Who has stolen my husband?

[Sad Staffs]

Hi @Lilac Blossom
I’m sorry I’m late replying to your post. I’ve been feeling sorry for myself! I hate being like that....
My best friend was from Ayr, so I’m aware of high level celebrations at New Year. She was a wonderful person. She loved me for who I am, always there for me.... sadly she died before Christmas. I miss her. She lived in the Midlands for 60 years but never lost her strong accent. Her two boys had Brummie accents. But my friend was a real Scottish lass xx
I’m sorry your OH is on a downward spiral. It must be really hard for you. Do you have close friends and family?
I hope that you can get some peace and comfort over the celebrations.
Few of us have a life that we can look forward to.
But just to let you know that I’m here any time you need to message.
Love B xx

 

[Sad Staffs]

I’ve decided I don’t exist.
In fact I pinched myself, and yes I do exist, but only as a servant to my husband.
So I’m having a Cinderella moment.
I’m here to serve his every whim.
No thanks from him, ever.
Just an expectation that his life will run smoothly because I do everything to make it run smoothly.
And what do I get out of all this?
I have no idea....
But what I do know is that 2019 will be more of the same.
Or could it be worse.....
Moan over, love B xx

 

[Susan11]

I’ve decided I don’t exist.
In fact I pinched myself, and yes I do exist, but only as a servant to my husband.
So I’m having a Cinderella moment.
I’m here to serve his every whim.
No thanks from him, ever.
Just an expectation that his life will run smoothly because I do everything to make it run smoothly.
And what do I get out of all this?
I have no idea....
But what I do know is that 2019 will be more of the same.
Or could it be worse.....
Moan over, love B xx

I'm thinking of you and am so sorry life is so difficult for you . I want you to think every morning before you get out of bed and every evening before you go to sleep " I am an amazing person " because You are. Best wishes Susan

 

[Sad Staffs]

I'm thinking of you and am so sorry life is so difficult for you . I want you to think every morning before you get out of bed and every evening before you go to sleep " I am an amazing person " because You are. Best wishes Susan

Thank you Susan... a really lovely message. Love to you, B xx

 

[AliceinWonderland]

I’ve decided I don’t exist.
In fact I pinched myself, and yes I do exist, but only as a servant to my husband.
So I’m having a Cinderella moment.
I’m here to serve his every whim.
No thanks from him, ever.
Just an expectation that his life will run smoothly because I do everything to make it run smoothly.
And what do I get out of all this?
I have no idea....
But what I do know is that 2019 will be more of the same.
Or could it be worse.....
Moan over, love B xx

I just came here for a grumble and see I'm not alone. Losing conversation now, unless it relates to him. Like you, my day generally runs around his needs. Luckily I am still working a few days a week but health appointments eat in to my work hours. He can't go on his own, he may forget to go, he may fall over getting there, he won't remember what he is told whilst he is there .... I still exist but the situation changes rapidly and I am having trouble keeping up with it, haven't time to learn my new responses which don't lead to an argument. So thank you. One day at a time. Although some times it feels like an hour at a time. I hope you find a way to make 2019 a bit happier. I hope to.

 

[kindred]

I’ve decided I don’t exist.
In fact I pinched myself, and yes I do exist, but only as a servant to my husband.
So I’m having a Cinderella moment.
I’m here to serve his every whim.
No thanks from him, ever.
Just an expectation that his life will run smoothly because I do everything to make it run smoothly.
And what do I get out of all this?
I have no idea....
But what I do know is that 2019 will be more of the same.
Or could it be worse.....
Moan over, love B xx

All sympathy darling. I wrote in my journal (long tossed away): I am a slave to a madman. I hope I have come through this with my own sanity intactish as I know you will. But not quite the bold lady I was before. Lost my boldness. So many of us are enduring this. It is a kind of dystopia, I feel. With you all the way sweetheart, all the way. You are indeed an amazing person and you help others so lovingly and willingly.
all my love and thoughts, Geraldinexxxx

 

[Sad Staffs]

I just came here for a grumble and see I'm not alone. Losing conversation now, unless it relates to him. Like you, my day generally runs around his needs. Luckily I am still working a few days a week but health appointments eat in to my work hours. He can't go on his own, he may forget to go, he may fall over getting there, he won't remember what he is told whilst he is there .... I still exist but the situation changes rapidly and I am having trouble keeping up with it, haven't time to learn my new responses which don't lead to an argument. So thank you. One day at a time. Although some times it feels like an hour at a time. I hope you find a way to make 2019 a bit happier. I hope to.

