My husband is 3 yrs into a diagnosis of MCI following the pattern of Alzheimer’s. I’m not exactly sure how to express my thoughts and questions but I’ll try. My husbands personality is slowly changing. My feelings towards him are changing. It’s changing our marriage. I feel guilty. My husband doesn’t recognise these changes I don’t think. How does a marriage survive Alzheimer’s? How do I even know what is Alzheimer’s and what is my husband lacking empathy? Being difficult? Being selfish? I’m trying so hard to support him on this journey but I’m a human too and my marriage no longer gives me what I need - I hate saying that out loud 😔 but I don’t feel the connection I once did, I feel so confused. If I feel like this in the beginning, how am I going to feel further down the rd? I ask my husband if he’s ok, if I’m supporting him enough etc, his reply is “I feel the closest I’ve ever felt to you”. Why do I not feel the same? I love him but we’ve changed and we can’t discuss it because he doesn’t see anything’s different
Dementia and marriage
- Thread starter HatHat1313
- Start date
i think the roles change. my husband was diagnosed with vascular nearly 4 years ago. ive become the one that organizes, pays bills on time, make sure we have food and all the other things that make up running a house and being married. im not sure you can separate entirely which is dementia and whats himself. i dont think i even tried as it seemed a waste of energy. i deal with what i have to deal with now and not look back. it would just make me sad to see what i miss. i stay with the day as the future i dont know and getting worried about something that might/ might not happen is pointless. have you power of attorney? thats probably the most important. have you looked at benefits he might be entitled to, council tax? he probably unaware of his illness/ change. i dont tend to discuss things like that. i take the decisions. i dont want to but thats the way it is.
Im another one who no longer loves my OH and you will find numerous other people who feel the same on here.
Personality change, loss of empathy, lacking flexibility and becoming self-centred are all dementia traits. If your husband tended to be like that before then it becomes easier for him to go down that path.
Im like @jennifer1967 - I dont look at the past as I dont want to see what I have lost, nor do I look to the future because its impossible to know what will happen and when. I just take each day as it comes - then another day, then another.......
Try to find time for yourself, enjoy good times, acknowledge any wins, appreciate the small things, get POA and grab any help that is offered with both hands.
Personality change, loss of empathy, lacking flexibility and becoming self-centred are all dementia traits. If your husband tended to be like that before then it becomes easier for him to go down that path.
Im like @jennifer1967 - I dont look at the past as I dont want to see what I have lost, nor do I look to the future because its impossible to know what will happen and when. I just take each day as it comes - then another day, then another.......
Try to find time for yourself, enjoy good times, acknowledge any wins, appreciate the small things, get POA and grab any help that is offered with both hands.
My husband followed much the same path as yours. I began to think about how I could realistically leave as he had changed so much into a person I didn’t even like. He could see nothing wrong either and I often was confused, still am sometimes, as to whether he’s just totally lacking empathy and being unpleasant or if it’s the dementia.
I wouldn’t say I’ve come to terms with it, do any of us, but I’m learning to live with it. My OH wasn’t like this before dementia, he was a kind, thoughtful man. Like @canary I try not to look to the future. I’ve taken over all the bills and admin, I’ve got POA and after that I’ll have to try and deal with whatever comes next. It’s all we can do.
No, you’re not being selfish in saying your marriage basically isn’t a marriage any more. So many people on this forum feel exactly the same way and understand how you feel.
I wouldn’t say I’ve come to terms with it, do any of us, but I’m learning to live with it. My OH wasn’t like this before dementia, he was a kind, thoughtful man. Like @canary I try not to look to the future. I’ve taken over all the bills and admin, I’ve got POA and after that I’ll have to try and deal with whatever comes next. It’s all we can do.
No, you’re not being selfish in saying your marriage basically isn’t a marriage any more. So many people on this forum feel exactly the same way and understand how you feel.
