Who has stolen my husband?

[Sad Staffs]

All of what has been said resonates with me, but like @canary i don’t care if I have to do everything because I always have, what I do miss so terribly is tenderness, him caring how tired I am, being able to Just Be in each other’s company. There’s no empathy anymore, oh I coul go on but what’s the point it’s a vile, nasty, greedy selfish disease that has eaten up the love of my life. But he’s in there somewhere if only I could find him.
A x

Hi @Starbright
How true... I miss him touching me as I pass him, the affection, the smiles. As you say, the empathy.
Where do those smiles go?
He says, I’ll do it, but doesn’t.
It’s like there is no thought, certainly no logic.
Will we ever find them again... that is the hardest part.
But we are still here. It’s such a lonely life.
Love to you A xx

 

[Sad Staffs]

Oh Sad Staffs everything you say describes my life, I just don't have anything to look forward to any more, it's been 3 years since I had a holiday, I can't go anywhere without OH, if I go in the kitchen he follows me, if I go into the garden he follows me, if I go to the toilet after a few minutes he comes looking for me. I also struggle to sleep on the other hand OH is asleep minutes after getting into bed and him snoring doesn't help. Well enough moaning before I go something to make you smile, yesterday I asked OH to put the bin out and I have to watch him to make sure he puts the right one out also to make sure he doesn't wander off, as he was pushing the bin down the drive I thought he looked strange and then I realised he had his trousers on back to front and when I mentioned it to him he had no idea what I was talking about. Just as well I noticed before we went into town(again). Take care Lxx

Thank you L.... it still comes as a surprise to me that other people feel exactly the same. It’s like we are hiding in plain sight. Almost a separate nation/clan or whatever. We are here but not here... and I often think that we could die and not be found for weeks! And would anybody care. Sorry, I’m a bit of a misery today. Bad night!
Our last holiday was 3 years ago too. I can’t see us ever going on holiday again. Our issue is his incontinence. Keeping him dry is a nightmare. Changing pads every couple of hours, but he can’t put them on or take them off himself. He feels the need to pee every half hour or so, but doesn’t pass anything because of all his problems. And the incontinence service provide 3 pads a day, we probably use at least 5 or 6, and one night pad. Hopeless. We spend a fortune buying pads, and as for storing them.....
you made me smile about the bin and trousers. My husband struggles to work out back to front, upside down, inside out. But sometimes, especially when he hasn’t got an infection, he is still there, not the same, but some of the old him is still there, and I should be so grateful. Trouble is I have no idea what the next hour will bring let alone tomorrow. And I’m frightened of tomorrow! He just looks so frail...
Keep in touch, and take care of yourself L,
love B xx

 

[cumbria35]

We all find this site helpful as our position is one of the loneliest places to be, friends think he looks fine but don’t know what the earl situation is like. We all have bouts of tears and feeling guilty for our shortness at times but we are only human. I too miss the cuddles but I find that most nights his hand looks for mine in bed so that to me means he stills has feelings for me. I am lucky that he appreciates what I do for him and that means a lot. We still manage to get out most days but not doing as much as we did this time last year. I M thankful that this horrible illness did not appear until he was 8 years old and after almost sixty years of marriage. I am thankful for what we still have despite the down times. Thank you all for this page.

Should have said 80 years - iPad trick

 

[Sad Staffs]

Should have said 80 years - iPad trick

Hi @cumbria35
I did read your posts, thank you, and had worked out that you meant 80 and not 8! At least I’d hoped you meant 80!
It is lovely that your husband wants to hold your hand at night.
And 60 years of marriage, something for you both to be proud of.
We had such plans for our ruby wedding this summer. We had been planning a cruise... but it all fell apart. What is the point of celebrating now.
Sometimes I wonder what is wrong with my husband. Sometimes he seems like he used to be 2 or 3 years ago. Then he is so not my husband anymore. He is there, but now a shadow of what he was. Just so frail physically and mentally.
Thinking of you... love B x

 

[Starbright]

Hi @Starbright
How true... I miss him touching me as I pass him, the affection, the smiles. As you say, the empathy.
Where do those smiles go?
He says, I’ll do it, but doesn’t.
It’s like there is no thought, certainly no logic.
Will we ever find them again... that is the hardest part.
But we are still here. It’s such a lonely life.
Love to you A xx

Have sent you a private message B not sure if it actually went though

 

[Dutchman]

