Loving my husband less

[JaxG]

That is an outrageous thing to say to you. It is not your responsibility to cope with behaviour that a care home can't. And, your home is disregarded in any financial assessment, so it would NOT have to be sold if your husband needs a permanent placement. That social worker is out of order, in a major way, and if anything like this comes up again I would strongly advise you contact the AS helpline or Citizens Advice or Age UK for support in challenging this attempt to intimidate you.

I am also still puzzled by why you are having to pay off your husband's debts, and I hope you have taken some form of professional advice about that.

Hi @Veritas , the reason I was told I would have to sell my home is because OH is not deemed bad enough to need permanent care. Therefore me leaving would be considered divorcing him and he would be entitled to 50% of what is left. I was absolutely shocked by this. Safeguarding's advice has always been to leave the home if you feel in danger, but what this actually means is that if the aggression can't be brought under control then you will have to sell the family home. My OH could not live alone, he can feed and dress himself, is not incontinent and can make a cup of tea, but beyond that he doesn't know what day it is or what time of day. He can't dress appropriately, prepare meals, take his medication, gets lost outside the flat, can't manage money or appointments, needs reminding to do EVERYTHING, struggles with working the TV and any technology. In the last month the boiler has broken down and we've had a burst pipe - he would never have been able to manage this.
Re the debt: He ran up debt on joint accounts to fund his failing business, stole money out of my savings account, took on credit cards and ran up debt on his business, but he then put the debt management plan in both our names. I did manage to get a credit card written off just in his name, I possibly could have got business debt written off due to his dementia, but I was told the large tax bill would come out of his estate - all that was left is our home, and we were paying interest on the tax bill.
The whole process of living with someone with dementia has been a shocking revelation, how little support there is, but this story has been told on this forum hundreds of times.

 

[Veritas]

@JaxG
The question SS need to ask themselves is what would happen if you weren’t there. If you leave the home for your own safety no reasonable person could possibly consider that as tantamount to divorce. You need some proper advice from someone who isn’t trying to protect their budgets.

On the debt - I’m so sorry this happened to you. The sense of betrayal must have been huge, even if his dementia accounted in large part for his behaviour.

 

[Mike Doncaster]

Have had another tough weekend.
My husband is getting increasingly aggressive, I am waiting to see if the memory clinic will start him on Memantine. I am going to send the community nurse yet another email, stress how I am getting so anxious.
yesterday ( Saturday ) p.m his mood changed suddenly and it was because I drove ‘ his ‘ car and he couldn’t anymore and was stuck at home and I refused to take him anywhere ( 100% not true), we were out twice yesterday even though it was raining and Friday we were out for lunch. His accusations escalate, the abusive names starts, the threats, all what I have spoken about before. He’s going to sell the house, see me in the gutter
Today was a quiet day, he slept a while and complained of a headache in the afternoon. We had a day watching football on and off. More tele until 8 p.m, then he said he was off to bed ( increasingly early of late ) and I said I’d watch Antique Roadshow. He made a sarcastic. remark, went upstairs, immediately came back down, slamming doors. Internal alarm bells rang and I started to come to bed, trying to avert an arguement…….too late. It is now after 1a,m, I am resting fully clothed on the settee ( ready for escape? ) after being called the most Vile names, ordered to sit down, shut up, sleep in that room, sleep in this room, have had to sign a piece of paper saying I am staying temporarily ( I’m trying to diffuse the situation, doing anything he orders ) promise to obey the rules of the house , apologise and say how grateful I am. He’s taken my money, but I’ve hid my phone and bank cards. He says he won’t have me slagging him off day after day. Believe me it’s more than my life is worth to tell him it’sthe other way around! It’s unbareable, I.lay here dreading hearing movement from upstairs. I know it’s his dementia but this disease will drive us both to an early grave, Roll on morning and thanks for reading this .

