Who has stolen my husband?

[Sad Staffs]

B, it's me, Kindred, back on line for a little while. This post of yours is so telling that your husband is within reach of his old self. I used to feel my husband's old self had gone, to be replaced by Mr Angry all the time, day and night. Then he had the accident that landed him in A and E and eventually in his current nursing home. But the strange thing is that when I visited him in hospital for the first time, his old self, although demented, was back and his first words to me were; how have you been so wonderfully kind to me all these years.
And he continued in this way until now, when he can no longer really communicate meaningfully but gives me such loving looks. I cannot account for this. Unless he was reflecting my own anger and tension when we were still together, or the accident somehow jerked the brain. It is a strange thing to happen when I too, thought that side had gone forever.
I am longing to share your lilttle pusscat adventures with you!
with love and best, Geraldinexxxx

@kindred
Dear Geraldine, so so lovely to hear from you. You always make me feel better. You are such a special person, thank you x
I will never understand what is happening to my husband, to me, to us.
It’s designed to make us Carers feel as if we are the confused ones. It’s like floundering in the dark all the time. I will never understand, but perhaps that is because I don’t want to?
I can’t wait to get our little cat. She is white, one blue eye, one green eye and profoundly deaf. She isn’t yet 12 months old, so has just been neutered. I have a large list of things to buy for her, to keep her occupied. We see her on Saturday, then pick her up after The vet has checked her wound. I haven’t looked forward to anything for so long....
Take care Geraldine, thank you for always being there for me.
I hope your gorgeous blue eyed boy, Keith, is doing well after his seizure. And I hope you and your hip are getting stronger, more comfortable, and much less pain and discomfort.
With much love to you, B xx

 

[Dutchman]

I know I’m talking about feelings that I’m not along in having but it’s 5.20am and it’s killing me. She is tolerating me me as her dear friend, letting me me share her bed. The love, the tenderness, affection, kissing my hand, all the special feelings for me as her husband are gone and and don’t how I’m going to cope if they don’t return. When she had a moment of clarity yesterday, just for a couple of hours and hugged me and recognised me, didn’t ask who’s clothes these are, it was heaven and joy. Now I reallly fear for the future and wonder if I’m strong enough like many of our fellow dementia carers.

 

[Sad Staffs]

I know I’m talking about feelings that I’m not along in having but it’s 5.20am and it’s killing me. She is tolerating me me as her dear friend, letting me me share her bed. The love, the tenderness, affection, kissing my hand, all the special feelings for me as her husband are gone and and don’t how I’m going to cope if they don’t return. When she had a moment of clarity yesterday, just for a couple of hours and hugged me and recognised me, didn’t ask who’s clothes these are, it was heaven and joy. Now I reallly fear for the future and wonder if I’m strong enough like many of our fellow dementia carers.

I really feel for you @Dutchman .... it must be so distressing as you love her so much and want her back. I am, thankfully, not where you are now, but I know it will happen, one day. And it terrifies me.
I don’t look forward to anything unless I know it is something I can control. My husbands dementia is unpredictable, I can’t control or even understand it, so I don’t look forward. I just deal with each hour as it comes, because that is how unpredictable he and our life now is.
I’m sorry I don’t have any words of wisdom for you, but I’m thinking of you.
I don’t think you can change how things are, none of us can, until the inevitable and they go into care. For me, I hope, this will be a last resort.
Who knows. I have no idea what the next hour is going to bring. I just try to keep some semblance of control knowing that I’m better off today than I probably will be tomorrow.
Take care of yourself, B x

 

[AliceA]

Thank you Alice... I always welcome your wise, pertinent, sensitive words.
My cousin who is very close to us gets angry at the way my husband looks for ways to criticise me or find fault all the time. I am so used to it that I very often don’t notice, it just washes over me. Last Sunday when the three of us were together he was mostly hosting so well. He was explaining about his far flung family. He stumbled over details, but he got there. But it was mostly pulled from some years ago, when it comes to the past few years he leaves that alone. I guess this is normal with dementia.
He is worrying about the little cat we are getting. Last night he couldn’t sleep in case she ran out the front door when a visitor arrives. I’m just pleased he has come to terms with us getting her.
It’s always lovely to talk to you, Alice. I do hope you are ok? I have been out of touch for a while. Building work finished now, decorating starts next week! Such fun!! Take care, with love, B xx

