Another rant

[TrulyScrumptious]

I do find just offloading therapeutic especially when it concerns content I don’t feel I can share with anyone I know easily, so thank you for taking the time.
My OH was diagnosed with Alzheimer’s a year ago and he has deteriorated in lots of little ways. I retired just before this and so we are together 24 hours a day. I know with the absence of work and the issue that our children are both living away I have had probably too much time to reflect on our marriage and I am feeling very resentful now.
my husband had a 7 year affair 25 years ago and I still feel aggrieved.At the time I had him back as I had a 4 year old and my mum had recently died. We did go on to have a son and these two children have been the delight in my life. My OH has continued to hurt me in various ways that he doesn’t recognise and he has been totally impotent since 2008 so I am now a wife with unhappy memories,unfulfilled sexually and emotionally and financially as I have always worked.and yet now expected to look after him. He constantly looks at porn, apologises when I find out but doesn’t stop. I don’t love him now I know and the future looks bleak as I don’t want to look after him.
Luckily I am resilient but why is it us that make all the compromises and have to adjust when he just carries on relying on me.
I could and do scream at the unfairness I feel
it does help to put my feelings down in black and white!

 

[Grannie G]

I`m glad it helps to offload here @TrulyScrumptious

If you can ease up on the compromises and try to get some life for yourself it might help.

Do you have friends or family you could have the odd outing with, maybe for lunch or to see a film or a show?

It doesn`t sound as if your husband is yet at risk of harm if he was left for a few hours.

It`s hard enough to care for someone you love and caring for someone when the love has died must be soul destroying.

Try to get some life back for yourself.

 

[sunshine chrissy]

I do find just offloading therapeutic especially when it concerns content I don’t feel I can share with anyone I know easily, so thank you for taking the time.
My OH was diagnosed with Alzheimer’s a year ago and he has deteriorated in lots of little ways. I retired just before this and so we are together 24 hours a day. I know with the absence of work and the issue that our children are both living away I have had probably too much time to reflect on our marriage and I am feeling very resentful now.
my husband had a 7 year affair 25 years ago and I still feel aggrieved.At the time I had him back as I had a 4 year old and my mum had recently died. We did go on to have a son and these two children have been the delight in my life. My OH has continued to hurt me in various ways that he doesn’t recognise and he has been totally impotent since 2008 so I am now a wife with unhappy memories,unfulfilled sexually and emotionally and financially as I have always worked.and yet now expected to look after him. He constantly looks at porn, apologises when I find out but doesn’t stop. I don’t love him now I know and the future looks bleak as I don’t want to look after him.
Luckily I am resilient but why is it us that make all the compromises and have to adjust when he just carries on relying on me.
I could and do scream at the unfairness I feel
it does help to put my feelings down in black and white!

I totally get this,my past is different in that my husband had a gambling problem I knew nothing about,we split up 4 times,took him back time and again,we've been together 27 years,we finally got married in 2019 and now this,I feel I don't love him anymore,he put me through so much over the early years,I'm feeling old tired and exhausted by it all,I wish I'd have listened to my family all those years ago! Now I just feel sadness and pity for what he's become,I'm a 24 hour carer for someone I used to love.🥲

 

[TrulyScrumptious]

I totally get this,my past is different in that my husband had a gambling problem I knew nothing about,we split up 4 times,took him back time and again,we've been together 27 years,we finally got married in 2019 and now this,I feel I don't love him anymore,he put me through so much over the early years,I'm feeling old tired and exhausted by it all,I wish I'd have listened to my family all those years ago! Now I just feel sadness and pity for what he's become,I'm a 24 hour carer for someone I used to love.🥲

 

[TrulyScrumptious]

Exactly!, the independent life I hoped would be mine is now a distant memory and without physical warmth or affection we are like plants that shrivel and die.
Unfortunately I have not mellowed and still get very angry for myself because of his selfish ways
he no longer drives so that’s another role I have taken on and he just expects me to do everything
My friends think he uses his diagnosis as an excuse to get out of any meaningful life with me and it’s all about him.
I do get out and about but then don’t look forward to coming home.