 

[Mike Doncaster]

I think it is true to say that no carer has all the shared experiences of another. My previously lovely much loved wife turned to a monster. We used to go out for lunch, evening meals but that had to stop because she would attack people with her walking stick, going so far as to say that is what it was for. I had bottles of water poured on my head as I sat in the living room on numerous occasions, meals, books thrown at me, I've had to disarm her when she threatened to 'glass' my disabled son on more than one occasion. Looking after her consumed every waking hour. On so very many occasions I retreated to the kitchen and cried. Eventually my daughter persuaded me that I couldn't carry on, saying on many occasions, "dad this is going to kill you". My wife is currently in a NHS mental health facility having been Sectioned although just over a year ago she went into residential care. The time comes when you have to let go. Although undoubtedly you love your husband very much there comes a point at which you have to admit to yourself that you simply cannot go on as you are. I am I hope slowly recovering, it has impacted my mental health hugely. I am simply not the man I used to be. I used to be a very organised person, now I have to think hard what the hell it is I am supposed to be doing. Think of your own well being because what you are experiencing will be affecting you into the future.

 

[Skylark/2]

Hello @Mike Doncaster .
I am full of admiration for your fortitude and acceptance in the face of how this horrendous disease changed your wife. I certainly couldn’t manage and confess I spend the lonely waking hours ( mostly every night ) planning how to make the most of what years I have left. Dementia robs not just the affected but the carer too…..something my husband doesn’t accept. ‘ What have you got to worry about ‘ is his reply whenever I try and explain.
I wish you all the very best on your daily recovery, be kind to yourself. I hope you have friends and family near by who you can lean on and confide in. Remember Time is a Great Healer.

 

[Mike Doncaster]

Have had another tough weekend.
My husband is getting increasingly aggressive, I am waiting to see if the memory clinic will start him on Memantine. I am going to send the community nurse yet another email, stress how I am getting so anxious.
yesterday ( Saturday ) p.m his mood changed suddenly and it was because I drove ‘ his ‘ car and he couldn’t anymore and was stuck at home and I refused to take him anywhere ( 100% not true), we were out twice yesterday even though it was raining and Friday we were out for lunch. His accusations escalate, the abusive names starts, the threats, all what I have spoken about before. He’s going to sell the house, see me in the gutter
Today was a quiet day, he slept a while and complained of a headache in the afternoon. We had a day watching football on and off. More tele until 8 p.m, then he said he was off to bed ( increasingly early of late ) and I said I’d watch Antique Roadshow. He made a sarcastic. remark, went upstairs, immediately came back down, slamming doors. Internal alarm bells rang and I started to come to bed, trying to avert an arguement…….too late. It is now after 1a,m, I am resting fully clothed on the settee ( ready for escape? ) after being called the most Vile names, ordered to sit down, shut up, sleep in that room, sleep in this room, have had to sign a piece of paper saying I am staying temporarily ( I’m trying to diffuse the situation, doing anything he orders ) promise to obey the rules of the house , apologise and say how grateful I am. He’s taken my money, but I’ve hid my phone and bank cards. He says he won’t have me slagging him off day after day. Believe me it’s more than my life is worth to tell him it’sthe other way around! It’s unbareable, I.lay here dreading hearing movement from upstairs. I know it’s his dementia but this disease will drive us both to an early grave, Roll on morning and thanks for reading this .

Everyone on this forum has one shared experience, Alzheimers but that is where it ends. The form that the suffering of the carer takes seems to differ but one thing that I do know to be the same, the carer suffers substantially. I was eventually persuaded to let go. My wife has been in care suffering with alzheimers for over a year and I am still recovering. Let go before it destroys your health and mental well being.

 

[JaxG]

I think it is true to say that no carer has all the shared experiences of another. My previously lovely much loved wife turned to a monster. We used to go out for lunch, evening meals but that had to stop because she would attack people with her walking stick, going so far as to say that is what it was for. I had bottles of water poured on my head as I sat in the living room on numerous occasions, meals, books thrown at me, I've had to disarm her when she threatened to 'glass' my disabled son on more than one occasion. Looking after her consumed every waking hour. On so very many occasions I retreated to the kitchen and cried. Eventually my daughter persuaded me that I couldn't carry on, saying on many occasions, "dad this is going to kill you". My wife is currently in a NHS mental health facility having been Sectioned although just over a year ago she went into residential care. The time comes when you have to let go. Although undoubtedly you love your husband very much there comes a point at which you have to admit to yourself that you simply cannot go on as you are. I am I hope slowly recovering, it has impacted my mental health hugely. I am simply not the man I used to be. I used to be a very organised person, now I have to think hard what the hell it is I am supposed to be doing. Think of your own well being because what you are experiencing will be affecting you into the future.

