I have been the full time carer for my husband, severely disabled quadriplegic, for the last 10 years. So 24/7, every day of the year, without family or any other kind of professional support or input, without a break. Providing all physical care, using a hoist for getting up, washing, dressing, toilet, sorting out meals, medical appointments and everything else in between before assisting him back into bed, until the whole thing plays out the next day. Very little life of my own or time to myself, lots of resentment and stress to deal with on a daily basis. So far, so common place (though not acceptable) but reflecting many contributors experience from what I’ve seen on this site. Recently though I’ve realised that aspects of the way I live are not just about the physical demands and stress of caring but have been for many years more serious. I have been subject to emotional and verbal abuse and coercive control. This plays out in many ways, e.g. my husband used the mobile to exert control, ringing me over and over if I don’t answer immediately. He makes me place the shower chair on an exact spot in the shower that that only he knows, moving it back a quarter of an inch, or forward the same, several times until he is satisfied with its position. He drinks heavily, refuses to go to bed even though its late and I’m exhausted and swears at and insults me. Many of the mechanisms supposed to support us as carers have not been useful in addressing this situation. Although it is my statutory right, I have never been able to achieve a carers assessment. Ringing ambulance/paramedic in the area I live in only leads to a recorded voice message re long waiting times and the one occasion my husband really lost it resulting in what I thought would be the involvement of the mental health team came to nothing except a red flag placed on his GP notes with no follow up useful or otherwise.
I have been diagnosed with stage 4 uterine cancer and the anti-cancer drugs I take have resulted in osteopenia, with the weakened bones leading to fractures of two vertebrae in my spine. It is this that has finally led to my husband going into a care home, not any of the usual mechanisms often quoted as part of the process of supporting carers.
So this post is not about what to do about my caring situation-this is resolved. What I am raising here is the lack of any apparent support for carers where their situation has evolved from stressful into abusive. I have noted over the last couple of years how often the district nurse offered my husband a ‘safeguarding’ leaflet with information should he feel he was in an abusive situation, and given the vulnerability of many disabled individuals this is something we should be mindful of. But I have found no information for carers who feel they are in an abusive situation, indeed the notion that disabled individuals can be abusers seems to be an anathema to many. Similarly emerging as I am now from an abusive situation I find little support, with all sympathy directed at my husband who is now in a care home and little acceptance let alone support for an individual just coming out of a long term domestic abuse scenario.
I can not be the only one who has experienced this so I’m posting this so that that others in a similar boat can recognise and call abuse out for what it is. And also to say that abuse of carers by their carees is an issue we need to discuss because as far as I can see it not acknowledged or addressed.
Hi @Annie_2111 I remember that you posted about your situation before - I think about 18 months ago?
Abuse targeting carers is barely acknowledged at all by the authorities. They don’t consider carers vulnerable in the way your husband is but actually carers are, and I came across this situation regularly (as in once or twice a year) when I worked in a carers centre.
Raising the situation with the authorities rarely got anywhere because they knew that the only way to resolve the problem was to ensure that the carer didn’t have to care any more. For a long time, there were no government policies on the subject, but the current legislation - the Care Act 2014 - clarifies the policies and does include carers. Most local authorities now have safeguarding policies that include carers as needing safeguarding. BUT…
During the six years of that new legislation before I took early retirement, those safeguarding policies were often ignored unless and until we were involved and able to point out the new policy. Old habits die hard - including not doing carers assessments, etc. You can guarantee that if the social work team were aware of the abusive behaviour they would avoid doing a carers assessment that would, by its very nature, highlight that issue as damaging your wellbeing and they would then have a legal duty to sort it out.
Public opinion regarding disabled people confers a degree of sainthood on them in that the poor dears are so afflicted they can’t possibly do anything wrong. So stories about that kind of abuse rarely see the light of day because there is “no interest” in it. And then there are the carers themselves, who decide to stay on because of “duty”, or “what will the neighbours think/say?”
But just think about the words I used in the paragraph above. If they were used in a more public setting, there would be accusations of demonising disabled people, rather than an acknowledgement that everyone has their faults, and that when someone has a sudden loss of ability, or shortened life expecatation, they are very likely to lash out - and the person they are most likely to lash out to is the person who is closest to them.
So the subject is avoided.
But you’re absilutely right. It DOES need to be talked about. It DOES need to be acknowledged properly and addressed properly.
@Annie_2111 Thank you for sharing There’s not much I can add to what @Charlesh47 has already said about safeguarding.
I was wondering if you have any friends around you now. I understand how isolated, and abusive the situation was from what you’ve shared and given your treatment you must be feeling even more isolated than you were.