I am please the building work is out of the way, it causes such upheaval. You new family member sounds as if she will bring her own joy. Memory is a strange thing, something will sometime trigger a memory in an most unexpected way.
I have been busy arranging possible respite and care in an emergency as I have a few health issues.
If I were an animal I would curl up somewhere but I cannot do that. I think I shall need respite to get over trying to plan respite. I feel my plan must be near home so people can visit, one was over 50miles away.
So back to drawing board! I hope you will soon be straight. X

 

[Grahamstown]

I think I shall need respite to get over trying to plan respite

Me too, it’s very trying even when you have found somewhere suitable. It’s the idea of giving your charge up to someone else. This morning at the NT garden he could relate to the very small children who are running around and they waved at each other. It’s like starting your children at nursery school, anxious making.

 

[AliceA]

It is difficult isn't it. I am trying to keep awake as the car will bring him home soon. I slept a bit this morning. I hope he will be tired so we can both dose in our chairs. You must be tired after pushing a wheel chair. X

 

[Sad Staffs]

I am please the building work is out of the way, it causes such upheaval. You new family member sounds as if she will bring her own joy. Memory is a strange thing, something will sometime trigger a memory in an most unexpected way.
I have been busy arranging possible respite and care in an emergency as I have a few health issues.
If I were an animal I would curl up somewhere but I cannot do that. I think I shall need respite to get over trying to plan respite. I feel my plan must be near home so people can visit, one was over 50miles away.
So back to drawing board! I hope you will soon be straight. X

Thank you Alice.... I’ve just paid for the work. The company we use are very good at coming back if there is a problem. It’s important for me as it is all now on my shoulders and I get stressed by having to make serious decisions with no one to help. It’s tough isn’t it! It makes me feel very alone. The tiling man asked me if I wanted the tiles horizontal or vertical. I’d picked them, and the colour of the grout, and the metal strip. Horizontal or vertical was a decision too far! The floor man asked me a similar thing, did I want them straight on, or long ways! I wanted to shout just do what you think your mother would like!
All done now.... decorator starts next Thursday!! I just told him white ceilings and magnolia walls.... can’t get any more boring than that!!!
I’m hoping our little cat will bring a little life to our home. It seems grey at the moment, with so little warmth in it. I hope she will be a little ray of sunshine. The fact she is deaf is a bonus. I worked with deaf babies, children and young people. I feel Lily being deaf is bringing me full circle. We will see....
I wish you luck with your search for respite. I’m very sorry you have health issues. It’s our biggest fear, isn’t it? Being ill and not able to physically care for them anymore..
Take care of yourself Alice, with love B xx

 

[Dutchman]

I really feel for you @Dutchman .... it must be so distressing as you love her so much and want her back. I am, thankfully, not where you are now, but I know it will happen, one day. And it terrifies me.
I don’t look forward to anything unless I know it is something I can control. My husbands dementia is unpredictable, I can’t control or even understand it, so I don’t look forward. I just deal with each hour as it comes, because that is how unpredictable he and our life now is.
I’m sorry I don’t have any words of wisdom for you, but I’m thinking of you.
I don’t think you can change how things are, none of us can, until the inevitable and they go into care. For me, I hope, this will be a last resort.
Who knows. I have no idea what the next hour is going to bring. I just try to keep some semblance of control knowing that I’m better off today than I probably will be tomorrow.
Take care of yourself, B x

Thanks for those wise words. Taking it day by day is all we can do. She’s off to bed now. She refuses to agree I’m her husband so I’m left with few choices. Firstly, do I harden my heart and lessen the pain of being abandoned, just do the caring bit with less emotions. After all she isn’t receptive to my loving hugs or loving words...I’m not her husband. She sees an envelope addressed to me and wants to find that man so she aggressively makes me go to our nearest hospital to find him. I was there 2 weeks ago and she remembers this. You can imagine the anxiety as we move around the corridors with me with a hastily scribbled note saying ‘my wife has dementia ‘. My tipping point today after we returned home was when she wouldn’t take her pill. I explode, call her names, threaten and walk out for an hour. I just don’t care if she chokes on her sandwich (she didn’t and I do care) but when I’m that upset !!! When will this all end?