Hello Dutchman
Thank you for your post. I can relate to all you say. It’s the blank, mostly empty look on his face that I find so hard. My husband was in advertising. He hated his job because of the pressure, never a people person, but now....
You are right that memories aren’t enough, but my memories are mostly happy, my life now isn’t. I can’t imagine ever laughing like I used to. Someone once called me ebullient. I had to look it up! I thought he was being unkind! But I’m not ebullient anymore.
You are entitled to feel sorry for yourself. I do. Like you I get angry that life has dealt me this hand.
We worked hard, made provisions for our retirement so that we could live the same sort of life that we had when working. Now I’m spending it on incontinence pads by the ton, getting changes made to hard floors, paying for him to be looked after when I go into hospital, etc etc.
Life will never be the same, but we can’t change it, but I don’t want to get on with it either....
I will look for the book, thank you, keep in touch.
Take care, thinking of you, love B xx

Hi there. Woppy, doppy, do....my wife allowed me to help her wash her hair and , by default, under the shower , her body which makes me feel better as I’ve got a clean wife and no more sidestepped the issue for a while. I’ve got a new health issue and when this happens you realise how alone you are and without full support (where this was assumed) life can get very complicated . She can’t drive so trips visiting clinics could get awkward. You have to arrange your partners life as well as your own.

 

[dancer12]

Stupid thread, but I’m sitting here trying to be patient, looking at the man I’ve been with for nearly 50 years and wondering where he has gone?
When did all this really start?
Why him?
Why me?
What have we done to deserve this?
It’s breaking my heart?
I can’t believe that tomorrow could be worse than today.
That it can’t get easier than today, and today is so hard.
Life can be so cruel.
I am not sure who has him, but I want him back.
He’s mine....

I keep calling him a clone, I have to find someway to laugh or else I'd cry all day. It's a good thing he has still has a sense of humour, one of the things I love about him. We all need to find something to smile about.

 

[Violetrose]

Hi Sad Staffs, Everything you say resonates with me. I hope you can find some comfort in knowing you are not alone with this terrible situation. I could relate to everything you said. I am so lonely for the man I have loved for 50 years. He is here in body but not mind. He has deteriorated so much since being hospitalised earlier this year with Pneumonia. He is still physically well, but he is very confused and struggles to hold even a basic conversation. Most of what he says makes no sense at all. I have to watch him like a Hawk, because he does the strangest things and even the simple tasks are beyond him now. I no longer feel like his wife, that relationship has gone, I am his carer and I love him for the wonderful man he was and the happy life we had, but it is a sad and lonely place to be. I am usually a positive happy person, but some times it just gets to me and I feel completely heart broken. It helps to communicate with people who really undestand the situation. I hope you are ok and feel better for sharing your feelings. V

 

[Sad Staffs]

Hi there. Woppy, doppy, do....my wife allowed me to help her wash her hair and , by default, under the shower , her body which makes me feel better as I’ve got a clean wife and no more sidestepped the issue for a while. I’ve got a new health issue and when this happens you realise how alone you are and without full support (where this was assumed) life can get very complicated . She can’t drive so trips visiting clinics could get awkward. You have to arrange your partners life as well as your own.

Good to hear from you @Dutchman. Personal hygiene can be a struggle.
I’m sorry to hear that you have your own health issues. I do understand as I’m in the same boat. So many of us on here will empathise.
I’m the driver in our house as they revoked my husbands licence. He had always been the one to drive us anywhere. I was the useful driver when he had been to the pub!
Take care.... hope you sort your health problems and keep in touch. Bx

 

[Sad Staffs]

I keep calling him a clone, I have to find someway to laugh or else I'd cry all day. It's a good thing he has still has a sense of humour, one of the things I love about him. We all need to find something to smile about.

Hello @dancer12
It’s so tough isn’t it? I know how you feel. It’s so rare to actually laugh these days. But it’s so good for you that he still has his sense of humour. My husband hasn’t seemed happy since way before he was diagnosed. I think his dementia has been brewing for a lot longer than we ever imagined.
I hope that you can find something to smile about....
Thinking of you and sending love. Bx

 

[Sad Staffs]