 

[canary]

My friends think he uses his diagnosis as an excuse to get out of any meaningful life with me and it’s all about him.

Well, it does become all about him, but not for the reason your friends think.

People with dementia lose empathy and the ability to see things from somebody elses viewpoint. They lose abilities too, so he is not making excuses or trying to manipulate you into doing things for him, he really cant do them. So his world narrows and narrows until all he can see are his own needs, wants and comforts - which somebody else has to provide because he cant do them himself (even though he might insist that he can!). He constantly wants things and he is unable to see what it is like for you and the toll that looking after him is taking on you. It looks like selfishness and manipulation, but it is not - its dementia.

 

[TrulyScrumptious]

Well, it does become all about him, but not for the reason your friends think.

People with dementia lose empathy and the ability to see things from somebody elses viewpoint. They lose abilities too, so he is not making excuses or trying to manipulate you into doing things for him, he really cant do them. So his world narrows and narrows until all he can see are his own needs, wants and comforts - which somebody else has to provide because he cant do them himself (even though he might insist that he can!). He constantly wants things and he is unable to see what it is like for you and the toll that looking after him is taking on you. It looks like selfishness and manipulation, but it is not - its dementia.

Yes I understand but I think my issue is that whilst I have got friends who gladly look after their OH because they can remember the good times and what good partners they have experienced and there is genuine love, I do not have those kind of memories so am very biased and bitter and twisted!

 

[Lilyanna]

Understandable given your experiences. While dementia destroys the personality of the person it doesn't wipe out pre dementia behaviour which has resulted in feeling as you do. I don't think you're bitter and twisted I think your feelings are justified. Sending a hug and keep sharing your feelings here it is a safe place.

 

[Grannie G]

I would feel resentful too if I didn’t have a previously good relationship to fall back on.

I didn’t have a good relationship with my mother and did my duty but nothing more. It`s different with a husband or partner because living in the same house doesn’t give you any space.

It might help to get as much outside help and support as possible. I don’t know the legalities of caring for an unloving partner but there must be some relief. I would explore every avenue possible.

Find support near you

Use our dementia directory to find local support services for people with dementia and their carers in England, Wales and Northern Ireland.

www.alzheimers.org.uk

Dementia Support Line

If you need dementia support, we’re here for you. Get personalised information, support and advice by calling us on 0333 150 3456.

www.alzheimers.org.uk

Carers: looking after yourself

Supporting a person with dementia can be positive and rewarding, but it can also be challenging. Looking after yourself is important for both you and the person you are supporting.

www.alzheimers.org.uk

No one will offer help if they don`t know it is needed I know it isn`t easy to ask for help but at least you will be doing something positive.

 

[JaxG]

I do find just offloading therapeutic especially when it concerns content I don’t feel I can share with anyone I know easily, so thank you for taking the time.
My OH was diagnosed with Alzheimer’s a year ago and he has deteriorated in lots of little ways. I retired just before this and so we are together 24 hours a day. I know with the absence of work and the issue that our children are both living away I have had probably too much time to reflect on our marriage and I am feeling very resentful now.
my husband had a 7 year affair 25 years ago and I still feel aggrieved.At the time I had him back as I had a 4 year old and my mum had recently died. We did go on to have a son and these two children have been the delight in my life. My OH has continued to hurt me in various ways that he doesn’t recognise and he has been totally impotent since 2008 so I am now a wife with unhappy memories,unfulfilled sexually and emotionally and financially as I have always worked.and yet now expected to look after him. He constantly looks at porn, apologises when I find out but doesn’t stop. I don’t love him now I know and the future looks bleak as I don’t want to look after him.
Luckily I am resilient but why is it us that make all the compromises and have to adjust when he just carries on relying on me.
I could and do scream at the unfairness I feel
it does help to put my feelings down in black and white!