Thank you @AliceinWonderland for your post.
Being able to come on to TP and say what I think is such a valuable outlet for me. I find it hard to tell people face to face how I really feel, so I end up making light of how things are, or I just tell them I’m fine, thanks!
It must be really hard for you as you are working, and not only are you having to use valuable leave or work time for hospital and care appointments, but you must worry when you are not watching over him.
My husband is going through a very angry phase. He was quiet up to Christmas, but it was like a light switch, it changed and his screaming, swearing and general aggression have got worse. I don’t ever seem to be able to do anything right. Whatever I do he finds a reason to be angry, and shout. Why he swears when he is like that who knows. Swearing is something he has never done!
Like you, no matter what I say or do, it’s wrong, doesn’t suit him, makes him cross. I think this is called no win!
Please keep in touch and let me know how you are.
Take care, love B xx

 

[Sad Staffs]

All sympathy darling. I wrote in my journal (long tossed away): I am a slave to a madman. I hope I have come through this with my own sanity intactish as I know you will. But not quite the bold lady I was before. Lost my boldness. So many of us are enduring this. It is a kind of dystopia, I feel. With you all the way sweetheart, all the way. You are indeed an amazing person and you help others so lovingly and willingly.
all my love and thoughts, Geraldinexxxx

Ah, Geraldine, thank you xx
I just had a long chat on the phone to a cousin I’m very close to. She told me she doesn’t worry about me because she knows I will be alright. I think this was a complement. But I am strong, I will do what has to be done, but it’s the lack of existence that I find hard. It’s like he doesn’t see me or care about me.
Have I been wiped from his brain?
So difficult as we have been obsessed with each other for nearly 50 years.
I absolutely believe, Geraldine, that your sanity is intact.
Boldness.... perhaps sometimes you are bold and sometimes it’s easier to melt into the background.
But what I do know is that you have the ability to make me feel better about myself. What you have is empathy.
Thank you, with much love, Barbara xx

 

[Lilac Blossom]

Oh please do not apologise as I understand so well that build up of feelings that weigh so heavily upon us. Sorry for the loss of your best friend - it is so hard to lose that special person. I had a very dear friend who also looked after her husband at home for many years. Almost two years ago she became ill and died unexpectedly - her husband died two months after her. They moved to north Scotland from south England a good number of years ago and like your friend, she never lost her accent. I miss her so much.

So much in common with your "I don't exist" post but we do, we really do exist but I feel the need not only to exist but to feel alive, just a wee bit. I hope that we can find a way to receive something to keep us going in this life of giving........... Sometimes there is a crumb of comfort to be had from knowing that we are not alone and here on TP we appreciate that.

(((Hugs))) Lilac

 

[kindred]

Ah, Geraldine, thank you xx
I just had a long chat on the phone to a cousin I’m very close to. She told me she doesn’t worry about me because she knows I will be alright. I think this was a complement. But I am strong, I will do what has to be done, but it’s the lack of existence that I find hard. It’s like he doesn’t see me or care about me.
Have I been wiped from his brain?
So difficult as we have been obsessed with each other for nearly 50 years.
I absolutely believe, Geraldine, that your sanity is intact.
Boldness.... perhaps sometimes you are bold and sometimes it’s easier to melt into the background.
But what I do know is that you have the ability to make me feel better about myself. What you have is empathy.
Thank you, with much love, Barbara xx

Thank YOU my darling one. I understand about the lack of existence. I completely understand. How do we address this lack of existence? There have to be ways. Understanding the threat to my existence, I wrote a short novel while caring for Keith on my own all those years. It was the only place I could put my mind and heal it a bit ... I also practise engaged reading, whereby use pencil to underline important bits of what I am reading, so I can keep my engagement up in middle of horrible distractions. Even one paragraph was better than nothing. I felt I did not matter and I think this is how you feel now. My release from imprisonment came, as you know, suddenly and a shocking and unexpected way. Do not know the meaning of what I am saying quite. Except stay with us, I will always, always be here with you.
with love and best, Geraldinexxxx

 

[AliceA]

Dearest B, I am so sorry you are having such a bad time. You are grieving to for your friend. I had a friend like that, she died a few years ago. I know how you must miss her.
You are bound to feel low. This is a difficult time for so many. Of course you exist but when we are so stressed boundaries get blurred. The swearing may well be the type of dementia. I know that is no consolation.
Kindred said she started to write, I try to read albeit in small snatches, this keeps me connected. It gives me wings to fly with my own thoughts. I plan what I will write not that I get down to it!
I snatch my time, when my husband sleeps or watches sport. As you know I cannot leave him on his own, offers do not materialise. I have bought a course to follow, yet to start it but just starting to download it.
It is hard but you will come through. Lots of blessings, Alice xxx