Hi Sad Staffs, Everything you say resonates with me. I hope you can find some comfort in knowing you are not alone with this terrible situation. I could relate to everything you said. I am so lonely for the man I have loved for 50 years. He is here in body but not mind. He has deteriorated so much since being hospitalised earlier this year with Pneumonia. He is still physically well, but he is very confused and struggles to hold even a basic conversation. Most of what he says makes no sense at all. I have to watch him like a Hawk, because he does the strangest things and even the simple tasks are beyond him now. I no longer feel like his wife, that relationship has gone, I am his carer and I love him for the wonderful man he was and the happy life we had, but it is a sad and lonely place to be. I am usually a positive happy person, but some times it just gets to me and I feel completely heart broken. It helps to communicate with people who really undestand the situation. I hope you are ok and feel better for sharing your feelings. V

Hello @Violetrose
Thank you so much for your post.
You said my post resonated with you, but everything you have written here I can relate to. I just feel it is so wicked that this happens to people like us. What have we ever done to deserve this?
My husband was in hospital in February and March this year. He came home and he was almost unrecognisable as the man that went into hospital. Sometimes I look at him and I think has he got dementia? Then almost in the same breath he will do or say something and I do a double take. He still surprises me that he looks the same, but just isn’t.
I have always been positive, glass half full, person. But I too am disappearing. What life we have feels worthless, there is certainly no enjoyment. But, like you, I love him, care for him, and cry for him. Mostly I cry for who he was, and where has he gone? I cry for me too. That might be selfish, but I didn’t ask for any of this. But it’s the life we are stuck with, and I guess we play the hand we are given.
Take care, sending love and keep in touch. Bxx

 

[Sad Staffs]

Well, what can I say, it’s a rough day. We had a raging row and I just ended up screaming and shouting just as much as my husband. I try so hard not to lose it with him. But occasionally I can’t hold back and I have to let go.
My husband has had yet another urine or kidney infection. I can always tell as his dementia becomes more pronounced. So he had another dose of antibiotics and things calmed down. He finished them last week.
This morning his incontinence pad smelt really nasty, so I suggested he do another sample for testing. He got very difficult and very short tempered. The main signs that he is brewing another infection.
It has just got worse as the day has worn on. He has never been known as a man of patience, but when he is like this, he becomes very selfish, uncaring, inconsiderate and everything has to happen immediately.
So I snapped. We had a row, he screamed and swore, I screamed.
And now I’m sitting here feeling so guilty. Trying hard not to cry.
It is such a tough life. I know from reading other posts that it could be a lot worse.
One day I will write a post on here that is happy and cheerful.
I have written this and debated deleting it, but it is my life, his life, OUR life. It’s an existence.
I can’t see an end to being unhappy. I don’t know how unhappy my husband is, but I don’t believe he is happy.
Thank you for all your posts....
Love B xx

 

[highland girl]

Well, what can I say, it’s a rough day. We had a raging row and I just ended up screaming and shouting just as much as my husband. I try so hard not to lose it with him. But occasionally I can’t hold back and I have to let go.
My husband has had yet another urine or kidney infection. I can always tell as his dementia becomes more pronounced. So he had another dose of antibiotics and things calmed down. He finished them last week.
This morning his incontinence pad smelt really nasty, so I suggested he do another sample for testing. He got very difficult and very short tempered. The main signs that he is brewing another infection.
It has just got worse as the day has worn on. He has never been known as a man of patience, but when he is like this, he becomes very selfish, uncaring, inconsiderate and everything has to happen immediately.
So I snapped. We had a row, he screamed and swore, I screamed.
And now I’m sitting here feeling so guilty. Trying hard not to cry.
It is such a tough life. I know from reading other posts that it could be a lot worse.
One day I will write a post on here that is happy and cheerful.
I have written this and debated deleting it, but it is my life, his life, OUR life. It’s an existence.
I can’t see an end to being unhappy. I don’t know how unhappy my husband is, but I don’t believe he is happy.
Thank you for all your posts....
Love B xx

Oh sadstaffs I don’t post very often recently but follow everyone’s posts, it is so difficult, we try our best but guilt still takes over. I quite often over react and then cry myself to sleep feeling guilty. It’s usually bed time that gets me trying to get him ready for bed when he doesn’t want to and we get so tired, then when I finally get to bed can’t sleep. Like you and others I feel my life is over, but after 42 years in a happy marriage I wouldn’t be anywhere else. I just wish....... not sure what for, my oh back. It’s so sad! Take care try not to feel guilty when you row. I don’t know about others but we argued before dementia but we’re expected to smile nicely and be patient now, unfortunately I was at the back of the queue when patience was handed out. You have lots of support on here. Xxxx

 

[Manc70]