You are not alone. As my husband has sunk into dementia it has given me ample time to reflect on his behaviour before dementia - many of the behaviours were there all along. He has become increasingly aggressive as his skills diminished, and I am the emotional punch bag for his frustrations. To add insult to injury his business began to fail after the financial crash and I have been left paying off the debts, moving house twice in two years as more debts came out of the woodwork. And the worst part is he will never be able to value what I have done to help us and him. The consolation, like you, is I have three wonderful adult children and three grandchildren, but yes - it's not much of a life is it?

 

[sunshine chrissy]

Exactly!, the independent life I hoped would be mine is now a distant memory and without physical warmth or affection we are like plants that shrivel and die.
Unfortunately I have not mellowed and still get very angry for myself because of his selfish ways
he no longer drives so that’s another role I have taken on and he just expects me to do everything
My friends think he uses his diagnosis as an excuse to get out of any meaningful life with me and it’s all about him.
I do get out and about but then don’t look forward to coming home.

Me too,I'm lucky really,I have good friends I meet up with for a few hours a week,I'll enjoy it while it lasts,I know this will change though😩My family are supportive but they've no idea how much I struggle every day,if only they could spend 24 hours in my shoes🥲Like you I don't look forward to coming home!

 

[sunshine chrissy]

Understandable given your experiences. While dementia destroys the personality of the person it doesn't wipe out pre dementia behaviour which has resulted in feeling as you do. I don't think you're bitter and twisted I think your feelings are justified. Sending a hug and keep sharing your feelings here it is a safe place.

👍

 

[TrulyScrumptious]

👍

I have been comforted so much by all the replies as when I pressed the send button I did think” oh get a grip you sound a right moaner”
However as I get older I realise my life is not what I should have had and it’s all too late to change
i do still get out alone but that will change as his dependence gets more and his ability to function alone disappears
When I have ventured overnights with care put in and contingency plans all he does is stay in bed or watch porn. I really identified with the issue of him losing any empathy for others as that is marked but given his history pre dementia I think he has never had much otherwise he would not have been so self centred as he has been
Thank you again for all the support from all of you. It means so much
💕💕

 

[rkem3116]

Sometimes I hate my OH. He can be cruel and verbally abusive. He often tells me he is going to ring "someone" and tell them he is a victim of abuse and he wants to go into a home where he will be properly looked after! He pees all over the bathroom floor and then walks through the urine and tracks it through the house. He refuses to bathe and thinks once a month is fine and only if I insist. He wears his clothes until they could walk themselves to the wash bin. He shouts at the telly and rants at me for hours at a time about the state of the world, several subjects all at the same time, which he jumps from one to the other and tells me I am stupid or thick when I don't follow what he is talking about. And I think to myself, is this it, is this my life until he dies? Very isolated and lonely. We usually go to bed about 5.30 each day as he is too tired to stay up. We only watch simple things on telly and only those programmes he likes. He cannot follow anything complicated like a drama or anything so he watches Aussie Gold Hunters or every episode Rick Stein has ever made over and over. But then, my lovely husband comes back. A glint in his eye and a smile, with the odd joke thrown in and I hold onto him for as long as a I can, because in a blink of eye, he will be gone and the nasty version comes back. I do love him but sometimes I hate him.

 

[Grannie G]

Welcome @rkem3116

Are you sure the time for residential care is not here? The few good moments you have with your husband can be easily had in residential care while a team of staff care for his more challenging needs.

I made this decision and it made our lives so much better.

 

[canary]

I was wondering the same as Sylvia, @rkem3116 , especially as he is saying that he wants to move there.

Incontinence and inappropriate urination is a line in the sand for many carers.

You may find that once it is not you who is trying to keep him clean and meet all his needs, you may find that the "old" person comes back more often. My mum was vile to me and accused me of stealing from her and abusing her, but after she moved into her care home and was settled, her old personality (though not her memory) came back and she became so much nicer to visit.

