Abused by disabled spouse-no-one seems to be discussing this!

All about caring Former carers
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I hope it’s okay to chime in, I have only just found this thread or I would have contributed sooner.

I can only add that I totally relate @Annie_2111 and @selinakylie with your situations, being in a similar one myself.

I have been a carer for my husband for over 35 years and during that time was also a carer to my Mum who had COPD and mixed dementia. Four years of that was spent living between two houses caring for 2 people plus going out to work. I was subsequently diagnosed with a progressive neurological condition which has made life (and caring) challenging! When Mum died 4 years ago, I tried returning to paid employment but only lasted a month before I totally shut down both physically and mentally, and haven’t worked (outside the home) since. Then Covid came along in 2020 and my husband developed an acute phobia of catching it. Consequently, I didn’t leave the house or speak to anyone face to face for the best part of 2 years. Even now, I still have to get our shopping delivered; f2f contact with others is carefully controlled and as for being able to do anything spontaneously, forget it. Trips out have to be agreed and arranged like a military operation… and any pre-agreed journey out for more than a couple of hours can very quickly be cancelled at a moment’s notice.

Yes of course I could announce that I am “going out for X number of hours and will be back at X time…” but honestly, the grief and fall-out from actually doing that (assuming I could pluck up the courage in the first place!) outweighs and nullifies the benefits of doing so.

So, desperate for support however tenuous, for exactly these types of issues, I did make some brief posts on the Women’s Aid Forum which I thought might be helpful, as they have both a dedicated area for Carers and the over 50’s. However, lovely though the ladies there are, I very quickly discovered that they have very little (any!?) experience of coercive control combined with caring. The overwhelming advice was to “put myself first and just leave”… yeh, like that’s actually possible! Unless someone has been in this very unique situation themselves, they can’t possibly grasp what it is like for a Carer living this 24/7.

Impossibly difficult though our lives may be, there is still an inherent feeling of duty to continue in the caring role, coupled with the difficulties surrounding the complexities of who (carer/caree) should leave the property; legal advice surrounding same; practical and emotional support (non-existent unless you can afford private therapy). No wonder it is ‘easier’ for carers to just stay, put up and shut up.

A dedicated Minister for Carers sounds like an excellent idea, not just lumped in with the duties of Minister for Social Care as @Charles47 mentioned. But I have doubts as to whether this will ever happen. I guess if this were a dedicated position, that would mean the Govt would actually have to do something about the issue. Far easier to sweep the issues under the carpet and pretend they don’t exist.

Like you, I would be happy for my comments to be used anonymously but nothing more for the moment. But I would welcome contact on the forum in relation to this issue, either here or in a dedicated area for this particular topic.

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Articles about stress say you must work out what is stressing you, and remove the cause of that stress. Impossible if it’s a loved relative!

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Hi Eastendgirl, of course you’re welcome to join the thread. The reason I posted originally was because, like you, I found that other fora just didn’t ‘get it’, that is didn’t get the special difficulties of dealing with coercive control, in my case an alcoholic spouse, and the caring role. I was pretty certain I couldn’t be the only one so this is the beginning of trying to collect experiences and offer support, first and foremost. But also, hopefully, persuade carer support organisations that we need to try to get a handle on how big an issue this is to enable us to let the support agencies see that more needs to be done to support those in this position (like you I think a minister for carers is not going to happen anytime soon). So thanks for speaking up and sharing your story, its an important part of making outside agencies become aware of carer abuse as an issue (and we can do this on this forum and remain anonymous). Also, now you’ve joined the conversation I hope you’ll get some comfort from being able to talk about your problems in a safe space with people who really do understand just what a tough call it is. I felt for you very much on reading your post because so much of what you said reflected what my life has been like, socially isolated, controlled to the extent that I didn’t have the focus or energy to battle the control, be it take time out, challenge the petty rules at home or whatever. Its a strange combination of obligation, like you I’ve been married for 36 years with very catholic expectations re ‘better or worse’, but also practical constraints. I know without a doubt I would have left my husband after one of his drunken rages years ago except I couldn’t walk out on an individual who needed help with every physical aspect of their life. And finally, I’m just beginning to realise, as one gets more and more tired, its all one can to do to keep putting a foot in front of another, certainly my ability to problem solve became skewed or disappeared. So dear Eastendgirl I’m sending you a big hug and a big welcome to our chat and hope that having somewhere to vent helps a little bit xxx

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Also I should have said you might find other sources of help on the forum, e.g. the free advice line or meeting with others for a cuppa. I couldn’t do the latter myself as it caused to much agro with my husband, but reading others posts and advice was lifeline over the last 3 years!

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Eastendgirl

I echo what @Annie_2111 has said, you ,have taken a huge step by reaching out.