Well, what can I say, it’s a rough day. We had a raging row and I just ended up screaming and shouting just as much as my husband. I try so hard not to lose it with him. But occasionally I can’t hold back and I have to let go.
My husband has had yet another urine or kidney infection. I can always tell as his dementia becomes more pronounced. So he had another dose of antibiotics and things calmed down. He finished them last week.
This morning his incontinence pad smelt really nasty, so I suggested he do another sample for testing. He got very difficult and very short tempered. The main signs that he is brewing another infection.
It has just got worse as the day has worn on. He has never been known as a man of patience, but when he is like this, he becomes very selfish, uncaring, inconsiderate and everything has to happen immediately.
So I snapped. We had a row, he screamed and swore, I screamed.
And now I’m sitting here feeling so guilty. Trying hard not to cry.
It is such a tough life. I know from reading other posts that it could be a lot worse.
One day I will write a post on here that is happy and cheerful.
I have written this and debated deleting it, but it is my life, his life, OUR life. It’s an existence.
I can’t see an end to being unhappy. I don’t know how unhappy my husband is, but I don’t believe he is happy.
Thank you for all your posts....
Love B xx

Hi B, I’m so sorry you have had a difficult day. Please don’t feel guilty, you have nothing to feel guilty about, it is so hard not to bite back, we are only human and we’re not meant to be shouted at without reacting. I had a bad day yesterday, really weepy all day from the pit of my stomach, and feeling as though I just can’t do this while at the same time knowing there is no alternative, a real intense feeling of being trapped. We love them, miss how they were, hate them because of their behaviour while knowing it’s not their fault - you’ve mentioned a rollercoaster before and it certainly is. I snapped out of it today with a flying visit from his sister and a lunch out but have been shouted at over something and nothing at tea time - strangely I was just too tired to react and he actually apologised after a few minutes although he hasn’t spoken to me since, oh well a bit of peace. I sometimes feel guilty about my feeling of not coping when I know there are those of you out there who have it far worse than me and wonder how I will get on when things inevitably get worse.
Take care of yourself B, thinking about you, Love S xx

 

[karaokePete]

Hello @Sad Staffs, I have to say I agree with @highland girl, arguments happen. I still have moments when I snap.

The Compassionate Communication thread is great, and I read it often, but it's like training for Sainthood and certainly beyond a mere mortal like myself at times! I don't feel guilty as I know I'm doing my best and I couldn't do more so the imperfection has to be accepted.

I'm always consoled by the fact that I know my wife won't remember these occasions so it doesn't do any lasting damage to her. We carers just have to learn how to ditch these moments ourselves to avoid any long term stress related damage from that adding to the stress we already have to endure.

 

[Sad Staffs]

Oh sadstaffs I don’t post very often recently but follow everyone’s posts, it is so difficult, we try our best but guilt still takes over. I quite often over react and then cry myself to sleep feeling guilty. It’s usually bed time that gets me trying to get him ready for bed when he doesn’t want to and we get so tired, then when I finally get to bed can’t sleep. Like you and others I feel my life is over, but after 42 years in a happy marriage I wouldn’t be anywhere else. I just wish....... not sure what for, my oh back. It’s so sad! Take care try not to feel guilty when you row. I don’t know about others but we argued before dementia but we’re expected to smile nicely and be patient now, unfortunately I was at the back of the queue when patience was handed out. You have lots of support on here. Xxxx

Thank you @highland girl for your post and your words of comfort. I understand all you say. Like you I have a good cry when I get into bed.
We have been married 40 years, but lived together for 42 years, and although we have had our ups and downs, in truth we have had a wonderful life together.
Patience isn’t one of my virtues either! I feel so angry that our retirement years that we had provided for have been stolen. I guess it was really 7 years ago when he was diagnosed with bladder cancer that our life changed dramatically.
It is comforting to talk to people who really understand, so thank you. Take care of yourself, with love, Bxx

 

[Sad Staffs]

Hi B, I’m so sorry you have had a difficult day. Please don’t feel guilty, you have nothing to feel guilty about, it is so hard not to bite back, we are only human and we’re not meant to be shouted at without reacting. I had a bad day yesterday, really weepy all day from the pit of my stomach, and feeling as though I just can’t do this while at the same time knowing there is no alternative, a real intense feeling of being trapped. We love them, miss how they were, hate them because of their behaviour while knowing it’s not their fault - you’ve mentioned a rollercoaster before and it certainly is. I snapped out of it today with a flying visit from his sister and a lunch out but have been shouted at over something and nothing at tea time - strangely I was just too tired to react and he actually apologised after a few minutes although he hasn’t spoken to me since, oh well a bit of peace. I sometimes feel guilty about my feeling of not coping when I know there are those of you out there who have it far worse than me and wonder how I will get on when things inevitably get worse.
Take care of yourself B, thinking about you, Love S xx

