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

All about caring Former carers
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Wow, you’re all amazing, I have to give a special hug to Helena-your frank disclosures over the last years or so have been a huge reassurance to me, I knew I wasn’t alone in being trapped in a difficult place. I also could not zoom etc. Helena for similar reasons to you. A friend recently said to me ‘I knew something was not right because you facetimed with me from your car’

The reason I’m touched by all of your responses (thanks for your kind comments re my post) is that we’ve raised the issue and clearly it’s striking a cord with some of us. Maybe there are others reading this-if so consider chipping in guys. Next steps in my view is not about us as individuals acting, we’re vulnerable-either still in a difficult position or in my case about to enter treatment again. Obviously if a chance came to liaise re this with those who have influence such as MPs etc. we would, but I don’t move in these circles. My hope was in raising this we could see via responses how much of an issue this might be then Carers UK might consider action, e.g. survey? workshops? conferencing? As far as I can see none of the major care lobby groups/care support organisations are discussing this. Not sure how realistic/naive these thoughts are, but it was where my thinking was when I made the post.
Whatever the outcome, I’m very touched by your responses, thanks and I wish each and every one of you well

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@CUK_Membership_Team @Michael_CarersUK To the team and on behalf of the resonance felt, can these experiences be highlighted, raised and researched

Thoughts Carers UK team?

@Annie_2111 I hope Maggies can offer you some support and comfort, they have been great for me and Mum. Take care, big hugs

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Thanks Victoria, I’ll let you know how I get on. To Carers I second Victoria’s urging re research concerning realities, numbers and voices, and in terms of shaping this would be happy to help shape this.

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Yes I third Victoria and Annie’s urging re research. I would also ask them to consider ‘medical non compliance’ as I would guess many who are suffering Carer Abuse are also trying to deal with this too.

Annie thank you! I do feel that I am not good at technology but I do have a good friend Penny who taught me to text and whasapp = both incredibly easy once I plucked up courage to ask for help. I am sure she and other friends would go through Zoom with me but the privacy thing is a huge issue. Husband does not know how involved I am in this Forum and tbh I have been thinking really I need to change my name as I am probably quite easy to identify.

Because I am still being subjected to Carer Abuse I am very limited to what I can do but I do feel very strongly about this. I potentially do have access to an MP but he has to get elected first, and this may be a medium term option . I would REALLY press for a Minister for Carers seperate from NHS/Social Care. I would urge them to spend time on this Forum and Talking Point and see the reality of what Carers go through and how hard it is to get support. More and more will sleep walk into caring. I have 1 friend ex NHS had to retire early due to fibomyalgia in this position. Her 85 year old dad lives 5 miles away but she is expected to collect him from A and E. He had to stay with her for a week as they would not let him out as he lived alone. She is doing more and more for him and is not in good health herself. She is constantly ‘on edge’ if he does not answer the phone . Yes I am going to suggest he gets an alarm and in fairness he has 2 good neighbours who would help in an emergency. There will be many more out there like Cheryl who will help even at the detriment of their own health, out of compassion. I guess Carers will never go on strike.

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Thanks all for your thoughts in this topic.

I just wanted to let you know that on Thursday 23 November we have a special Care for a Cuppa session for Carers Rights Day. In this session we’ll be joined by Laura Bennett (Head of Policy and Public Affairs) who will be presenting some of Carers UK’s latest research findings - there will be opportunities to ask Laura questions and share your ideas and I hope you’ll be able to join us. The session takes place from 2.00-3.30pm on Thursday and you can register to attend here:
www.carersuk.org/cuppa

If you’re not able to join us on Thursday I will ask Laura some of the questions you’ve shared in this topic.

With good wishes

Michael

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Thanks for following up on this @Michael_CarersUK
Unfortunately, I can’t attend. I am happy for my comments and thoughts to be released and used, based on this thread
If others e.g. @selinakylie and @Annie_2111 also endorse the use of their comments, perhaps you could use this thread

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Thanks Michael for following up. I have treatment on Thursday so won’t be able to join you. I cannot endorse the use of my comments on the thread because I don’t know how widely they would be disseminated and who would see them outside of this forum. I have been frank in the posts about my cancer diagnosis and my experience of abuse/views of carer abuse as a wider topic because of the nature of the forum and who is reading the posts. However these personal experiences and information is not something I discuss generally with wider acquaintance. Maybe it would be possible for you to precis the key issues from the thread Michael?

