anything right.

[Kristo]

I really feel for you, this disease really does turn our loved ones into strangers, but it’s the constant dipping backwards and forwards between the person we know and the dementia person that is so confusing and frustrating. I had to teach myself to “see” a dementia patient every time I looked at my dad… he looked and sounded like my dad but I had to tell myself that it wasn’t really him. Then he would say something really insightful (and normal!) and the confusion would hit all over again!! He has just gone into care, and the staff all say that he is delightful, so he must be happy there - I just wish he could have been that happy at home. Sending you all strength in this exhausting battle, that none of us ever imagined we had signed up for! X

 

[Bren43]

A vent coming so be prepared. It’s a long ‘un.
I am sick and bloody tired of being shouted at and sworn at for what, to me, was the most innocuous of remarks. Take yesterday for example. We struggled together to get a no longer needed propagator back into its box to store in the shed. OH started to carry it out the back door and I followed him and said, ‘come on, let me carry that down there’. The effing and blinding that ensued was amazing. Ended up with him shouting at me that if I wanted to effing do it then I could effing well get on with it. You always bloody do what you want anyway. In he stalked slamming every door he passed through. He spent the rest of the afternoon in his room with the door shut.

Today, I asked him to drain some water out of the overflowing water butt at the end of the garden. Drain it into a plastic muck bucket. He asked where to put the water. I told him I normally tip it out under the back gate (into a rarely used grassy alley). He said the water wouldn’t go under the gate. Like a fool I said ‘yes, it does, that’s what I do to drain it.’. I know, I contradicted him, shouldn’t have done that etc etc. A repeat performance of yesterday with swearing and cursing me.

Yes, I’ve read about compassionate communication. Yes, he probably feels I’m criticising but I CAN‘T Help it!!! I make what is to me a normal reply and it lights the blue touch paper.

Even my evenings aren’t my own as he sits there waiting, fidgeting and glancing at the clock until I ‘find some thing to watch’ for us both. If he starts to go up to bed before me (bliss, some time to myself even if only for 15-20 mins) I’m given warnings about not being too late, how he saw my light on late last night. (i was reading and trying to switch off). Sometimes he even comes back down again just to see if I’ve fallen asleep on the sofa. I haven’t, I just want a bit of time without second guessing him and treading on eggshells.

Thanks if you’ve got through this, I just needed to vent to people who’ll understand..

Hello hilly jay,
you are definitely not alone,my OH is exactly the same.he is disabled ,so not able to get around,so he sits and verbally abuses me and tells me that everything I say or do is wrong. I used to get upset and have a few tears but am now harden to it. When possible I leave the room and find something to do out of his sight. It is very hard to bite my tongue and some times I can’t,but then it ends up me feeling worse as he blames me for the bad feeling. I know what I’ve said doesnt help you but at least know that you are not alone.

 

[Gosling]

Thank you for ranting. I thought I was so alone in the struggle. Its been a tough few days.

Hello and welcome @strugglingstar to this friendly and supportive forum. There is a wealth of shared experience of dementia to be found here, so I am glad you have found us.
You are never alone here. This cruel disease is so tough, but you will find here people that really want to help, offer advice where needed, or just be a listening ear. Putting down on here just how you are feeling can help, and knowing that you are not alone in this struggle I hope you will find of some comfort.
Do have a good look around the forums and ask any particular questions you may like to. You will always find sound advice and understanding.

 

[hillyjay]

Hello hilly jay,
you are definitely not alone,my OH is exactly the same.he is disabled ,so not able to get around,so he sits and verbally abuses me and tells me that everything I say or do is wrong. I used to get upset and have a few tears but am now harden to it. When possible I leave the room and find something to do out of his sight. It is very hard to bite my tongue and some times I can’t,but then it ends up me feeling worse as he blames me for the bad feeling. I know what I’ve said doesnt help you but at least know that you are not alone.

Thank you, @Bren43. As @strugglingstar says, it’s just good to hear others feel the same way and understand. When you bite your tongue doesn’t what’s been said still rankle inside? As someone else said, (sorry, I can’t remember who) it’s the swinging between dementia OH and almost normal OH that lulls you into false sense of security. You say something or answer as you always have done but suddenly it’s not ok anymore.

