I am full time caring for my husband who has chronic pain syndrome, syringomyelia, and ME.
I work to try and provide an income, and have my own battles with depression and PTSD.
For the last year the DWP have made my life miserable regarding their investigation in my claim for Carers, with the threat of prosecution.
I’m exhausted, and I need a break. I’ve not had a break from caring for about 5 years, apart from a few days when he has been hospitalised. My husband refuses to allow me to take a break. He refuses to discuss Respite because it won’t suit him. My mother is 93 and frail, but he won’t entertain the fact that I want to see her, and at some point will need to look after her affairs and arrange/attend her funeral. I’ve not seen her for 3 years. He has become really horrible, calls me terrible names and swears about what I am. He is on opiate pain relief. He has a naturally selfish streak to his character, and I believe the drugs he takes have made this worse. He will not get out of bed except for the toilet. He will not shower. He has poor appetite. Nothing is more important than my care of him above everything and everyone else. If I mention the need for a respite care break, he will rant and swear at me, degrading me. I feel so bad that I have such negative feelings about him nowadays, and even wish he could become poorly and need hospital so that I can get him out of the house, and never take him back. He has an obsession with pain, calls for pain relief the moment he has a twinge, and I have to drop everything and get to his bedside immediately or else I get slagged off. In hospital they can’t provide this exacting level of care that he demands. I think you get a good idea of the dilemma. I don’t wish him harm, I continue to provide the care needed, but I am so unhappy with his outlook, and am questioning if I want to live with him anymore. I work from home, and do not want, or feel I should leave our home. Any practical thoughts welcome x
Hi CK … welcome to the forum.
Others will be along to extend their welcomes and provide guidance on the day to day caring side.
What caught my attention :
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For the last year the DWP have made my life miserable regarding their investigation in my claim for Carers, with the threat of prosecution.
Care to expand a little ?
DWP purge relating to earnings and claiming Carers Allowance ?
Precious few cases have reached the forum … thus limiting out knowledge of this.
What a horrible situation for you.
It sounds as though your husband is hopelessly addicted to drugs, and doesn’t care about you any more. Would that be a fair summary?
I’m not an expert on this sort of thing, but it really does sound like you are a victim of domestic abuse.
Can you film him on your phone next time he is being vile to you? It’s fast becoming the easiest way of proving that what you say is true when dealing with the medical profession.
Why don’t you just say “I’m going to see mum today”? What can he do to stop you?
You are going to feel guilty forever after if you don’t see your mum before she dies, so get over there and explain the situation.
Tell your GP what is happening and ask for counselling to help you find a way out.
Do you own, or rent your home?
Do you have any brothers and sisters?
Does mum own her home?
There is a real purpose behind these questions, will explain more in due course.
Come back to the forum whenever you feel like it, you will always be welcome. We have helped others break free, and should be able to help you too.
Hi, thanks for your encouraging response. Unfortunately my problem is exacerbated by the fact that I live about 10 hours drive away from mother - however I travel, it’s a days travel each way. I’ve lived in north Scotland for over 20 years, and she is in the Midlands. Mum is in a sheltered flat, she doesn’t own it. We own our home. We have been married since 1983. And I recorded a sound file of 13 minutes of verbal abuse just a few days ago. But not sure what I can do with it to help my situation. I wish I could still love him, that we could retire happily for a few years, all the things those approaching 60 wish for. I agree he has undoubtedly and unintentionally become a junkie, fentanyl patches and oramorph are standard drugs in his daily regime. I do have some half-siblings (as I was adopted) so my mum only has me.
I’ve spent most of my life pleasing others, but there’s no pleasing him anymore and I can’t worry my mum with the absolute truth of why I can’t come to see her.
“There’s no pleasing him any more”. I too spent years trying to please others, that was how I was brought up. It was a different world then.
Only now I’m 67 and widowed do I realise that I never EVER put myself first. Mum left me an inheritance after she died, so I now spend it all on holidays!!
If you have a recording, I think you need to take it first to your doctor, to show you what you are subjected to. (Do you go to the same practice as your husband).
Ask Social Services for a Carers Assessment - make sure it’s face to face, away from home. Take your recording and ask for help and support.