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I know Helena, I had exactly the same problem with privacy and to this day my husband did not even know I was a member. I also know exactly what you mean by continuing to be careful/limited in what you can do but first and foremost you must take care of keeping your own situation as OK as it can be which means only being involved when and in ways you are able to accommodate. You’ve been a tremendous support to so many on this forum Helena and as I’ve already said a great reassurance to me via your posts. We can all see how strongly you feel about the issue and I for one know you will do what you can, when you can-just like me. It has taken me over 2 years between my first post and this. Because of our vulnerability I feel raising the issues and sharing our experience as abused carers has been our significant contribution to date. We will make other inputs if/when we can without further personal hurt but in my view is it is for carer support /lobby groups to take this forward. They have the resources and know-how to do this.
My turn to send a big hug to you Helena -you’re special! LOL

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@Michael_CarersUK

I am not in a position to join you as I am still in an abusive situation and my safety is paramount. However, I am happy for my comments to be used BUT I would prefer you not to use my name as I am probably too easy to identify if anyone did research. Like Annie, I have been very open about the reality of my situation, because I thought this was a private forum. I do realise ( I did deal with the media a lot when I had my company) that for this to find a ‘peg’ in the Nationals that you need people willing to be interviewed but this is probably going to be a while in the future.

Thank you for progressing - I have a feeling there are many more out there who are feeling incredibly lonely and isolated and terrified of not being believed, or offered support if they are. I also feel the Domestic Abuse charities need to be made more aware of Caree Abuse as more and more are going to be facing it with an aging population and a failing and broken NHS

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We’ve started the conversation and that’s really important. I haven’t seen the issue discussed at all in any carer fora. At some point individuals may be willing to speak openly about their experiences but they will be people who have felt safe or separated from abuse for some time and are well-supported by other family/friends. This does not prevent some attempts being made now to get some sense of how much of an issue this may be, e.g. anonymous survey. This would be my question if I were able to join you Thursday Michael. Perhaps you could have that conversation on behalf of all carers?

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Andee a couple of years ago, there was a thread on the Talking Point Forum, it was horrific frankly. Police called but asking the person being abused to leave for their own safety. If they arrested the abuser who was usually an old man, where could they put him? Shortage of Geriatric Care Beds.

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The advantage of this forum is our anonymity. I would not share anything if I had to use my real name on the main forum, but will share it if I send a PM.

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One of the problems of abusive situations is that there are so many emotions involved:

  • Fear of reprisals
  • Fear of being seen as weak or deserving of abuse
  • Reliving events/PTSD
  • Believing that you should endure it
  • Coercive control/gaslighting affecting your perception of what is really happening

And that’s just part of it. There are fears that are associated with leaving a situation like that - monetary, other people/pets, loss of purpose, sense of failure…the list is endless. And it all presses down on victims of abuse, preventing their stepping forward in situations like this.

And that makes it hard to quantify the extent of the problem and to take action to prevent it. And unfortunately there are still people out there who think that domestic abuse is required in a “good” partnership.

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Thanks for your post Charles - spot on! For me, it is the worry of not being believed.
TBH @Charlesh47 Do you think I should change my user name? I have been very open but I do worry that I am using my christian name and with hindsight, should maybe have used a different name? Am I allowed to change my name? I do not really want to, because I think continuity is important and I know Annie mentioned this.

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I believe I’m right in saying that changing your user name updates all the posts to the new name, so there’s continuity once we get used to the name. Selina would be good…Selina Kyle was Catwoman Inthe comics… :rofl:

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Thanks for your further posts in this topic. I’ve discussed this with our Editorial Information Manager and we will consider producing some additional guidance on abuse of carers by the people they are looking after in 2024.

In the meantime, we thought this recent Carers UK animated video on ‘Coping with behaviour that’s challenging’ would be helpful.
Animated information guides for carers (practical and emotional support) | Carers UK

I will also summarise the policy related points that have been posted in this topic (eg on having a Minister for Carers) to put to our Head of Policy and Public Affairs at the Carers Rights Day Care for a Cuppa Zoom session on Thursday.

If you are currently experiencing abuse from the person you are looking after, we would encourage you to speak with your GP about how you are feeling - they may be able to suggest some local support. If you are female, you may also find it helpful to contact the national charity Women’s Aid https://www.womensaid.org.uk/ . If you are male, we would suggest contacting the charity Mankind https://mankind.org.uk/

You may also find it helpful to access the specialist support and advice from the National Domestic Abuse Helpline. They can be telephoned 24/7 on 0808 2000 247 or you can contact them online using email or webchat. You can find information about how to do this via: https://www.nationaldahelpline.org.uk/

Thanks

Michael

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Michael, fear of losing one’s home is a concern. Who should leave, abuser or abused?