Hello S.... thank you so much for your post. I’m sorry you had such a bad Saturday, but I’m pleased he apologised to you. I don’t think the word sorry is in my husbands vocabulary. He just has never felt the need to apologise throughout our life together, so why would he start now! I was brought up to believe I should try to shut up, back down, anything for a quiet life! So I’m sitting here wondering why I now react so much! I think I can’t answer that one, it’s hurting my head!!
I’m sitting here able to reply to your post as he has dozed off. I love him, but my goodness I’m so grateful for these quiet precious moments. We just don’t get enough of them do we!
I agree with you that we could have it so much worse, and I’m terrified of what the future holds. But I’m thankful that I have you to talk to ...
take care S.... with love, B xx

 

[Sad Staffs]

Hello @Sad Staffs, I have to say I agree with @highland girl, arguments happen. I still have moments when I snap.

The Compassionate Communication thread is great, and I read it often, but it's like training for Sainthood and certainly beyond a mere mortal like myself at times! I don't feel guilty as I know I'm doing my best and I couldn't do more so the imperfection has to be accepted.

I'm always consoled by the fact that I know my wife won't remember these occasions so it doesn't do any lasting damage to her. We carers just have to learn how to ditch these moments ourselves to avoid any long term stress related damage from that adding to the stress we already have to endure.

Thank you for your post @karaokePete, and for always being the voice of reason. I get what you say that I shouldn’t beat myself up if I run out of patience and react. Trouble is my husband does remember when we have had a turbulent time. In fact he is giving me the cold shoulder today! Trouble is I have to deal with his incontinence pads, so he has no choice but to ask me for help.
I just don’t know how severe or mild his dementia is. I know that when he is brewing or has an infection which are frequent then his symptoms are worse. When he has taken antibiotics then he is more reasonable.
Sometimes I think, is there anything wrong? Then in the same breath he will do or say something and it is like I’m living with two different people!
I guess it keeps me on my toes. I just wish it wasn’t so very painful being kept on my toes!!
Thank you and take care, B x

 

[karaokePete]

That is tough for you @Sad Staffs. I apologise for not knowing your husband's diagnosis. With my wife it's a mixed dementia with symptoms of Alzheimer's and Vascular Dementia so memory was an early casualty - and is sometimes a blessing, even though that's sad to say.

With other forms of dementia the memory can stay intact, especially in the earlier stages, although may suffer later. Again, it's sad to say (dementia is a brutal syndrome) but things may get a bit easier on that score for you, even though the lack of memory brings it's own problems and frustrations to both the person with the dementia and the carer.

It isn't easy. The forum can be a place of refuge and I myself often use it as such.

 

[kindred]

Thank you for your post @karaokePete, and for always being the voice of reason. I get what you say that I shouldn’t beat myself up if I run out of patience and react. Trouble is my husband does remember when we have had a turbulent time. In fact he is giving me the cold shoulder today! Trouble is I have to deal with his incontinence pads, so he has no choice but to ask me for help.
I just don’t know how severe or mild his dementia is. I know that when he is brewing or has an infection which are frequent then his symptoms are worse. When he has taken antibiotics then he is more reasonable.
Sometimes I think, is there anything wrong? Then in the same breath he will do or say something and it is like I’m living with two different people!
I guess it keeps me on my toes. I just wish it wasn’t so very painful being kept on my toes!!
Thank you and take care, B x

Sweetheart, have been reading your posts. You know that I have been there, I think I only escaped, only got help because of OH accident and because twice my life had been at risk and I had been injured. Our minds desperately search for meaning in this, but essentially we are living with another human who is to all intents and purposes mad. And we are required to placate them. Not to say it isn't an honourable occupation, helping someone access what is left of their life is honourable but this is pushing our resources to extremes. I survived only because when I was at the point of going under, there was the accident and a hospital social worker who said to me, I will help you ... And because I had my suicide pack all ready for the moment I could no longer cope.
Please do not feel you have lost your previous cheerful self, it would be impossible to maintain it in these circumstances. It will be there one day, I promise you, I really do. with all my love, Geraldinexxx