Loving my husband less

[Violet Jane]

You really must detail all these problems in writing and make sure that the GP, Memory Clinic etc see them as your husband is clearly an expert at host mode.

Sleep problems are common with dementia and often herald a move into residential care as it's very difficult if not impossible to resolve them. The body clock has been damaged and the PWD doesn't recognise the problem, can't adopt strategies for trying to sleep and doesn't have the insight into not disturbing other people.

Do you feel that your husband is ready for residential care? What you are going through is intolerable.

 

[57mj]

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 .

I have the same with my husband. Its been at least 7 years and the last 3 years have escalated to a most unmanageable level. I am at the end of the line. The vile names story things I have suppose to have taken place in. See is a top topics which disgusts me of what he says. My husband isn't the same man anymore. His family were helping but that has caused extra stress for me. I have no answers any more but when it is happening to you you feel totally alone.

 

[chrisand999]

Skylark/2 I am so sorry that you are going through this. My partner was similar in some ways 2 years ago. She is now in a Care home and I visit most days.
It is essential to get some regular support from your local Memory service until medication is found that can help you both. Tina, takes Memantine to try and slow down the effects of Alzheimers on her brain.
Risperidone to help with her difficult behaviour. Difficulties out in car, difficulties wanting to go out when it is dark, difficulties in putting on all the clothes she can find during the night etc.
She has also been prescribed Pregabalin for Anxiety.
Different people respond to medications differently, some of the people I meet at local Carers groups and Memory cafe, find that Sertraline can be very helpful.
The person with Alzheimers is very often in denial - they cannot help this.
They are often very confused about where they are, who you are, and why they cannot just do what they want to do.
They may be frustrated by no longer being able to drive, or pop out alone.
We had to have window restrictors put on our windows so she did not climb out of windows during the night. Eventually we had a live -in Carer but now she has settled in a Care home.
I hope you have applied for higher rate attendance allowance and blue badge for the car. Also reduction in council tax for the person with mental impairment.
I hope you have already got Power of Attorney in place so that you can make future decisions for your husband's care when the time comes.
Then you can start to use this money to get Carer support for you to have a break. Eventually the behaviour is likely to change. If you jointly own your home it is best to get good information and guidance from Age Uk, or Carers Uk. Most people find out that it is better to stay put in the marital home in order to preserve the value of their share. Money is not everything, but in a few years time you will need your home and some share of the joint finances for your own care and wellbeing.
Please try and join a local Carers group and see whether there are Day Centre places where your husband might go once or twice a week to give you a break.
Hoping you get the support you need soon

 

[HelenBC]

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 .

Sending love and strength to you. I am in my 40s, my husband in his 50s has early onset dementia. I recognise your experience (although not quite as extreme…. Yet…. We know it’s coming). Zero help so far from NHS. Agree with other posts about escalation to reach that help. Social Services budgets so strapped that action is avoided until there is an imminent cost/benefit scenario. Never mind him taking medication…. I’ll need some myself soon….. living in a constant fight/flight scenario (whilst working full time to keep our home). Superwoman ain’t got nothing on us ❤️

 

[try again]

I would suggest you trigger him when they come round to visit. Let them see his behaviour.
Tell them how it is and if he kicks off all the better

 

[Sarasa]

I was thinking that you need to try and trigger things off, or at the very least signal to the people chatting to your husband that things aren't quite what he is telling them. They won't know unless you tell them

 

[try again]

With mum all it took was me mentioning that she accused me of stealing from her.

Then we had a rant, the search for her hidden cheque book that I'd written out all the cheques. The demands that they look (which of course I hadn't, I left it up to them to try and explain).

 

[gk_loves]

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 .

Hi Skylark

May I suggest making an urgent appointment with your GP and speak to the GP about the possible police envolvement due to his aggression and how unsafe your environment is now. I understand the police envolvement is a very scary prospect but, if you are forced to leave or he physically harms you will need support and I believe when there is police envolvement with an individual with dementia cases do get dealt with alot quicker. I do feel for you and I do wish I could be there for you.
Sending Love and Strength

Gk_loves.

 

[maisiecat]

You may also find your local A and E have an emergency mental health team whicn the police can access.

 

[Kath610]

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.