 

[Sad Staffs]

Dearest B, I am so sorry you are having such a bad time. You are grieving to for your friend. I had a friend like that, she died a few years ago. I know how you must miss her.
You are bound to feel low. This is a difficult time for so many. Of course you exist but when we are so stressed boundaries get blurred. The swearing may well be the type of dementia. I know that is no consolation.
Kindred said she started to write, I try to read albeit in small snatches, this keeps me connected. It gives me wings to fly with my own thoughts. I plan what I will write not that I get down to it!
I snatch my time, when my husband sleeps or watches sport. As you know I cannot leave him on his own, offers do not materialise. I have bought a course to follow, yet to start it but just starting to download it.
It is hard but you will come through. Lots of blessings, Alice xxx

Oh, thank you so much Alice, you are always there, it’s so important.
I’m sitting looking at him now, he’s dozing, and he’s obviously quiet, and my chest goes tight, the tears want to flow, because I still love this man. I just don’t know anymore whether he can still love me. Does the love they once felt die along with other parts of their brain.
I think if I live forever I will never understand this disease they have.
I don’t know what he thinks or feels anymore. The only comments are complaints. To me anyway. To his brother who was here a short time ago, he was more or less fine. He got a bit argumentative, but then he always has been!
So at the moment it’s just keep going.
Thank you Alice for your support, and for always being there...
Love Barbara xx

 

[canary]

Im having a bad day today too. I went down with a filthy cold on Boxing day and have spent the time coughing, sneezing and using tissues to rival my mum! Is OH concerned for me? Not on your Nellie! He is upset because I have not been attending to him and today he has had several seizures, He was quite safe, so Im afraid that I just let him get on with it. He has jus come emerged from sleeping them off and wanted dinner. Im afraid that all I can offer is scrambled egg on toast and some leftover cheesecake. He told me it wasnt his fault he had had some seizures and I lost it and told him it wasnt my fault that i was unwell either. Hey ho, tomorrow is another day

Does the love they once felt die along with other parts of their brain.

OH got the occasional lucid moment earlier on and during one of these lucid moments told me that he felt that the love was still there, but he was no longer able to access it. I have heard of PWDs becoming more loving again as their dementia progresses and Im keeping my fingers crossed.

 

[AliceA]

Oh dear, you both need some loving tender care. My dementia island is looking good, I could put you both into respite cocoon for a good night's sleep or more. We could share the ups and downs.
So just a virtual hug each.
I think we have to redefine love, what it was and what it is now. It certainly is different, it can seem one way.
I think we have to find ways of loving and caring for our self, seeing that we have to love for two.
I am not one to look back but I have got a portrait copied from a photo taken when we first met. The original started to fall apart! I look at this to remind myself of just who I am doing this for, the young man who swept me off my feet. My companion in ups and downs and heart wrenching moments. I look at the man who needs me now. My heart melts, but sometimes I am just overwhelmed by wearyness.
I think that lucid moment is amazing, it shows the hidden truth that buried under this condition is the same soul, the person we met. The occasional glimpse is like a diamond. Treasure it.
We cannot give unless we fill ourselves. Write a gratitude diary of all these glimpses.
So back to a bit of tender care, don't beat yourselves up, the world will try that!

Sleep well, tomorrow's another day.

 

[Sad Staffs]

Im having a bad day today too. I went down with a filthy cold on Boxing day and have spent the time coughing, sneezing and using tissues to rival my mum! Is OH concerned for me? Not on your Nellie! He is upset because I have not been attending to him and today he has had several seizures, He was quite safe, so Im afraid that I just let him get on with it. He has jus come emerged from sleeping them off and wanted dinner. Im afraid that all I can offer is scrambled egg on toast and some leftover cheesecake. He told me it wasnt his fault he had had some seizures and I lost it and told him it wasnt my fault that i was unwell either. Hey ho, tomorrow is another day


OH got the occasional lucid moment earlier on and during one of these lucid moments told me that he felt that the love was still there, but he was no longer able to access it. I have heard of PWDs becoming more loving again as their dementia progresses and Im keeping my fingers crossed.