 

[kindred]

There may be some on here who remember me.
Three years into caring alone for my husband with advanced dementia, I was convinced there was never going to be any escape. This was my life sentence. I used to write 100 lines, I must endure, every night. I could not see any way out. Social services were ghastly to me.
Then suddenly there was a way out. He had a bad fall and I had to call emergency. He was admitted to hospital abd the hospital doctor said, this ends here. He is not coming home.
And then, miracle of miracles, the hospital social worker said, I will help you.
I had never heard those words before.
And she did. She found a really nice local nursing home and he went into it and for two years before he died, we had a good relationship and were loved and cared for by the home.
They gave me great support when he died. I now volunteer at that nursing home. I have literally never known such kindness
The evening before his fall, I had been planning to end my life.

 

[JaxG]

There may be some on here who remember me.
Three years into caring alone for my husband with advanced dementia, I was convinced there was never going to be any escape. This was my life sentence. I used to write 100 lines, I must endure, every night. I could not see any way out. Social services were ghastly to me.
Then suddenly there was a way out. He had a bad fall and I had to call emergency. He was admitted to hospital abd the hospital doctor said, this ends here. He is not coming home.
And then, miracle of miracles, the hospital social worker said, I will help you.
I had never heard those words before.
And she did. She found a really nice local nursing home and he went into it and for two years before he died, we had a good relationship and were loved and cared for by the home.
They gave me great support when he died. I now volunteer at that nursing home. I have literally never known such kindness
The evening before his fall, I had been planning to end my life.

@kindred I am so shocked and so sorry for what you have endured, that you were driven to the point of suicide. I am so disgusted that we live in one of the richest countries in the world and yet Carers are left to reach this point. And I am so glad you are still here.
But this is all too familiar. I have reached a point where I am not coping with the aggression, but also the burden of looking after someone who relies on me for everything but has no empathy or care. I contacted SS two months ago, they understand but the Older Adult Mental health team is there to support my OH, he is reluctant to go into Respite and it will depend how he is on the day as to whether he will. I have been told if he asks to leave I will have to have him home, even though he has been physically aggressive but mostly verbally abusive. I just don't know how much longer I can cope. He is not incontinent, but seldom washes, will not change his clothes and has no abilities beyond eating all day long.

 

[JaxG]

Sometimes I hate my OH. He can be cruel and verbally abusive. He often tells me he is going to ring "someone" and tell them he is a victim of abuse and he wants to go into a home where he will be properly looked after! He pees all over the bathroom floor and then walks through the urine and tracks it through the house. He refuses to bathe and thinks once a month is fine and only if I insist. He wears his clothes until they could walk themselves to the wash bin. He shouts at the telly and rants at me for hours at a time about the state of the world, several subjects all at the same time, which he jumps from one to the other and tells me I am stupid or thick when I don't follow what he is talking about. And I think to myself, is this it, is this my life until he dies? Very isolated and lonely. We usually go to bed about 5.30 each day as he is too tired to stay up. We only watch simple things on telly and only those programmes he likes. He cannot follow anything complicated like a drama or anything so he watches Aussie Gold Hunters or every episode Rick Stein has ever made over and over. But then, my lovely husband comes back. A glint in his eye and a smile, with the odd joke thrown in and I hold onto him for as long as a I can, because in a blink of eye, he will be gone and the nasty version comes back. I do love him but sometimes I hate him.

I do agree with the others, surely you can't go on like this? It's no sort of life for you, and your husband might be calmer and more co operative when you are not around. It sounds horrendous and surely your health is going to suffer?

 

[sunshine chrissy]

Exactly!, the independent life I hoped would be mine is now a distant memory and without physical warmth or affection we are like plants that shrivel and die.
Unfortunately I have not mellowed and still get very angry for myself because of his selfish ways
he no longer drives so that’s another role I have taken on and he just expects me to do everything
My friends think he uses his diagnosis as an excuse to get out of any meaningful life with me and it’s all about him.
I do get out and about but then don’t look forward to coming home.