If I may can I suggest a couple of things:
Maggies calming, comforting and helpful and very friendly - I hope there’s one near you but if not give them a call. In addition to support for people going through cancer, they have counsellors and other means of support, including group sessions. Having others to talk to and support is so important for you right now
Our story | Maggie's
these resources could be useful if you need to vent!
As you’ve been a member since 2021 according to your profile, I’m guessing you know about the Cuppas…is that something that you do?
I’m highlighting those few things because I’d hate to think that you’re on your own, trying to navigate through cancer care AND the aftermath of everything you’ve gone through!
I didn’t go through an abusive caring situation but there were a few traumatic situations, and a long period before & after my Dad died when I was really angry, confused…and a LOT of other emotions…and in addition to journalling, and writing I needed to talk to someone…Is that something you could do
Perhaps you could connect with the helpline here to see the support you can receive for you:
Carers UK Helpline service is available Monday to Friday, 9am-6pm on 0808 808 7777 (including bank holidays, with the exception of Easter Monday). emailing email@example.com
Food for thought - BIG hugs
Hugs from me too Annie. I do agree you need support to come to terms to what you have been subjected to. My husband is 84 years old and very controlling and abusive. I have managed to disengage to a degree, but I agree that there is little support available. Everything seems to concentrate on the ‘caree’ and little attention given to how they can often be mega difficult and mentally very draining. I do have a few good close friends.
Like Victoria can only send Cyber Hugs. But you are honestly not alone and I totally agree that this needs to be highlighted and Social Workers and the NHS made aware . I am sorry that you have physical challenges health wise to deal with now too. Please take any support you can to help you through.
Anne, if he is quadriplegic, surely he should be entitled to NHS Continuing Healthcare, free care from the NHS? Has your husband ever had an assessment? Your GP can arrange this. You should not be doing any caring at all with your health challenges.
Oh Annie you need to tell your GP about this. It is just not right. A lady I know nursed her husband who had lung cancer and he was terrible to her. Cruel, abusive and bullying. The GP visited often and he just switched to Mr Nice Guy when he arrived. He was often very rude to nurses though. One day the GP arrived unannounced and the door was ajar as it was boiling hot. He heard him swearing and yelling at his wife and asked her to go and see him. She then opened up to the GP who told her she shouldn’t have to put up with that and he tore him off a strip next time he visited.
Anne, in the past I have suggestive to carers looking after dementia sufferers that they record behaviour on a mobile phone, then show their GP. On a couple of occasions this has led to almost immediate admission to hospital. If you love your husband enough to care for him for so long, at very least he should be civil to you and also give you 2 weeks off a year.
Thanks for your thoughtful and detailed response Charlesh. Yes I posted before when I was living in a particularly nightmarish time because of my husband’s drinking and its taken another 2 years to get here, and as I said in my post because of my medical condition rather than carer support, notwithstanding our statutory rights! I pretty much agreed with every bit of your post. It puts me in mind of the late 1970’s/early 1980’s when working as a midwife and health visitor and it was generally not acknowledged that well-spoken, educated and well-off people could be domestic or child abusers. This was something very much seen as an issue for the poor. Today of course we have much clearer perceptions that domestic abuse can be found in all walks of life but I think the notion of disabled individuals as potential abusers remains one of the last taboos and that will continue unless we discuss our experiences. I know how reluctant I have been/still am to say I’ve been abused-I use euphemisms such as pressured or manipulated. Helena alone is the only consistent post I have read over the last year or two who has used frank language to describe her experience and I have found this reassuring, to know I’m not the only one. So hopefully raising this topic now will help others to know this and possibly even talk about it here as well.
Victoria and Helena, thanks for the hugs, I too have a few close friends who are helping me. I haven’t heard of Maggie’s Victoria but will certainly look at this.
Bowlingbun and Penny thanks for your suggestions, as my husband is in a Care Home now, I don’t need chase up GP appointments or any other services.
Appreciate your support all.
Oh Annie your post made me feel quite tearful. I totally agree the Carees seem to hold all the cards in this kind of situation. I am so sad that you had to go through this. Yes sometimes my posts are probably too frank but I too feel that it needs to be brought into the open. I realise you have health issues but I really hope you can find some happiness now.
I have found the support from other people posting quite literally a life saver. T
Experiencing domestic violence, coercion or abuse is isolating. It takes so much courage to seek help carers are particularly trapped and invisible. The GP is likely to be the safest person to turn to for the first step to freedom but police may be needed to link to safest support in individuals area. We can call social care for advice in my area as well.