I take your point re a Minister for Carers. But there are so many people out there who have slept walked into caring, and they all have votes. I do sincerely hope that Carers will progress this. I am happy to lobby my MP when the time comes. I am also convinced this could get ‘column inches’ in the broadsheets. I think part of the issue is that the broadsheets will want to profile real people going through this, and I am just way too frightened of my husband to do this. But it is a new ‘peg’ and I do think it is worth pursuing as I am convinced there must be a huge number of carers in similar positions. The press has been full of Careers being abused but here is the other side of the story…

My husband drank a litre of vodka a day at his worst and I am pretty sure it has affected his brain - the scan showed moderate atrophy of the frontotemporal lobes which does fit in with his behaviour.

I can only suggest you join the Roll Call and/or lurk if you want to for a while. I have found this Forum a great help. It is not easy to make new friends at our age but I have been very lucky as I have my Book Club although husband a nightmare and he has to come too. I also am an Admin of a Social group. It is very hard for me to get out and relax, and to give one example, I put the younger cats in the bedroom because I am so terrified of husband letting them out - they are all indoor pedigrees with no road sense. I always do a head count when I get back. I am also ‘on edge’ in case he uses the electric ring and leaves it on or puts something on and forgets. But hey, he has ‘mental capacity’. I honestly think ‘they’ will keep saying this until he burns the house down. Sorry if I sound bitter.

I am lucky as people are starting to see my husband for what he is. His outbursts in public are being witnessed and in law, there is something called ‘balance of probability’. He is quite frail but still substantially heavier than me. Leaving is not sadly an option as I would never leave the cats and at nearly 62 just would not survive in emergency accomodation.

All I can do is send you both hugs and just PRAY that someone at Carers reads our posts and progresses this.

I also personally think the whole ‘mental capacity’ needs to be looked at too. I honestly do not think my husband could live alone even with Carers as he is so very deaf and so very forgetful.

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Thank you both @Annie_2111 and @selinakylie for the welcome, and for starting this conversation. I had looked for years and until I came across your thread, had never found anything remotely similar anywhere else.

As you have said, there is plenty written about the abuse of Carees, safeguarding, the laws around that (and rightly so), but absolutely nothing about the covert abuse of Carers. I agree that even the idea a disabled caree could be capable of covertly and coercively abusing their carer, is just not something most people who hadn’t experienced that situation for themselves, would even entertain as a possibility.

Not only do Carers need a dedicated Minister for Carers, but I feel there should also be either a dedicated organisation (or an arm of an existing organisation) specifically focused on this area. Whilst I appreciate the sentiments behind suggestions to contact organisations such as Women’s Aid, or the National Domestic Abuse helplines, the reality is that they do not have an in-depth knowledge or understanding of this issue; seeing it only in terms of the wider umbrella of domestic abuse, rather than that specifically experienced by Carers.

I totally get the reluctance to use the ‘abuse’ word, I have referred to it as emotionally manipulative behaviour. Somehow if there isn’t actual physical abuse, using that word doesn’t feel quite right (even though that’s what it is!) By it’s very nature of being hidden, covert coercive control is difficult for most people to understand and almost impossible to prove, hence the incredibly low conviction rates for this relatively new crime.

Just because a person is now out of such a situation, it doesn’t mean that the effects of it aren’t damaging, so Annie I do hope your treatment goes well and that you can find support for dealing with what you have been through. I am only guessing, but will surmise that there are a lot of mixed feelings for you; relief that your husband is getting the care he needs but is no longer able to subject you to such awful behaviour, coupled with the knowledge that you are only free of being trapped by your situation because of your own health issues and not because anybody noticed and offered help and support when you needed it. My heart goes out to you.

I am sorry that you are still stuck in your situation Helena, as am I. Like you my H doesn’t know about my frequenting internet forums and all hell would break loose if he were to find out that I’d actually posted about my situation, even in the briefest of terms. Having always prided myself on being an honest and open person, I feel as though I have been reduced to behaving in an dishonest and underhand way, simply to be able to access support. I completely understand why you feel unable to leave, and especially in regard to the welfare of your beloved cats.

Thinking of you both and sending hugs.
EEG xx

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I was glad to see your post today.
I am in a similar situation and my disabled husband does exactly the same things you describe.phoning endlessly when I am in or out the house and getting me moving things ,like a plate or his sheet an inch to the right inch to the left etc toll in exactly the right place and then he changes it over and over.Also swears and yells abuseas loud as Pavarotti .when carers come or nurses etc he has an amazing polite and charming front

Like you I think carer abuse is not raised as it is hidden away under the guise of the caree being ill etc
Hope you are managing things and have some support xx

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Fleur can only send cyber hugs.

I think there are far more of us than people realise. I hate being ‘controlled’ by my husband. It is also hard to know if he really needs to phone the Surgery, for example, or it is just a way to stop me getting out. He asks me to leave details of where I am so he can contact me. This means I am always ‘on edge’ when I see friends and I have to stay local so I can get back quickly.

Do you have any support? We have Roll Call where we share the ups and downs of caring. Why not join us? No judgement and lots of empathy and support.

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Wow, i am so grateful to have found this thread and for everyone who has posted here to highlight the plight of abused carers. It is under the radar of wider public domain because to understand it is to face it and deal with it as a nation. Our low investment into health and social care over decades means that issues like this are overlooked because there is no infrastructure to support situations where disabled and carer are no longer living safe and healthy lives together. Under the carpet it goes!