Unfortunately Alzheimer’s and other dementias equal loss of empathy, loss of logic and total self absorption. As most patients have no or little insight into their illness, you are the person who has to have it all wrong when things don’t happen as they expect. Or they do not get their own way then you are the uncooperative one and therefore to blame.
How is it selfish to be doing all the carer stuff you without any understanding from your husband?
I feel so sad for you to be so recently married to find yourself in such a sorry situation. Caring can be a long and thankless pathway so please keep posting for support and help.
How is it selfish to be doing all the carer stuff you without any understanding from your husband?
I feel so sad for you to be so recently married to find yourself in such a sorry situation. Caring can be a long and thankless pathway so please keep posting for support and help.
Hello @HatHat1313, welcome to the forum. I agree absolutely with what others above have said about dealing with a husband with dementia. it isn't really a marriage any more as such as it seems to be all take and no give, not an equal partnership - in fact no partnership at all. Like @jennifer and others, I make all the decisions and do almost all the work - and try not to think about the future. My husband was diagnosed with Alzheimers in 2012 , undiagnosed in about 2017 but has progressively declined. He knows his brain is mushy as he puts it, we can have a discussion about his situation but it is all forgotten in minutes. I am certainly not "in love" with him now but he has been a good man and a good husband even if he is only a shadow of his former self now. But I do think - if the situation were reversed - would he care for me? And I feel sure that he would so for now I'll continue. I try not to be resentful but it isn't always easy... I admit to using four letter words in my head at times.... And I've told him many times that when I can no longer continue to care for him he will go to a care home which he accepts. And promptly forgets...
I am finding now my husband is in a nursing home I am begiining to feel affection for him again. I can't say I feel the sort of love you do for a husband as he is like an adult child but I am able to remember that we did love each other very much and that he was a good,kind man.
PWD have no empathy as their disease progresses whichever type of disease they have. I think the higher brain functions like empathy, consideration and compassion are lost.
Our problems escalated very abruptly after ? stroke damage and we had huge problems with psychosis but I realise now that I had not put in help and protections. I would urge all of you to try and get some carer help and often the most useful is a companion carer. Invent a medical problem of your own to explain it.
And yesterday in a huge step forward I said to my daughter I couldn't look after him again.
Please remember it is an enormous burden most of us carry and that we don't get the support society should provide in a rich country.
PWD have no empathy as their disease progresses whichever type of disease they have. I think the higher brain functions like empathy, consideration and compassion are lost.
Our problems escalated very abruptly after ? stroke damage and we had huge problems with psychosis but I realise now that I had not put in help and protections. I would urge all of you to try and get some carer help and often the most useful is a companion carer. Invent a medical problem of your own to explain it.
And yesterday in a huge step forward I said to my daughter I couldn't look after him again.
Please remember it is an enormous burden most of us carry and that we don't get the support society should provide in a rich country.
Hi @maisiecat you said "Please remember it is an enormous burden most of us carry and that we don't get the support society should provide in a rich country."
Have a think. Apart from easy access respite care places, what support would you like to have, and what support should society provide?
Is it just respite, or is it day centres, meetings of carers to chat (like this forum or in person) or something else. Does it have to be or should it be means tested or needs tested - whatever it should be, it's bound to cost, so who should pay?
How can we lobby for "it" unless we agree what "it" in one or many forms should be?
Hi @Chizz , I can only go from my situaution which escalated very suddenly. Firstly I think there should be a coordinator as a main point of contact for people who are in crisis. They can then signpost people onwards so often I would need help and it would be an answer machine where a call is not returned. In May I requested an urgent carers assessment saying that I was suicidal. It still has taken place. That is wholly unacceptable and means that staff are ignoring cries for help but the problem doesn't go away someone else gets landed with it.