I have been so used to your wonderful words of wisdom and logic, that your post came as a surprise to me. Although it did save me from the abysmal film on BBC!
I’m really sorry you have been under the weather. We don’t bounce back from these things like we used to. I guess it doesn’t take a lot for me to feel low these days.
I do know how you feel. There just isn’t any compassion, thought or kindness anymore.
I’m still on one crutch. I can’t walk without it. But my husband has no thought or consideration. He never asks if I’m ok, never concerns himself about me carrying his meal in to him while he is sitting waiting. I cut his hair, beard etc today, he was just difficult, he made me do all the moving to access him, no concessions, no consideration. Then he got angry as he said I had cut it too short. I said it will grow! I was thinking much worse!
I’m getting used to everything being my fault, regardless. He will blatantly do something, and blame me! I find that hard not to react to. He somehow makes me feel worthless.
I’m getting hardened. I’ve cried so much since he was diagnosed. I’m not sure whether becoming insensitised is a good or bad thing, but it’s self preservation.
Time will tell where our lives are going. I dread the foreseeable future, I’m not sure there is a long term future.
Please take care. I welcome your posts, they are so helpful and supportive. So thank you .... love B xx

 

[canary]

Ha! We are none of us saints @Sad Staffs and its harder to be patient when we are not feeling well. You are not alone.
Self-preservation is good. Ive had to step back emotionally during the times when his behaviour has really upset me.
xxx

 

[jenniferjean]

Being able to come on to TP and say what I think is such a valuable outlet for me. I find it hard to tell people face to face how I really feel, so I end up making light of how things are, or I just tell them I’m fine, thanks!

Maybe I should do that more often. I do find that if I do try to explain how things are and that "no I'm not fine" the look on their faces says it all. The look says I don't want to hear this. And some of it is because, as someone said on another post, the PWD can act differently when in company. I just feel they may think I'm exaggerating. So I just tell them I'm fine.

 

[Sad Staffs]

Maybe I should do that more often. I do find that if I do try to explain how things are and that "no I'm not fine" the look on their faces says it all. The look says I don't want to hear this. And some of it is because, as someone said on another post, the PWD can act differently when in company. I just feel they may think I'm exaggerating. So I just tell them I'm fine.

Hi @jenniferjean
I have never used a forum before, never trusted technology! I’m a bit of a square wheel....
But I have found that being honest on here is liberating. Nowhere else am I able to do this. I can’t be honest with family or friends. As you say, I see a look, or perhaps I imagine the look, and I just can’t tell them how it really is. Sadly I can’t even be honest with my GP, the mental health staff, even the lovely Alzheimer’s lady.
Often my husband is there. How can I be honest when I’ve spent my life considering his feelings. He used to consider mine, but not any more, but then he is the one with dementia.
So please do use this forum, there are so many people who understand, and you can be honest and true to yourself.
I have found it such a release and a relief, and yes, comforting, that people care about me.... I’m not sure how I would cope with our life without this outlet.
Please let me know how you are, take care, love B xx

 

[Sad Staffs]

Ha! We are none of us saints @Sad Staffs and its harder to be patient when we are not feeling well. You are not alone.
Self-preservation is good. Ive had to step back emotionally during the times when his behaviour has really upset me.
xxx

Stepping back.... I wish I had the inner strength to do this.
I feel the injustice of the things he says and does. I know I shouldn’t, but I just lose it, especially if he is an inch away from me screaming and swearing.
I wish I was a better person and didn’t feel the need to retaliate.
Perhaps as time goes on I will get bored with trying to get through to him. I don’t know.... will I ever learn? Will I ever understand?
Let’s see what 2019 brings. At the moment it fills me with dread.
Gosh, I’m a bundle of fun this morning. Might have something to do with him being soaking wet earlier.... and all that washing!
Love B xx

 

[canary]

Im not saying its easy sad staffs - I guess you havent read my thread carer breakdown?
I try and pretend Im his carer, not his wife. Fortunately the rage seems to have mostly subsided now, but Im left with apathy and very little communication. This cold has gone to my chest and Im feeling rather sorry for myself. OH got up and told me he hadnt eaten anything for 2 days (which is not true) and was convinced he had a doctors appointment today (also not true). Hes had breakfast and coffee and Ive managed to convince him that he has no appointments today so he is sitting on the sofa with his android tablet. I think he is over the seizures now. I used to think that he was somehow doing it on purpose to force me to attend to him as it always happened when I was ill. Then I realised it was because he was frightened that I wouldnt be able to look after him and he knew deep down that he needed me - even if he never admitted it

No, you wont get through to him, reason and logic no longer works and will just annoy him further. I now only tell my OH what he need to hear at the time. Trying to explain things to him, or trying to have a "normal" conversation just resulted in him accusing me of trying coerce him and telling him what to think., so I dont do it now.