My situation chimes a bit; husband has had progressive MS for last 13 years, married for 35 years. He has become an alcholic and is now addicted to cannabis (he likes to tell me its not addictive but if you saw him go without, you would see withdrawal symptoms and behaviour). He’s become misogynistic and sexist, deeply resents me having any social life even to the point of me simply enjoying time with our adult kids. I am privileged enough to have a home where we can both live separately and he doesnt always know what im doing or when im out sometimes. Like others have posted, he goes into a personality transplant when with any outside professionals and is perfectly reasonable and pleasant. The rest of the time it is constant resentment and criticism. I do all i can to look after ‘me’ and our kids help, otherwise i think i would be in a very much worse state than i am now. Current issue is the drinking and weed. He tries to negotiate terms to increase ‘allowance’ with me as he can’t physically access it himself. This allows his emotional manipulation of me and leads to constant rows; He’s ill without the alcohol and weed and is ill if he goes to excess, so its a constant battle to keep it balanced and a bit of a nightmare for all ‘happy’ special occasions such as birthdays, Christmas etc. He likes to tell everyone that i treat him like a child and spoil his fun and that his home is his prison…all my fault, all the time.
Thank you all for sharing and making me feel less isolated in this. Massive respect, love and hugs to all of you dealing with this and worse x

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@Jo_191212 Hugs from me. It is amazing how the worst traits seem to become more prevalent as they get older? My husband actually thinks 'wives should not go out without husband’s. At the Book Club dinner he told my friend Juliette I was ‘out all the time’. I wish!!!

How old is your husband? Does he have many co morbidities apart from MS? I am glad you have some support. So much of your post reminds me of my husband - spoiling social events. Playing up at the Book Club dinner. Being so difficult at the restaurant I stopped inviting friends to join us for my birthday lunch. We call him ‘The Senile Toddler’ because that is how he behaves!

For years my husband was ok in public but lasts 3 years this has changed and friends are noticing. I am convinced he has some form of dementia probably Frontotemporal Dementia but getting a diagnosis from the NHS is difficult and I totally agree it is mainly down to cost.

We do have ‘Roll Call’ where we share our ups and downs of being a Carer. We do have some humor too albeit very dark coming through in the posts. Been a life saver at times. I am truly sorry you have to go through this too. There are a lot of us out there who are bullied by the people we are trying to care for and yes, we deserve recognition and support too. Rather than being used as ‘cannot fodder’. In my case, I no longer want to care but have to as only way I can keep my home as he has threatened divorce if I try to get him out into a home. I am just hoping that his health will go downhill and he will go into hospital and then maybe I can work at not having him back. I do feel he is a danger to himself especially with regard to cooking. Even going out it has been noted not just by me, that he does not look when crossing the road becoming a danger not just to himself but to others too. He did go through a stage of getting out of taxis when moving but thankfully giving HIM the money to pay has helped stop this.

I just wish someone would take notice of how many of us seem to be struggling. There are many others on the Dementia Forum suffering mental and at times physical abuse.

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@selinakylie thank you for your kind and thoughtful words. My husband is 69 and i suspect is on the autistic spectrum alingside having MS. The dementia possibility has crossed my mind as he has such mood swings and new unpleasant personality traits. However, whilst he can be forgetful and confused he can switch back to being perfectly lucid and polite when meeting health care professionals.
I cant see him ever managing a care home. He has threatened suicide if it came to that.

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I get threatened with divorce and '‘losing my home and having to have cats pts’ if he had to go into a home. So you have all my sympathy. Would counselling help you explore options? Your husband could go on for many years. Sadly his behaviour is likely to get worse as he gets older.

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Ive had counselling and it did help get over a past unsettled period when we first moved to separate bedrooms. On the whole the separate rooms has been a life changer for me. Even if i spend all day fetching and carrying, at least i have my own space every evening.

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@Jo_191212 For me it is being able to get out with my SB group and my Book Club although he comes with me to the latter. It makes me feel like a person rather than ‘Little Drudge’. But he resents this as he thinks ‘Wives should not go out without husbands’. My friends really do not like him and several at the Book Club find it hard to deal with his ‘outbursts’ and how he treats me as I Chair it. But even getting out extracts a high price as I now put the younger cats upstairs as he did say several times that he would chase them out into the Street - we live on a Main Road and they are indoor cats. He said I could never prove he did this as he would say that ‘the cat got past him’. The hatred I feel for him when he said that was immense = pure white hate. Very hard to feel compassion and sympathy for him but I do realise he is a very isolated unhappy old man with no friends. Even on his Forum he falls out with other posters constantly. All we can both do is take it ‘day by day’. But like you I feel angry that we get so little support and help and acknowledgement.

I really would NOT be responsible for my actions if he EVER let one of the cats out. But the way round it now is to get them all upstairs as he does not usually move much from his recliner chair.

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