Annie your bravery in this post will help others reflect and consider reaching out for support
The bottom line Ula is there is little infrastructure to protect victims of Coercive Control. Yes, it is a ‘crime’. But look at the conviction rate!!! Proving it is very hard. If the caree is older than the person caring then I feel that the ‘balance of probability’ will favour the Caree. Yes the Carer can leave but where can they go? I think Annie is very brave with regard to speaking up and I feel some action needs to be taken - not sure what but it needs to be highlighted and professionals and the police educated. But with a failing and overburdened infrastructure, this is not going to happen in my opinion, unless we really really fight.
Has anyone from Carers tried to contact the media about this? It is a ‘peg’ as the NHS failings are always in the news plus the law was changed and Coercive Control made a crime although proving it and the conviction rates are both horrific. I wonder if any of the Domestic Abuse charities would run with it? Obviously I cannot be involved in my present circumstances but if I do manage to ‘escape’ Hitler for lunch with my prospective MP then I will mention a Minister for Carers and if that ever happens - yes pigs are flying past my window, then this would be someone to lobby. After the PC meeting, we also had the prospective Labour MP chatting - she is a retired GP with an interest in Mental Health Issues so again if she got elected, maybe one to lobby?
A Minister for Carers would be a huge step forward, looking at our overall situation, including rights to respite our health and well being, and housing when the caring stops. NOT treating us as spongers who should be forced to work a second job!
Well at least if I got a chance to have lunch with our prospective MP I could suggest this. I would love to get more involved in local politics and would even consider helping out on an election campaign. Both my grandfathers were Parish and District Councillors. But not reliable and I know it will be very hard to make the lunch date sadly although I was invited.
There’s no minister solely for carers. They’re lumped in to the duties of the Minister for Social Care. As with everything else, an afterthought.
Well we could propose one? Happy to do it locally if I get a chance to both of the potential MP’s for my area. That said, the Minister would be inundated and I would not want their job for all the money in the world . I would suggest they look at the posts here and on Turning Point to get an idea of the’ reality ’ of caring.
as with many things perhaps the first thing would be to connect other Carers via a fresh Thread, and then a cuppa here in Carers UK
I think your experience and Annie’s @Annie_2111 could give others the ‘embrace’ they need to be heard and not feel alone
With a Cuppa and the thread, I’d propose to Carers UK that specific research is done and a report made; campaigning and lobbying needs to start with exposing the realities, numbers and raising voices……the strategist inside me is coming out…but as a Carer first and foremost my heart is with all the others like you and @Annie_2111 that first need to feel heard…
perhaps taking up that banner here on the forum, between the 2 of you, and then hosting a Cuppa could be a start and then asking Michael & the team how you can outline a research & report piece?
@Victoria_1806 Sadly I cannot even consider Zoom right now as my husband is always in the same room. I never really know if I might have to call the GP on a day to day basis and am mega lucky that close friends know this and understand that I may have to back out of things at short notice. I have never used Zoom. Talking with husband in the room is just not an option. I could go upstairs but again if he woke up, he would want to know what I was doing. I cannot take that risk. At the end of the day, I need to not get to the stage where I am forced out of my own home, end up in a council bedsit and fade away because that is what would happen if I lost the cats. Yes he would have to sell the house but feel he is a ‘above the law’ and all he would have to do is not let potential buyers in and he could string it out for years. Also the place is frankly somewhat run down and I honestly think if I was forced out there would be a huge risk of him leaving the ring on and starting a fire. I just cannot take that risk by standing up to him.
I have to play down Carers as he says he does not need one and is only ‘pretending’. I have waspishly pointed out that if this is the case, then he is committing fraud. Seriously I would get so stressed. If there was maybe a thread I would happily help out and offer support but I am not a trained counsellor.
But yes, if Annie is strong enough and she may feel she has does not want to re visit what she has been through, I would happily help as much as I can as I do feel this is far more common and there is so much stigma in going public and so much judgement. Poor little old man - he cannot help being a total
misogynist as he is ill.
No need for Zoom-ing
As always, and I’m sure you do - do only what YOU feel you can and yes, you’re not a counsellor but you’re good at supporting people in the forum, by ‘just’ replying and sharing, that’s already a huge comfort to many people reading…and you’re here
Take heart, dear one. I sense you’re feeling the hurt and impact that @Annie_2111 expressed, and its triggering your own pain. I’m so glad you have your fur-babies to comfort you, and your friend-Penny…let’s not forget you’re also grieving for Pennycat. Be compassionate and kind with yourself, perhaps a good book and some Kylie …just don’t forget WE see you …
thanks for being you, you’re not alone and you don’t need to justify or explain - we’ll meet you where you are
Thanks Victoria - your post means a huge amount. Yes Annie’s mega articulate post did strike a deep chord and I am just pleased she is finally free but very sad with regard to her health issues.
I am quite fragile but will happily offer support as and when I can with regard to this particular issue.