I would like to see more day centres but more than that I would like day hospitals where our PWD could have assessments carried out and see physio's etc. My husband never saw a Consultant Psychiatrist despite having a diagnosis for 5 years. The rules on effective diagnosis and management need to be tightened up. Its inconceivable that someone with heart disease or cancer would be denied a Consultant appt.
Respite care is beneficial but if the carers weren't abandoned to become completely broken it would be less essential. All carers of PWD in later stages should have access to companion carers so they get time away each week.
Perhaps it would be expensive but why are PWD and their carers valued so poorly. Many of the services we were referred to seem to be costly and inefficient. A review of cost effectiveness may help.
Ultimately everyone is going to have to pay more through taxes if the predicted explosion of dementia happens but money is found when it suits governments to find it.
I bet your bored by now !!
I would like to see more day centres but more than that I would like day hospitals where our PWD could have assessments carried out and see physio's etc. My husband never saw a Consultant Psychiatrist despite having a diagnosis for 5 years. The rules on effective diagnosis and management need to be tightened up. Its inconceivable that someone with heart disease or cancer would be denied a Consultant appt.
Respite care is beneficial but if the carers weren't abandoned to become completely broken it would be less essential. All carers of PWD in later stages should have access to companion carers so they get time away each week.
Perhaps it would be expensive but why are PWD and their carers valued so poorly. Many of the services we were referred to seem to be costly and inefficient. A review of cost effectiveness may help.
Ultimately everyone is going to have to pay more through taxes if the predicted explosion of dementia happens but money is found when it suits governments to find it.
I bet your bored by now !!
Dementia an marriage go together like a horse and....motorbike as the song doesn't go.
I just did for her what I'd have wanted her to do for me and know she would have done if it had been the other way around and I'd been the one with AZ not her.
For us there's was no I in team, it was hard, yes, and now it's over it's actually worse not better, but I can live with myself knowing I did all I could for her.
K
I just did for her what I'd have wanted her to do for me and know she would have done if it had been the other way around and I'd been the one with AZ not her.
For us there's was no I in team, it was hard, yes, and now it's over it's actually worse not better, but I can live with myself knowing I did all I could for her.
K
I agree with all that @maisiecat has written above but there are much thornier problems which can’t easily be solved. Firstly, people with dementia have rights not to be coerced into doing or accepting things that they don’t want (reasonably enough). This can make things dreadfully difficult for their carers but the alternative is to infringe on vulnerable people’s rights to an unacceptable degree. Capacity (which is decision specific) has an incredibly low bar; whether this is right I don’t know. Even when the person lacks capacity his/her wishes will be honoured unless the situation is dangerous or grossly unsatisfactory or the carer has reached carer breakdown or threatened to walk away. The insistence that 4 carer visits a day be tried before a care home can be considered relates to the law or policy (I’m not sure which it is) that the least restrictive option must always be adopted.
Although carers have rights to a carer’s assessment and to support following that anything proposed is often scuppered by the PWD’s refusal to have carers / accept a companionship carer / go to day care / go into respite. They can’t be compelled and so sources of support are abandoned.
SS are dogmatic in their view that people are always better off in their own homes (regardless of the detriment to the carer) and that care homes are a last resort when everything else has been tried and has failed. Actually, people can be better off in a care home, particularly those who live alone and receive few visits from family and friends. IMO, SS’ model of families and community support is woefully out of date. There are increasing numbers of people without close family nearby or who have no close family who are able to provide much or any support. Many friends drift away and there is no longer a cohort of middle aged women with time on their hands and able to look out for vulnerable neighbours and people living locally.
Although carers have rights to a carer’s assessment and to support following that anything proposed is often scuppered by the PWD’s refusal to have carers / accept a companionship carer / go to day care / go into respite. They can’t be compelled and so sources of support are abandoned.