Hi, yes Memantine is for aggression and so far - keeping everything crossed - the aggression is dying down. There are still periods of temper, name calling, self pity and sulking but they do not last. I try not to give any reaction, just agree with whatever nonsense is being said and it doesn't last. It hasn't made me like .him any better but it certainly makes his presence easier to bear.
Aggression was always part of the sundowning and the sundowning is till with us. This evening my husband went up to bed three times, at 6, 6:30 and 7, and came back downstairs almost immediately - he couldn't say why but rambled on at one point about the other people. When I asked who these people were, he couldn't answer. I said were they in the house and he said "No - you know who I mean!" It turned out they were friends who came to see us last week
I was watching a recording on tv - I told him I wanted to watch it to the end and that I would go to bed once it was finished. We don't sleep together, which he seems to accept, He sat and watched it with me and we shared a bottle of wine ( I'd already opened it!) which took the up to about 8:30. When it finished, we both went upstairs to our separate rooms.
I find the later I can keep him up, the better he sleeps though there will be wandering and maybe shaving and showering during the night. I know this is not a solution to sundowning but it is working for me at the moment.
Really push for the Memantine and best wishes for tomorrow xx

 

[Firecatcher]

I’d be totally direct with the team when they visit and describe your husbands aggressive behaviour in his presence. Don’t sugar coat or downplay anything. Make sure that they stay long enough to do a thorough assessment of both your needs and don’t be fobbed off with platitudes etc. I’d also tell them you will leave if this continues. TBH I wouldn’t be tolerating any of this and would have walked away a long time ago.

 

[Skylark/2]

Hi, yes Memantine is for aggression and so far - keeping everything crossed - the aggression is dying down. There are still periods of temper, name calling, self pity and sulking but they do not last. I try not to give any reaction, just agree with whatever nonsense is being said and it doesn't last. It hasn't made me like .him any better but it certainly makes his presence easier to bear.
Aggression was always part of the sundowning and the sundowning is till with us. This evening my husband went up to bed three times, at 6, 6:30 and 7, and came back downstairs almost immediately - he couldn't say why but rambled on at one point about the other people. When I asked who these people were, he couldn't answer. I said were they in the house and he said "No - you know who I mean!" It turned out they were friends who came to see us last week
I was watching a recording on tv - I told him I wanted to watch it to the end and that I would go to bed once it was finished. We don't sleep together, which he seems to accept, He sat and watched it with me and we shared a bottle of wine ( I'd already opened it!) which took the up to about 8:30. When it finished, we both went upstairs to our separate rooms.
I find the later I can keep him up, the better he sleeps though there will be wandering and maybe shaving and showering during the night. I know this is not a solution to sundowning but it is working for me at the moment.
Really push for the Memantine and best wishes for tomorrow xx

I agree with so much you have said.
He has been complaining of a headache the last few weeks, behind his ear and I know is starting to get anxious about it. Six months ago he had a sudden migraine headache and I was concerned, got him a g.p appt that same afternoon. She suggested we got it checked out at A&E and ultimately he had a scan. Nothing came to light. I’m saying this because from being a man who never went to the g.p, he now seems to worry about every ache, spot, bruise etc., How do I sort the ‘ wheat from the chaff ‘ as it were. I don’t think he is going to be happy until I make an appointment to see the dr. The surgery will think I’m a worry guts! Will let you know the meeting outcome tomorrow. Thank you.

 

[chrisand999]

Hi @Skylark/2 I have been in exactly the same situation as you. My husband has been extremely verbally aggressive and abusive over the last 5 years. Two years ago he assaulted me, I did call the police, the Older Adult Mental Health team were called and the SW told me to leave him I explained that financially this would be very difficult but nothing was done. He was prescribed Memantine and he did calm a bit.
6 months ago the aggression and verbal abuse started again. He told me that I had brought nothing to our marriage, everything would set him off and he became physically intimidating and threatened to punch me. I contacted adult SS, who contacted my doctor and the mental health team were involved again. This time we had a wonderful SW, he involved a psychiatrist who prescribed anti-psychotic medication, he assessed my husband to no longer have capacity and I get 8 weeks of subsidised respite per year. The anti psychotic medication has worked and my OH is now very calm, but what I would say is you have to really fight for help. I told SS that I was going to leave, that I had reached carer breakdown. Even then I was told that if my husband was violent in the care home, I would have to bring him home. And if everything failed I would have to sell our home so that 50% would finance whatever his care needs were. Given the fact that my husband created huge debts which has already involved two house moves to pay down debts, and 5 years of me working to pay a debt management plan, this solution would have left me with nothing.
As everyone else has said - if you feel threatened - call the police. I work for a domestic abuse organisation, and I know that hitting someone is only a small part of what DV looks like. Verbal aggression and emotional abuse are much more damaging, and leave you feeling threatened and broken. Do tell SS that you will leave, that you are at carer breakdown and that you must have help. It's not easy but you cannot carry on like this, nor should you have to.

 

[chrisand999]

JaxG it is very important you get good financial advice. Social Services cannot require you to sell your home.
Whilst you are living in the marital home - NONE OF ITS VALUE CAN BE COUNTED TOWARDS CARE COSTS. I am assuming you are a UK resident.
Please look at Age uk factsheet 39 age uk org

The article is written from the point of view of the person going into care.
"Property and the financial assessment The value of your former home is disregarded from the financial assessment for as long as your partner remains living in it, after you move into permanent residential care. It can also be disregarded if a relative lives there, depending on their circumstances."
The important word here is DISREGARDED - i.e for as long as you remain living in it, it cannot be counted towards care costs.
The factsheet also deals with joint savings etc. These are usually considered to be 50/50.
Your own personal accounts are also disregarded.