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@Michael_CarersUK

Totally agree with BB. Please have a look at the Talking Point Forum. I gave up going on as it was too heartbreaking. If police are called, often they suggest the person in danger leave. I think this is partially down to lack of Geriatric Mental Health Beds. In my case, this is not viable as I would NEVER leave the cats, so I spend most of my life on tip toes trying not to spark husband.

Also I will give examples of my husband’s intellectual sophistry. I think in many if not most cases, the person subjecting the carer to coercive control/domestic abuse is highly intelligent and maninipulative.

My husband has said if I am late back from my early evening drinks, he will leave the keys in the lock. This will mean I cannot get in. If I call the police he will remove the keys before they come and say I am having delusions or mental health issues! This is why I am in pieces if my pre booked taxi is late back. He has done this several years ago when my pilates class at the local school overran, due to the childrens pantomime overunning so we were late starting. I had to beg to be allowed into my own home.

He said he will chase a cat down into the road. My cats are my life - at one time it felt as if they were my only friends and I would quite literally give my life for them. He says quite rightly no one will arrest him as he will say ’ the cat escaped I am so very sorry but I am a little old man and doddery and he/she got past me. How on earth can I deal with that degree of intellectual sophistry.

I called the police back in 2013. The guy wanted to take me to a Refuge - husband was mega drunk and he felt he was no danger to me as he could barely get up off the sofa. He did say if he arrested husband they would not know what to do with him and that it was actually quite hard to kill someone - husband had broken my computer and had been saying things like ‘I want to look into your eyes as you die’ and ‘life imprisonment is not long at my age’. In fairness, he is MUCH frailer now.

If I were to give you any advice with regard to what to include in updated advice it would be to please ask the Caree to avoid isolation. My husband only controlled me for so long because I was totally isolated . I did start making friends back in 2016 as I ended up as Chair of a Book Club. It is hard to find the right people to confide in but I have gradually built up a small circle of 5* friends. The greatest gift those friends have given me is
BELIEVING ME
I can never be articulate enough to express how in many cases, especially with regard to coercive control, how important this is and how very hard it is to prove. Yes it is a crime but the conviction rate is pathetic.

Re GP yes good place to start. But my husband and I are at different Surgeries as my GP told him he was ‘confused’ leading to husband threatening to sue and moving to a different Surgery. My GP told me to write to husband’s Surgery which I have done several times. I have to say they were brilliant and did refer him to the Memory Clinic but he passed the memory test . But due to the 'moderate atrophy of the frontotemporal lobes ’ in the scan, I am absolutely convinced he has frontotemporal dementia - this is one of the hardest forms of dementia to get diagnosed.

I do feel this could get serious column inches in the broadsheets due to the fact that we have an aging population so more and more of us will sleep walk into caring. A crumbling Social Care system despite promises of reform and a failing NHS.

Yes it is a ‘taboo’ subject and I would like to thank Annie for ‘going public’. Sadly I cannot but providing my details are disguised I am happy for comments in this post to be used.

I would also really beg Carers to progress the idea of a Minister for Carers for the reasons listed directly above - more and more of us are going to sleep walk into it. I am trying to help two close friends who are going down that route - one with an elderly father and one with elderly Parents in Law. The sad fact though for anyone with some savings, there is little help available and getting elderly people to accept help such as a cleaner for example, is something both of my friends are struggling with. I will try to support them and direct them here in time.

Thanks for reading Michael if you have got this far.
’

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I feel for you Helena, I really do and I recognise the elements of control you are writing about because I’ve experienced the same, isolation, manipulation and control. You make so many good points-which ones of us did not sleepwalk into caring with strong elements of moral obligation making us vulnerable to manipulation and control. I’m not saying that we didn’t genuinely love and care for our carees in the beginning, I certainly did, but I had no idea how overwhelming and all encompassing the caring scenario would become, with very little practical help available and isolated from all family and friends, hence other sources of support. And in spite of all this you have offered so much support to others and are still doing so. Thank goodness for good friends eh and I’m sending you a virtual hug as well. Just letting you and all on this thread know I’m signing off now for a few days as going for some treatment tomorrow, just in case you wonder about me going quiet. Best of luck to Michael for the cuppa with the policy lead-fingers crossed she may come up with some suggestions.

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Thanks Annie. Please take care and wishing you all the very best. xx