SS are dogmatic in their view that people are always better off in their own homes (regardless of the detriment to the carer) and that care homes are a last resort when everything else has been tried and has failed. Actually, people can be better off in a care home, particularly those who live alone and receive few visits from family and friends. IMO, SS’ model of families and community support is woefully out of date. There are increasing numbers of people without close family nearby or who have no close family who are able to provide much or any support. Many friends drift away and there is no longer a cohort of middle aged women with time on their hands and able to look out for vulnerable neighbours and people living locally.
Hi @ Violet Jane, yes capacity is a huge problem but I think the whole issue needs to evolve to be more collaborative. The stigma of dementia means that PWD disguise their symptons and have terrors about their future. I am no expert and may be completely wrong but I'm sure that many of their behaviours are influenced by how they see their disease.
The whole issue of capacity needs to be reviewed, I am sure you like me have found that it is used as a very blunt instrument when you are the carer. Sometimes your person is allowed capacity when they obviously can't make appropriate decisions then other times SS controls everything.
My experience with SS was horrendous but they insisted Nursing Home was the only option. I had no say in it between them and the Psychiatrists but I absolutely agree that Nursing/ Care Home can be a much better option. My husband has a much better life in the Home and is better looked after than I could manage. Plenty of activities and very kind carers.
I hope in the future other carers get a better deal
Reading some of these messages I feel like I could have typed them myself.
My husband is even more affectionate and always telling me he loves me so much etc. I can't answer him, I don't love him.
My mind is so full of the things I have to do - running the house, financial things, driving, planning etc etc etc. And then he makes my life so difficult, causes problems and denies or changes the subject. Tells me off for shouting at him - I know I shouldnt and I feel bad about it but he drives me to it.
I feel like I want to walk out but then how would he survive without me - so I guess perhaps there is some love there or I wouldnt care about him.
Today has been a hard day literally from 2 minutes after we got out of bed. We will then get to bed and as he does nearly every night he will want sex. I have absolutely zero desire. After the day dealing with such an unpleasant peson I have any desire has completely gone
My husband is even more affectionate and always telling me he loves me so much etc. I can't answer him, I don't love him.
My mind is so full of the things I have to do - running the house, financial things, driving, planning etc etc etc. And then he makes my life so difficult, causes problems and denies or changes the subject. Tells me off for shouting at him - I know I shouldnt and I feel bad about it but he drives me to it.
I feel like I want to walk out but then how would he survive without me - so I guess perhaps there is some love there or I wouldnt care about him.
Today has been a hard day literally from 2 minutes after we got out of bed. We will then get to bed and as he does nearly every night he will want sex. I have absolutely zero desire. After the day dealing with such an unpleasant peson I have any desire has completely gone
@BeeBeeDee
please speak to your husband’s GP or the memory clinic about his unwanted sexual demands on you. No one should be pressured into sex unwillingly. That would be classed as a criminal offence but somehow the perpetrato having dementia means it’s brushed under the carpet but the authorities.
please speak to your husband’s GP or the memory clinic about his unwanted sexual demands on you. No one should be pressured into sex unwillingly. That would be classed as a criminal offence but somehow the perpetrato having dementia means it’s brushed under the carpet but the authorities.
I think more practical help and advice should be available for the carer. My husband went from a loving, generous, caring husband with a few memory problems to a monster within the space of an hour. I couldn't find anyone to help me sort out my feelings or tell me how to deal with this. I rang 111 and was told by a young man there that my husband had 'gone into final stage'. You can imagine what I thought about that. I was hysterical but he just said someone would ring me back. They didn't. I rang numerous numbers that he gave me and was either left hanging on the phone or given even more numbers to ring which also left me hanging or gave me even more numbers. It was an endless struggle to try and help my husband through this difficult time. As it was Christmas, it was even harder to navigate. Whenever I did manage to speak to someone, the standard answer was 'there is no script - you have to find out what works'.
I always believed 'crisis point' creeps up on you. WRONG!! It hits you like a punch in the face when you least expect it. At THAT point you need to be able to find someone who will act like those people in those adverts - smiling, offering perfect advice, making you feel you are coping when you know you are not.