 

[jennifer1967]

I agree with so much you have said.
He has been complaining of a headache the last few weeks, behind his ear and I know is starting to get anxious about it. Six months ago he had a sudden migraine headache and I was concerned, got him a g.p appt that same afternoon. She suggested we got it checked out at A&E and ultimately he had a scan. Nothing came to light. I’m saying this because from being a man who never went to the g.p, he now seems to worry about every ache, spot, bruise etc., How do I sort the ‘ wheat from the chaff ‘ as it were. I don’t think he is going to be happy until I make an appointment to see the dr. The surgery will think I’m a worry guts! Will let you know the meeting outcome tomorrow. Thank you.

mines a bit like that and almost catastrophizing on occasion. i use humour like your leg hasnt fallen off yet or something like that so he laughs about it. or i will say, keep an eye on it and if still the same after couple of days, i will phone. he was never at the gps or took tablets before. it just gives him control without having to phone the doctors. usually he has forgotten about it.

 

[JaxG]

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.

“Hope it’s nothing trivial…” but of course it was just a slight cold. So on we go.

Hahaha ..... know what you mean!!

 

[JaxG]

I agree with what others have said about 'triggering' a reaction. We visited the Memory Clinic when I reported my husbands verbal and physical aggression to our GP. At the appointment my OH told them that things were fine and he didn't know why he was there. I mentioned that he had been very angry at times and he completely lost it, ranting and verbally abusive. I was distraught, broke down and told them I could not carry on. The next appointment was with the Adult Mental Health team and a psychiatrist, he was prescribed Risperidone and slowly things have improved and he is now calm.

 

[JaxG]

JaxG it is very important you get good financial advice. Social Services cannot require you to sell your home.
Whilst you are living in the marital home - NONE OF ITS VALUE CAN BE COUNTED TOWARDS CARE COSTS. I am assuming you are a UK resident.
Please look at Age uk factsheet 39 age uk org

The article is written from the point of view of the person going into care.
"Property and the financial assessment The value of your former home is disregarded from the financial assessment for as long as your partner remains living in it, after you move into permanent residential care. It can also be disregarded if a relative lives there, depending on their circumstances."
The important word here is DISREGARDED - i.e for as long as you remain living in it, it cannot be counted towards care costs.
The factsheet also deals with joint savings etc. These are usually considered to be 50/50.
Your own personal accounts are also disregarded.

Thank you so much for your reply. The problem we seem to have is that, even though my OH no longer has capacity, has no short term memory and could not look after himself long term, he can still dress himself, feed himself and is not incontinent and therefore he is not considered to be ready for permanent care. So I have been told that if I leave because of his aggression and abuse then we would have to divide our assets - which is our home. Fortunately the Risperidone has calmed him down, but it has been a nightmare experience.

 

[Mike Doncaster]

What I would say to all is this. It seems that like all on this portal the carers through a sense of love, duty, faithfullness to marriage vows, all of us plow on doing ourselves huge mental damage, So very many times my daughter said 'dad you cannot carry on like this it's going to kill you'. When I finally acknowledged that I really could not go on I felt such huge sorrow, grief. A feeling that I was running away from caring for the woman I loved so very dearly and still do. What I am coming to realise is that my wife is now receiving a level of care that I could not match. So although there is still a huge hole in my life I am coming to terms with the idea that I have not run, I have ensured her care and that is what I promised on our marriage. Doesn't stop my daily anguish but we all have to care for ourselves as well.

 

[Mike Doncaster]

Thank you so much for your reply. The problem we seem to have is that, even though my OH no longer has capacity, has no short term memory and could not look after himself long term, he can still dress himself, feed himself and is not incontinent and therefore he is not considered to be ready for permanent care. So I have been told that if I leave because of his aggression and abuse then we would have to divide our assets - which is our home. Fortunately the Risperidone has calmed him down, but it has been a nightmare experience.

I am saddened by what you say. My wife at the time of her being deemed ready for permanent care home residency. Apart from behaviour previously described sat all day in bra, knickers and a dressing gown, when hot no gown. She mostly didn't bathe or wash her hair, she always maintained that she had if I broached the matter, I had sufficient problems without creating a confrontation that was unwinable. Getting her to change her underwear was a major struggle as she also slept in it. She would not co-operate with carers who at one point had been arranged to try and overcome these matters. We had a Consultant Geriatric Doctor who called on us on a fairly regular basis, Social Worker. It was the Social Worker who suggested that I should consider residential care. I own my own home, a modest bungalow, live on my pensions, don't consider myself affluent but am paying nothing for my wifes care. So what you describe does seem hugely at variance with my experience. I think you need to seek advice.