I am so sorry for what you have endured - no one should have to live like this. Your experiences are shared by so many, and yes, it destroys your own life and your mental health. My life as a carer is barely worth living - I only keep going because I have children and grandchildren and one day this will be over. It is truly devastating.

 

[JaxG]

Hello @Mike Doncaster .
I am full of admiration for your fortitude and acceptance in the face of how this horrendous disease changed your wife. I certainly couldn’t manage and confess I spend the lonely waking hours ( mostly every night ) planning how to make the most of what years I have left. Dementia robs not just the affected but the carer too…..something my husband doesn’t accept. ‘ What have you got to worry about ‘ is his reply whenever I try and explain.
I wish you all the very best on your daily recovery, be kind to yourself. I hope you have friends and family near by who you can lean on and confide in. Remember Time is a Great Healer.

Yep my husband says the same - that it's alright for me. Dementia does rob the carer of their life too, it's no life worth living.

 

[JaxG]

@JaxG
The question SS need to ask themselves is what would happen if you weren’t there. If you leave the home for your own safety no reasonable person could possibly consider that as tantamount to divorce. You need some proper advice from someone who isn’t trying to protect their budgets.

On the debt - I’m so sorry this happened to you. The sense of betrayal must have been huge, even if his dementia accounted in large part for his behaviour.

Thank you @Veritas . Yes the debt was a huge betrayal not through dementia but pure self interest and ego. The dementia has been the final insult, the aggression and violence and being left to pay his debts. The medication is making him calmer now, but living like this is just miserable.

 

[Veritas]

Thank you @Veritas . Yes the debt was a huge betrayal not through dementia but pure self interest and ego. The dementia has been the final insult, the aggression and violence and being left to pay his debts. The medication is making him calmer now, but living like this is just miserable.

I'll bet it is. I'm not dealing with anything like what you've got on your plate, but it is hard being lonely/sad/irritated/frustrated for much of the time, let alone feeling like one's been banged up for commiting some unknown offence!

I wouldn't discount the possibility that dementia played a part in what your husband was doing. I get from what you say that his natural personality was important, but it could be that very early dementia reduced his capacity to judge risk and/or to moderate his need to protect his ego. When I look back I know my husband was symptomatic to some extent for at least ten years before he was diagnosed, but at the time the idea of dementia in its earliest stages didn't occur to me.

I am glad the medication is helping, but if the aggression/violence resurfaces, shout for help at once and don't take no for an answer. There is absolutely no reason why you should leave your home when the issue is that it is his dementia that is causing the difficulties and putting you at risk.

 

[JaxG]

Thank you @Veritas, and yes it is like 'being banged up for some unknown offence'!! It is so lonely and miserable, I just feel that if my OH had been a kinder person before this disease it would have been easier to deal with. I can trace the start of dementia symptoms back to about 2015, there is no doubt that dementia played a part in the debt after that, but prior to that it was the financial crash that did nor him!!

 

[Coastalmumscat]

Have had another tough weekend.
My husband is getting increasingly aggressive, I am waiting to see if the memory clinic will start him on Memantine. I am going to send the community nurse yet another email, stress how I am getting so anxious.
yesterday ( Saturday ) p.m his mood changed suddenly and it was because I drove ‘ his ‘ car and he couldn’t anymore and was stuck at home and I refused to take him anywhere ( 100% not true), we were out twice yesterday even though it was raining and Friday we were out for lunch. His accusations escalate, the abusive names starts, the threats, all what I have spoken about before. He’s going to sell the house, see me in the gutter
Today was a quiet day, he slept a while and complained of a headache in the afternoon. We had a day watching football on and off. More tele until 8 p.m, then he said he was off to bed ( increasingly early of late ) and I said I’d watch Antique Roadshow. He made a sarcastic. remark, went upstairs, immediately came back down, slamming doors. Internal alarm bells rang and I started to come to bed, trying to avert an arguement…….too late. It is now after 1a,m, I am resting fully clothed on the settee ( ready for escape? ) after being called the most Vile names, ordered to sit down, shut up, sleep in that room, sleep in this room, have had to sign a piece of paper saying I am staying temporarily ( I’m trying to diffuse the situation, doing anything he orders ) promise to obey the rules of the house , apologise and say how grateful I am. He’s taken my money, but I’ve hid my phone and bank cards. He says he won’t have me slagging him off day after day. Believe me it’s more than my life is worth to tell him it’sthe other way around! It’s unbareable, I.lay here dreading hearing movement from upstairs. I know it’s his dementia but this disease will drive us both to an early grave, Roll on morning and thanks for reading this .