Social Workers and Psychiatrists (in my experience) were very happy to make a very LARGE note on our records when a 'good neighbour' or 'friend' was mentioned. Talk about passing the buck. Needless to say the neighbour and friend have now drifted away and avoid me as much as possible. The social worker wanted my brother's phone number so he could help if needed. She didn't ask where he was of if there was any problem with that. The fact that he lives 120 miles away and is totally blind makes a huge difference. I was lucky that he was always able to make time for me on the phone but beyond that, he couldn't help.
The social worker's supervisor criticised me for 'not understanding dementia' when my crisis first hit me. Who does? I certainly didn't at that stage. For me, at that point, dementia meant 'loss of memory, slight confusion, lack of concentration'. One hour later it meant 'aggression, threats of violence, not knowing where he was or where his parents were (they died 30 years ago), not recognising who I was, seeing hundreds of people in the house that frightened him and him searching for me through these people, not recognising our neighbour of 40 years, being scared and vulnerable'. How was I to know what all this meant or if it was permanent or he would recover?
I agree that this is a major problem just waiting to explode. No doubt the government will then make all sorts of promises and promise all sorts of funding but it will be too late. The genie will be out of the bottle. God help us all!!
I always believed 'crisis point' creeps up on you. WRONG!! It hits you like a punch in the face when you least expect it. At THAT point you need to be able to find someone who will act like those people in those adverts - smiling, offering perfect advice, making you feel you are coping when you know you are not.
Social Workers and Psychiatrists (in my experience) were very happy to make a very LARGE note on our records when a 'good neighbour' or 'friend' was mentioned. Talk about passing the buck. Needless to say the neighbour and friend have now drifted away and avoid me as much as possible. The social worker wanted my brother's phone number so he could help if needed. She didn't ask where he was of if there was any problem with that. The fact that he lives 120 miles away and is totally blind makes a huge difference. I was lucky that he was always able to make time for me on the phone but beyond that, he couldn't help.
The social worker's supervisor criticised me for 'not understanding dementia' when my crisis first hit me. Who does? I certainly didn't at that stage. For me, at that point, dementia meant 'loss of memory, slight confusion, lack of concentration'. One hour later it meant 'aggression, threats of violence, not knowing where he was or where his parents were (they died 30 years ago), not recognising who I was, seeing hundreds of people in the house that frightened him and him searching for me through these people, not recognising our neighbour of 40 years, being scared and vulnerable'. How was I to know what all this meant or if it was permanent or he would recover?
I agree that this is a major problem just waiting to explode. No doubt the government will then make all sorts of promises and promise all sorts of funding but it will be too late. The genie will be out of the bottle. God help us all!!
That social worker was so out of order, @Rishile. I think that a lot of health and social care professionals don't understand dementia.
What you said about the professionals taking a great deal of interest in friends and relatives is interesting. My elderly friend had a helpful next-door neighbour and one day a district nurse saw him and wanted to take his details and put him down as a support to my friend. He really didn't like that and I felt that he noticeably withdrew afterwards. Friends and neighbours may provide support to a PWD living alone but they tend to withdraw as time goes on for a variety of reasons, particularly if they feel that family members should be doing more or the PWD's behaviour becomes difficult or they have to clean up (the PWD's home and sometimes the PWD). People hate assumptions being made and many don't want to commit to anything.
What you said about the professionals taking a great deal of interest in friends and relatives is interesting. My elderly friend had a helpful next-door neighbour and one day a district nurse saw him and wanted to take his details and put him down as a support to my friend. He really didn't like that and I felt that he noticeably withdrew afterwards. Friends and neighbours may provide support to a PWD living alone but they tend to withdraw as time goes on for a variety of reasons, particularly if they feel that family members should be doing more or the PWD's behaviour becomes difficult or they have to clean up (the PWD's home and sometimes the PWD). People hate assumptions being made and many don't want to commit to anything.