 

[hillyjay]

Thank you for ranting. I thought I was so alone in the struggle. It’s been a tough few days.

Hi, if you want to offload about the last tough few days then you know where to come. x

 

[Bren43]

Thank you, @Bren43. As @strugglingstar says, it’s just good to hear others feel the same way and understand. When you bite your tongue doesn’t what’s been said still rankle inside? As someone else said, (sorry, I can’t remember who) it’s the swinging between dementia OH and almost normal OH that lulls you into false sense of security. You say something or answer as you always have done but suddenly it’s not ok anymore.

That’s right,you still feel it burning up inside that you’ve has to back down and accept the abuse just to keep the peace. I admit there are times when I get so annoyed that I react but then OH becomes more abusive when he thinks he’s got me upset and that’s when I have to give in and walk away. I pften compare him to Jekyll and Hyde!

 

[wizbang]

Az has brought out the worst aspects of my OH personality. He has always been a bit isolating and controlling and we lost a few friend (passed away- for assorts of reasons). While I worked it wasn't so bad but I lost count of the invitations I turned down until I stopped being asked- we have no friends and I am really on my own with this.
I swear if he was a mass murderer and got to the pearly gates he would talk St Peter into believing it was all HIS fault. OH cannot possibly be wrong- but I get so sick of not arguing, not correcting, not criticizing -because the AZ patient has to be humored!
So I really understand your frustration. wish I had your strength.

 

[strugglingstar]

Thank you all so much for the welcome.
OH took phone call for appt for clinic when I was out and as expected answered he didn't know what I was doing (despite everything I do written in his diary) and the diary was free! so wouldn't book it- he then couldn't understand that when he phoned back 3 hrs later the appointment had been given to someone else. So at least one booked but its 5 weeks away instead of the 10 days that he was offered. At least we are at the stage of appointments which is great. Thanks for a great forum.

 

[hillyjay]

Thank you all so much for the welcome.
OH took phone call for appt for clinic when I was out and as expected answered he didn't know what I was doing (despite everything I do written in his diary) and the diary was free! so wouldn't book it- he then couldn't understand that when he phoned back 3 hrs later the appointment had been given to someone else. So at least one booked but its 5 weeks away instead of the 10 days that he was offered. At least we are at the stage of appointments which is great. Thanks for a great forum.

Good that you’ve got an appointment but what shame you couldn’t have the earlier one. Reasoning is useless I find. I’ve reached the point where I’ve told the surgery that all calls for him come to my mobile.

No liaison between hospital and surgery however. When he had a TIA, (fortunately very minor one) when he was out with the dog it was the TIA unit who rang our landline. OH snatched the phone and proceeded to tell all sorts of rubbish which the doctor listened to as I hadn’t been there at the time, noted down.

According to OH, no, he hadn’t fallen down, he’d just ‘felt a bit funny and so decided he’d better sit down which he did’. In reality he’d come home with grazed, bleeding knees and elbows and told me and my son he’d fallen over. He‘d also been walking the dog by the sea in another town half an hour away from here according to him. We don’t have transport but hey, it all got noted down.

As I said at the beginning of all this, reasoning is useless. I later asked OH if he’d not fallen how come he’d grazed and bloodied his knees and elbows. He told me it had been difficult to get up again so he must have scraped his knee as he got up. And his elbows???

Get to that phone before he does or get your number as the contact number. It pays to be devious.

Apologies for the long post!

 

[Kevinl]

Never feel the need to apologise to us lot on here, we're all here to help if and where we can.
Long post often paint a picture that makes it easier to understand your situation and offer advice where possible. K

 

[hillyjay]

Never feel the need to apologise to us lot on here, we're all here to help if and where we can.
Long post often paint a picture that makes it easier to understand your situation and offer advice where possible. K

If you mean me, I’m afraid I do tend to rabbit away in long posts. Note to self, must do better! 😊

 

[Kevinl]

Yes, you hillyjay. You're doing fine, too many years dealing with it all gives you the right to have a rant and as I say long posts paint better pictures given that we are all strangers on here, well not me I'm just strange I say jokingly.
K

 

[hillyjay]

Ok, one more thing, I’m sick and bloody tired of having doors slammed in his moods!
Yesterday I was changing the sheets on the bed and he began fiddling about with the pillows and pillow cases. (he sometimes mixes them up or puts two cases on one pillow). I asked could he leave that just a minute…..
(I’d wanted him to help tuck the sheet in round the bed, kills me as I’ve got back problems and hip problems). I never managed to finish that bit. He got so angry because I’d asked him could he leave the pillows for a minute - shouted he was only trying to help and I was never happy and I could effing do it myself then. Stalked out slamming the bedroom door behind him.