 

[Skylark/2]

Am kicking myself, I must ( really?) curb my big mouth ( according to my husband ).
All fine this morning until I drove us to the paper shop. As he got out of the car I said ‘ We only need the Sunday Times ‘ this was because we read The Independent ( it covers both Saturday and Sunday and we got it yesterday ). When he got back in the car he had both papers and was shouting that I wasn’t to tell him what to do, order him about, etc.,. I was so shocked, didn’t say anything but drove us to a cafe for a morning coffee. However he continued to shout me down when I tried to explain so I said I didn’t need to sit and listen to him, got up and went back to the car. He just carried out for the next 2 hours, I admit I lost my temper ( big mouth answering back ) but I’m tired, awake since 2 a.m as he wouldn’t sleep and fed up with the same verbal abuse most days. I think it’s called coercive behaviour, in my day , years ago, it was the man just ’ laying down the law!’
He now has type 2 diabetes and the nurse is concerned about his weight loss. She alerted the dr. and on Friday afternoon the g.p phoned and said she was referring husband for a CT scan of his pancreas. Of course I am now thinking Pancreatic cancer? but haven’t mentioned it to husband as don’t want to make him anxious BUT hate myself for the fleeting thought ‘ am I bothered ‘ . Never in all my 77 years did I think I would have those thoughts, have loved this man since I was 16, but no longer!

 

[DeeCee7]

Oh @Skylark/2 you are leading a lesser life because of your husband’s attitude and behaviour. You must feel you are treading on eggshells about what you say to him, even innocuous simple advice on newspaper purchases! My Nan used to say, “ sometimes I feel I have to take the words out of my mouth and look at them before I say them!” I am glad you are standing up for yourself. It must be hard to feel you are changing because he is changing. He’s not the man you fell in love with, that was in the past, and one day when this too has passed, you will be able to cherish the earlier memories when you were together before this awful disease. Not much solace now I know. But things will change one day.

 

[JaxG]

@Skylark/2 you can't go on like this, this is verbal aggression and abuse and is part of domestic violence. It might be caused by the dementia but this does not limit the impact on you and your mental health. I urge you to contact your doctor and the adult mental health team and tell them you can't cope any more, you will be ill. I was in your position 8 months ago, I could do nothing without being shouted at and physically intimidated, pushing shoving and threats to punch me. This is no way to live. I have been with my husband for 42 years, never an easy man, but I have been dealing with the raised level of aggression for about 6 years now and it has killed anything I once felt for him. I also feel that the quality of both our lives is very poor, he has no short term memory, gets lost outside the home, he does nothing all day and it's not much of a life. If he was diagnosed with other illnesses it would shorten the torture for us both. I hope you can get help - my OH is on Risperidone and he is much calmer now.

 

[Skylark/2]

Thank you for your sympathetic replies, much appreciate.
Husband has calmed down , saying usual apologies and it won’t happen again ( of course it will ) but I still feel battered and bruised…….not physically………yet!
We have the dr. from the memory clinic coming on Wednesday, I’m pinning my hopes that he’ll suggest a change in meds. Husband will be charming of course. I wonder if I record his rants and abuse, do mobile phones have that facility.

 

[jennifer1967]

Thank you for your sympathetic replies, much appreciate.
Husband has calmed down , saying usual apologies and it won’t happen again ( of course it will ) but I still feel battered and bruised…….not physically………yet!
We have the dr. from the memory clinic coming on Wednesday, I’m pinning my hopes that he’ll suggest a change in meds. Husband will be charming of course. I wonder if I record his rants and abuse, do mobile phones have that facility.

yes and videos. the video you can get from pressing camera. my recorder is under tools if that helps

 

[Skylark/2]

yes and videos. the video you can get from pressing camera. my recorder is under tools if that helps

Thank you, I’m not Tech savvy but will look into it.