 

[Grahamstown]

You must be tired after pushing a wheel chair

I had the strangest existential experience this morning and afternoon. When with him I feel like I am failing and getting weaker by the day, and pushing him in the wheelchair was preferable to listening to him huffing and puffing and constantly wanting to turn back. He then wanted me to get into the wheelchair and push me. When I was describing our day to my daughter he whispered to me to tell her that he had done just that. When I went out after lunch by myself to pick up some things I felt very fit and bouncy so I cannot explain this. I really do think he wants me to be as weak and feeble as he is and resents me having an independent existence. This emerged when filling out the About Me booklet to take with him to the respite care home. He is developing this extreme dependence and I am more and more convinced that he needs to be able to accept other people who can look after him. I have read on TP that some people can be so dependent that they refuse to have anyone else care for them.

 

[AliceA]

Yes, there probably some truth in your thoughts. He may well feel more comfortable, men can be fearful that they may be left if the women is too dependent. Pushing a chair takes a lot of effort.
I have been far from well today, my husband was reluctant to go to the Club. However a male helper gave him time and played a word game and I really think the social but caring interaction was good. As he was out I slept.
When he came home he was tired so we both slept!

 

[Grahamstown]

Yes, there probably some truth in your thoughts. He may well feel more comfortable, men can be fearful that they may be left if the women is too dependent. Pushing a chair takes a lot of effort.
I have been far from well today, my husband was reluctant to go to the Club. However a male helper gave him time and played a word game and I really think the social but caring interaction was good. As he was out I slept.
When he came home he was tired so we both slept!

I am so sorry to hear about your feeling unwell. This is just one more thing to bear when your husband has no insight into how you are if my husband is anything to go by, impervious to my state of health. Do try to take care of yourself as far as possible. I know it’s difficult. I have had a more normal day really, not so much lying on his bed and actually enjoying an outing with a bit of a walk. Another day tomorrow xx

 

[Sad Staffs]

Why does he get so aggressive with me?
And not with anyone else.
Why does he scream and shout at me?
For no reason that I understand.
Why won’t or can’t he hold a conversation with me.
When he will talk to his brother on the phone for half an hour, and it sounds so normal.
Why can’t or won’t he do that with me?
Why won’t he even answer me when we are in the car and I try to pass the time of day with him.
He just constantly ignores what I say.
So I give up.
The only time he talks to me is when it is about him.
He has no interest in me or my life at all.
I think he still loves me.
But it’s such a one sided life.
It drags me down....
such a lonely existence.

 

[Guzelle]

I could have written a lot of this. I hate him a lot of the time!
He criticises everybody we see.
He treats me like a slave and punchbag when in a bad mood.
Then he will say what is wrong with you when I’m upset.
If he can’t do anything he shouts at me for not teaching him properly!
When I’m talking to people he tries to drag me away and tells me to tell them to f.... off!
Our daughter has just had a baby boy yesterday but he doesn’t want her here and he doesn’t want me to go there either!
He hates his cousin who is the only relative that comes to see him!
I really wonder who he is because there’s nothing left of his personality.
I take him on shorter walks now and go in the car to meet with the walking group as he falls over if he walks too far now, but he shouts at me calling me lazy. I just have to agree or it takes 2 men to help him walk back from the walk. But he can’t remember any of this!

 

[Sad Staffs]

I could have written a lot of this. I hate him a lot of the time!
He criticises everybody we see.
He treats me like a slave and punchbag when in a bad mood.
Then he will say what is wrong with you when I’m upset.
If he can’t do anything he shouts at me for not teaching him properly!
When I’m talking to people he tries to drag me away and tells me to tell them to f.... off!
Our daughter has just had a baby boy yesterday but he doesn’t want her here and he doesn’t want me to go there either!
He hates his cousin who is the only relative that comes to see him!
I really wonder who he is because there’s nothing left of his personality.
I take him on shorter walks now and go in the car to meet with the walking group as he falls over if he walks too far now, but he shouts at me calling me lazy. I just have to agree or it takes 2 men to help him walk back from the walk. But he can’t remember any of this!

Oh dear @Guzelle .... I think the boat we are in is going to sink. I think so many of us are in the same boat!
Everything you have written happens here, and it’s so hard isn’t it. Will we ever be the person we deserve to be?
My worry is that I’ve changed as a person. I’m not the happy, sensitive, caring person I used to be. I’m just a drudge.
I still love him, but his cruelty and selfishness is chipping away at me.
I still, occasionally, albeit rarely, see a glimpse of the man he was. But it is so fleeting. I’m like a beggar with those moments.
It’s good to talk to you....
Take care, love B x

 

[Guzelle]

I also feel like a drudge. I dread getting up in the morning. I felt happy this morning as our daughter had her longed for baby yesterday. But he soon made me feel miserable again. We went to M&S I was looking at baby clothes but he was getting nasty and didn’t want me to look or even buy anything.