I agree @Violet Jane about friends and neighbours. I called on my neighbour quite a few times last year because I wasn't coping and, for some reason, my neighbour could get through to my husband and help him when I couldn't. I think, over time, they felt they were helping more than they were comfortable with but still continued (bless them!!). When my husband came home from hospital, they started to withdraw and I haven't seen them much at all and when I have they have been polite but that was all. They probably felt they would be thrown back into helping me again. I have decided to give them space to realise I don't seem to need their help any more but let them realise that in their own time. I hope they can be the neighbours we have lived next door to for 40 years again but it will take time.
I think that you’re right, @Rishile, that your neighbour fears being drawn into dementia ‘drama’ again. She may have felt that someone else (SS, the GP etc) should have been helping you or that you should have been asking for more support from the people who are trained and paid to provide that support.
Apart from that, in my experience, people don’t want to be around people with dementia. I was very disappointed with my elderly friend’s actual friends. I knew her from the church that I had stopped going to some years earlier. My husband had agreed to be her financial attorney but, for some reason, she always gave my name to all health and social care professionals (which I didn’t mind). I became like a next of kin but her actual friends didn’t visit her much, although I accept that Covid was a factor as some were shielding in the early days. I was cross because all they had to do was visit and be her friend. My husband and I dealt with everything else. When they visited they visited as a group or if one friend visited she wanted me to be there as well. Even now, I feel upset on her behalf.
Apart from that, in my experience, people don’t want to be around people with dementia. I was very disappointed with my elderly friend’s actual friends. I knew her from the church that I had stopped going to some years earlier. My husband had agreed to be her financial attorney but, for some reason, she always gave my name to all health and social care professionals (which I didn’t mind). I became like a next of kin but her actual friends didn’t visit her much, although I accept that Covid was a factor as some were shielding in the early days. I was cross because all they had to do was visit and be her friend. My husband and I dealt with everything else. When they visited they visited as a group or if one friend visited she wanted me to be there as well. Even now, I feel upset on her behalf.
Yes, I think you are right but the GP and SS were NOT helping at that stage. The neighbour knew I was trying to get help and they tried to help with that but it was like banging my head on a brick wall. When you have no experience of dementia, you need someone to guide you through all the options but the help I received - when I started to receive it - was useless and just made the problems much, much worse.
I have said on this forum before that my husband was sectioned and that was the best thing that happened. The staff at the hospital totally understood dementia and did everything they could for both of us. I was supported throughout the time he was in hospital - and it wasn't easy - and they supported me in trying to get him home safely. The social workers wanted him to go to another care home but the hospital supported my request for him to come home and we all worked together to achieve it.
I think the best thing SS did was allocate me a social worker. I felt I had someone I could call upon if things were difficult in the early days of him being home. Someone who would look at things from my point of view. I understand the PDW needs a social worker but it should be a standard process to allocate one to the main carer.
It is wonderful that your husband says "I feel the closest I've ever felt to you" in some ways. So maybe hold onto that....
But it's no surprise that you don't feel the same.
It's a really painful relationship shift.
I can only advise you that he is ill, that he is at the start of a progressive disease and to get as much information as you possibly can.
Sorry this is anecdotal but it's the best I can give - in the early days 10 years ago in this journey, pre diagnosis, my husband had to stop work due to depression and not being able to cope with work ( clearly the start of his dementia.)
I then upped my game and got the best job I ever had - for a year!
During this time out of the blue he went on an absolute gambling binge, betting shops and online. Maxed out credit cards, got a new credit card, didn't pay the council tax and our car got clamped in the drive....
I absolutely hated him with a vengeance, I honestly could have strangled him with my bare hands.
He was the most lovely person and an amazing father - then this absolute bombshell.
Phew! So any advice is to get your finances in order so the same cannot happen to you.
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