 

[Kath610]

Am kicking myself, I must ( really?) curb my big mouth ( according to my husband ).
All fine this morning until I drove us to the paper shop. As he got out of the car I said ‘ We only need the Sunday Times ‘ this was because we read The Independent ( it covers both Saturday and Sunday and we got it yesterday ). When he got back in the car he had both papers and was shouting that I wasn’t to tell him what to do, order him about, etc.,. I was so shocked, didn’t say anything but drove us to a cafe for a morning coffee. However he continued to shout me down when I tried to explain so I said I didn’t need to sit and listen to him, got up and went back to the car. He just carried out for the next 2 hours, I admit I lost my temper ( big mouth answering back ) but I’m tired, awake since 2 a.m as he wouldn’t sleep and fed up with the same verbal abuse most days. I think it’s called coercive behaviour, in my day , years ago, it was the man just ’ laying down the law!’
He now has type 2 diabetes and the nurse is concerned about his weight loss. She alerted the dr. and on Friday afternoon the g.p phoned and said she was referring husband for a CT scan of his pancreas. Of course I am now thinking Pancreatic cancer? but haven’t mentioned it to husband as don’t want to make him anxious BUT hate myself for the fleeting thought ‘ am I bothered ‘ . Never in all my 77 years did I think I would have those thoughts, have loved this man since I was 16, but no longer!

Hi @Skylark/2 , my husband has had type 2 diabetes for years, controlled by daily testing and insulin injections - which he can still do independently but only because I keep a written record and supervise the testing ( and I’m the one who does nothing and doesn’t help him at all….)
All I can say at this time is that the Memantine is having an effect. He has been on it for about a month now and the dosage is gradually being increased, 10mg at present and about to go up to 15, stopping at 20. He’s not perfect, still has hissy fits and whinges at me but the sundowning has decreased and the furious rages have died down.
Did you say your OH was being considered for it? If so, try and push for it. I wasn’t expecting miracles and life is far from what I would like it to be, but it’s much easier at present.
I totally understand your reaction to his impending medical checks. Totally. And I bet many people on here feel the same. He was whining about not feeling well and being at death’s door a few days ago, more man flu - I just thought “Hope it’s nothing trivial…” but of course it was just a slight cold. So on we go. Chase up the Memantine and blame the doctor/clinic.

 

[Skylark/2]

Hi @Skylark/2 , my husband has had type 2 diabetes for years, controlled by daily testing and insulin injections - which he can still do independently but only because I keep a written record and supervise the testing ( and I’m the one who does nothing and doesn’t help him at all….)
All I can say at this time is that the Memantine is having an effect. He has been on it for about a month now and the dosage is gradually being increased, 10mg at present and about to go up to 15, stopping at 20. He’s not perfect, still has hissy fits and whinges at me but the sundowning has decreased and the furious rages have died down.
Did you say your OH was being considered for it? If so, try and push for it. I wasn’t expecting miracles and life is far from what I would like it to be, but it’s much easier at present.
I totally understand your reaction to his impending medical checks. Totally. And I bet many people on here feel the same. He was whining about not feeling well and being at death’s door a few days ago, more man flu - I just thought “Hope it’s nothing trivial…” but of course it was just a slight cold. So on we go. Chase up the Memantine and blame the doctor/clinic.

Hi @Kath610.
Thank you for your reply and understanding.
We have just returned from g.p’s re my husband’s trigger finger, I can’t believe how pleasant my husband is when chatting to the medical profession! He was also suppose to provide a urine sample, using a pee pot was beyond him, he peed on the lid not in the pot! I’d showed him to take the lid of first , sadly not understood.
Your remarks about the effect of Memantine is reassuring and it’s a plus that you say the sundowning has decreased. I thought Memantine was just for aggression . We have a home visit from the memory clinic dr. on Wednesday.
Re my husband’s sundowning , he was getting ready for bed at 4 p.m yesterday afternoon! I persuaded him to stay downstairs until 6 p.m but then off he went. At 7.15 p.m he was demanding I come to bed! Up and down 3 times in the night, lights on and off, dressed by 4 a.m but then came back to bed. Up again at 5 a.m , by which time I’d given up trying to get back to sleep. My husband’s ’ bedtime’ is getting earlier and earlier. If anyone has any tips/advice re sundowning, please, please share.