Today, I’d got a load of washing on the line. He tends to bring things in still slightly damp and carefully put them on my bed. I had some new T shirts and tops put there I’d washed and I wanted to fold them carefully one at time. He went out to check the washing and I called to him to Leave the stuff there. He began unpegging things. I shouted to LEAVE it there please, I’ll get it in a couple at a time, He continued. Came in and dumped them all in a heap. I picked one thing up and shook it to get creases out and began to fold it, next thing he’s picked the rest up, screwed them up and dumped them again before going back out into the garden slamming the door so hard I honestly thought the glass might break.

Doesn’t sound too important, all little things. Ok, so maybe I shouldn’t tell him not to do anything at all as he takes this very badly. I know I shouldn’t answer back or argue either. But I feel so bitter about it. About the whole damned thing.

 

[Knitandpurl]

Ok, one more thing, I’m sick and bloody tired of having doors slammed in his moods!
Yesterday I was changing the sheets on the bed and he began fiddling about with the pillows and pillow cases. (he sometimes mixes them up or puts two cases on one pillow). I asked could he leave that just a minute…..
(I’d wanted him to help tuck the sheet in round the bed, kills me as I’ve got back problems and hip problems). I never managed to finish that bit. He got so angry because I’d asked him could he leave the pillows for a minute - shouted he was only trying to help and I was never happy and I could effing do it myself then. Stalked out slamming the bedroom door behind him.

Today, I’d got a load of washing on the line. He tends to bring things in still slightly damp and carefully put them on my bed. I had some new T shirts and tops put there I’d washed and I wanted to fold them carefully one at time. He went out to check the washing and I called to him to Leave the stuff there. He began unpegging things. I shouted to LEAVE it there please, I’ll get it in a couple at a time, He continued. Came in and dumped them all in a heap. I picked one thing up and shook it to get creases out and began to fold it, next thing he’s picked the rest up, screwed them up and dumped them again before going back out into the garden slamming the door so hard I honestly thought the glass might break.

Doesn’t sound too important, all little things. Ok, so maybe I shouldn’t tell him not to do anything at all as he takes this very badly. I know I shouldn’t answer back or argue either. But I feel so bitter about it. About the whole damned thing.

I find it’s the ‘little’ things that get to me most too. The big things are somehow much easier to deal with emotionally. That phrase ‘I was only trying to help…..’ along with (in accusatory tone) ‘I can’t do anything right….’ and (in same sarcastic tone) ‘It’s always my fault’ echo down the years. My Mum used to say all these things too, in her case going back to my childhood, long before dementia ever raised its head.

 

[hillyjay]

I find it’s the ‘little’ things that get to me most too. The big things are somehow much easier to deal with emotionally. That phrase ‘I was only trying to help…..’ along with (in accusatory tone) ‘I can’t do anything right….’ and (in same sarcastic tone) ‘It’s always my fault’ echo down the years. My Mum used to say all these things too, in her case going back to my childhood, long before dementia ever raised its head.

That’s it! ‘I was only trying to help…’ in that accusatory tone and then the s etc - the very same words. I’m sorry that your Mum used to say things like that too, it must make hearing them all over again so much worse and bring back all those memories.

Yes, I agree, in some ways it’s the ‘bigger’ things that are easier to deal with emotionally.

 

[hillyjay]

Yes, you hillyjay. You're doing fine, too many years dealing with it all gives you the right to have a rant and as I say long posts paint better pictures given that we are all strangers on here, well not me I'm just strange I say jokingly.
K

Thank you @Kevinl. Probably depends on how long the posts are and if anyone manages to make it to the end before nodding off😀 I’ll bear in mind your joking ‘confession’. Always good to know these things😁