I never feel happy or joyful as I used to. Even when I have something to be joyful about he soon puts a stop to it.

I envy women who are widows and think they don’t know how lucky they are not having to deal with dementia.

He hardly reads the paper now and when he does he get all the news wrong. He watch’s the tv less as he can’t follow any story and can’t keep up with the speed of the conversation.

 

[Sad Staffs]

I also feel like a drudge. I dread getting up in the morning. I felt happy this morning as our daughter had her longed for baby yesterday. But he soon made me feel miserable again. We went to M&S I was looking at baby clothes but he was getting nasty and didn’t want me to look or even buy anything.

I never feel happy or joyful as I used to. Even when I have something to be joyful about he soon puts a stop to it.

I envy women who are widows and think they don’t know how lucky they are not having to deal with dementia.

He hardly reads the paper now and when he does he get all the news wrong. He watch’s the tv less as he can’t follow any story and can’t keep up with the speed of the conversation.

First of all, congratulations on your new grand child. I hope they live close enough for you to get lots of love and comfort.
Then I want to write....
Me too....
Me too....
Me too.....
It’s at times like reading your post that I realise that my situation isn’t unique, it just feels that way. I feel so isolated. No one understands except on here. Everyone thinks I’m exaggerating because my husband is so different with them.
It’s so tough and I know how you feel.
Take care, buy those baby clothes, online if you have to, but do it. It will make you happy doing something so normal. Because our lives aren’t normal are they.
Hope to speak again soon, love B xx

 

[jugglingmum]

@Guzelle - congratulations on your grandchild. If you can't buy some in M & S can you buy some babyclothes on line. I do my M & S shopping on line and have it delivered to store - 2 fold - I don't have to be in, and if below free delivery no delivery charges. If you collect it in store it comes in a black bag so OH wouldn't see what was in it and you could say some new sheets or similar.

 

[Guzelle]

Thanks yes I can do that. But I just wanted to look at baby clothes.

 

[jugglingmum]

Thanks yes I can do that. But I just wanted to look at baby clothes.

I understand - even though I've never liked babies I did enjoy looking at baby clothes and still find them cute (I do love my children but don't like babies, even my own)

 

[kindred]

Why does he get so aggressive with me?
And not with anyone else.
Why does he scream and shout at me?
For no reason that I understand.
Why won’t or can’t he hold a conversation with me.
When he will talk to his brother on the phone for half an hour, and it sounds so normal.
Why can’t or won’t he do that with me?
Why won’t he even answer me when we are in the car and I try to pass the time of day with him.
He just constantly ignores what I say.
So I give up.
The only time he talks to me is when it is about him.
He has no interest in me or my life at all.
I think he still loves me.
But it’s such a one sided life.
It drags me down....
such a lonely existence.

Dearest B,
I know, I really do. You know from my post Please Don't Throw me away how much I love my OH. But when I was caring for him at home, as you are your husband, he constantly called me a miserable bitch, told me he absolutely hated me etc etc. This totally changed after his accident and his admission to first hospital and then his nursing home. Within his limits he is gentle, concerned about me and loving. These aspects may still be there with your husband. I do not really understand what is happening to effect the profound change in my OH from aggressive to loving. I know his nursing home is exceptional, but the change happened before that, after his accident and when he was in hospital My only theory is that he could sense my fed upness with it all and felt like a trapped animal. That is just how it is being a sole carer. I was a trapped animal too. I think that when circumstances change, whatever that change may be, possibly they can change too. all my love, Geraldinexxxx

Why does he get so aggressive with me?
And not with anyone else.
Why does he scream and shout at me?
For no reason that I understand.
Why won’t or can’t he hold a conversation with me.
When he will talk to his brother on the phone for half an hour, and it sounds so normal.
Why can’t or won’t he do that with me?
Why won’t he even answer me when we are in the car and I try to pass the time of day with him.
He just constantly ignores what I say.
So I give up.
The only time he talks to me is when it is about him.
He has no interest in me or my life at all.
I think he still loves me.
But it’s such a one sided life.
It drags me down....
such a lonely existence.