Hi Carol Kim,
First of all take on board the fact that no adult legally HAS to care for any other adult, whether it be spouse, parent, adult child or sibling.
I say this to give you a solid base to ‘plant your feet on’.
Secondly consider how you would feel if your elderly mum died without you being able to see her again and weigh that against your husband’s seemingly self -centred demands.
From reading your post it appears that husband is wallowing in his own problems with no consideration of you or your own well -being.
You have to draw some lines.
Get tough. Refuse to listen to verbal abuse. Walk away. If he is in bed, refusing to get up then when he starts in on you, go out of the room. Close the door.
Recognise that you have control here. He is dependent on you and is controlling you with nasty words alone. It seems you are his ‘slave’. Re-gain the upper hand.
What can he do? Shout and call you names? Walk away. Tell him you won’t accept the abuse. Is he going to get out of bed and hit you? If not then taking yourself out of hearing might teach him just who is the important person in his life.
Also take BB’s advice and contact SS for assessments for both of you. Also book train travel (eg) to where you need to go to see Mum. Tell SS he needs care while you are away.
How old are you both? Are you both receiving all benefits you are entitled to and are you accessing all help available?
Looking after someone who is appreciative and much loved is hard enough, looking after an abusive, inconsiderate bully must be soul destroying.
Look out for yourself. You are important too.
Finances? Wills? Joint accounts? Imagine you are going to walk out of the house tomorrow. What will be in place for you? Plan ‘in case’.
Stop asking for ‘permission’ you are never going to get and tell him how it is going to be instead. He’s never going to give you permission to live your life away from serving him. You have to give yourself permission and do what you want/need to do.
You have to find a balance which gives you quality of life while he is looked after. However it does NOT have to be you who does ALL the care. Be brave and grasp the nettle.
Good luck
KR
I second everything Elaine says. You really must start thinking more of yourself and your Mum and make plans to get out of this situation. Accept that your husband is not likely to change, so you must if you want to be able to live the rest of your life in peace. I can understand you not wanting to move from you home, but that is probably the only answer. It’s really tough to give everything up but, once you’ve done it and the legalities are all sorted out you can start to live again. I left my first husband when I was 50 after 30 years of marriage. I had to find a job, somewhere to live, and manage on just what I was earning. It was so hard but, at the end of the day, it was only the material things I missed and the only regrets I had was that I had not done it years earlier. It was like being freed from a prison and I could do exactly what I wanted. Obviously you must make social services aware that there will be someone left on their own who can’t look after themselves, then don’t look back. It’s hard, tough and very scary, but you can do it if you really want to - you owe it to yourself, and your mother. These are obviously only my personal thoughts, so I wish you good luck in whatever you decide to do. But from everything you’ve written I do think some big decisions need to be made soon before you hit breaking point. x
Do NOT move out at the moment.
Do everything possible for you to stay there, and for HIM to be moved out. Surely he has forfeited his right to live there with his behaviour, and if he could not live alone without support, then residential care becomes the only remaining option?
This is why I suggested sharing the recording of his abusive behaviour to the doctor, Social Services, maybe the Police. There is no doubt that this is Domestic Abuse. Might be worth looking for an organisation specifically aimed at those who have been subject to Domestic Abuse?
Please take the excellent advice given above. It sounds to me that you are in abusive relationship. My Mum was in a similar position with my Dad. it broke her in the end and she now has dementia yourself. You don’t have to do all the care. You don’t have to give any if you don’t want to.
You MUST go and visit your Mum.
Contact social services and your GP as suggested above.
And PLEASE start to take care of yourself too.
Hi Caron Kim
Thank you for posting on the forum. I’m sorry to hear that you’ve been having a really tough time in your caring role recently.
In addition to the helpful suggestions from other members, I would also suggest that you contact Refuge and women’s aid, both of which have freephone 24 hour helplines.
Refuge
https://www.refuge.org.uk/get-help-now/
Helpline number: 0808 2000 247
women’s aid
Helpline number: 0808 2000 247
I hope you’ll find these organisations helpful.
Wishing you well
Michael