I live at home with my husband and teenage children. My MS is now at the point where I require a lot of help with my washing, transferring and almost all everyday needs. On several occassions two seperate OT’s have advised us that I should have carers in to help with my needs but when a Social Worker came to the house to advise what was on offer to us he told her to leave as he did not like her attitude. Unfortunately my husband does not give me the care that I need and if he has gone out for several hours or just leaves me in my room for several hours without coming in and I complain he just shouts aggressively until he has me in tears. I would love to be able to tell someone but I am afraid that if I do I will end up being put in a care home and I am only in my early forties so whenever I see my OT or the District Nurse when she comes in to tend to my pressure sores I find myself lying and saying my husband is so good to me and takes care of me well. It has got so bad that my teenagers are now copying the way my husband treats me and show me no respect. Is there any help out there for example, some sort of sheltered housing where I could rent on my own with carers coming in to help me. I don’t have any money as we now live on benefits, but surely there must be something better than this.
I can only imagine how lonely and worried you must be feeling and on an open forum I feel its difficult to respond properly but wanted you to know the cyber network is there.
Would you put up with this treatment if you were fit and well?
District nurses will know if you have pressure sores that something is not right which is why they are asking.They probably feel helpless but arent able to do anything until you raise your concerns.
Please feel free to pm me if you want to but you shouldnt be living this way. I too am 44 with teenagers.
This is a problem that you cannot solve without help. You need to reach out to one of the professionals who are asking you the pertinent questions. Pip is right, they suspect that something is wrong but while ever you lie their hands are tied.
I can understand your fears of being put in a care home but that is a worst case scenario – no, the situation you are in is worst case. Not much is worse than being bullied and ignored.
You are suffering from domestic violence and to flee from this will make you homeless and the responsibility of the local council. Their usual response to this is to place someone in a hostel in the first instance but clearly that is not right for you.
My inclination is that social services are the organization to seek help from. They will be able to liaise with the council and adult services to get you the set up that you require. Financially this is all do-able on benefits so don’t worry about that. (On that note – does your husband claim carers allowance? Fraud methinks!)
PS Don’t worry about lying in the past – this is a very common response from victims of domestic abuse and the OT and District Nurse will not think any the less of you for doing so.
Nobody should have to live like that,now a days.
What is the best way to help you,you must tell someone how bad things have got for you.
Be it social worker or distict nurse,as this is no way to live.
Would a care home be that bad,know you are in your fortys,but you need looking after,and if that is what it takes then so be it.
I wish you well on your journey to find an answer.
And i am sorry that your family cant care for you,and you find your self lying,putting on a brave face.
Please get the help you need,no more lying and pretending that things are ok.
It is hard making big changes in your live,so take it one step at a time,and you will get there.
Please Take Care.
Oh love, I do feel for you.
Some years ago, my hubby was my only carer and it was obvious that seeing to my personal needs was too much for him, as he has arthritis.
Our 2 daughters kept asking him to get outside help in. I used to feel awful for asking him to do things. He sometimes snapped at me, so i struggled on my own and got into difficulties.
I would go on line and find info on carers and get literature, but he threw it in the bin, saying it was his job to look after me.
This went on for a while, until a social worker at my respite place, talked to me about the problems. Again, hubby didn`t want to know.
It took another year before I found the courage to say I was going to get a carer.
Of course this wasn`t greeted well. But I went ahead anyway.
So, last June I had a carer come in 3 times a week, to helo me shower and dress etc.
Then I requested more hours and am now the employer of 3 carers! The system is fabulous, although it does take some brain work to co-ordinate everyone.
What does hubby think now? he loves it…more time for him to do what he wants, or simply just sit and have a coffee without being interrupted by me needing him.
This system is called Direct Payments. You do need a social worker to set it up.
The idea of moving into sheltered housing is something I think about, should I end up on my own.
But would your family really want that for you?
Is there another family member who could talk to them on your behalf, if you are scared to do it yourself?
In your early 40s, this shouldn`t be the only solution to your problems.
I do hope you can find a better answer and stay with your family.
Maybe they don`t realise how much you are hurting.
Sorry if my first post upset you i wrote it when i was angry,not with you or me,but your family.
A lot of good advice on your post so hope you manage to find the answers.
This is where the MS Society can help. That’s what it’s there for. Are you in touch with your local support officer? You can speak to them in confidence and could give you advice on how to get some help.
I don’t know what else to suggest but know that the people on this site are here for you and are very wise with their advice.
You don’t have to live like this.
This is domestic abuse; you are a vulnerable adult and you are being abused by your husband and by your teenage children. This will not get any better and may well get worse unless you take some action.
At first glance you experiencing emotional abuse and also neglect, I don’t know if he is also controlling your finances or being physically or sexually aggressive to you which are also types of abuse.
There is help out there, any of the professionals (district nurses, perhaps your GP?) who come into assist you will be working with organisations who have safeguarding policies and procedures. Their primary aim will be to protect YOU and so will not put you in further danger if you choose to disclose to them. They will work with the local authority to get you to a place of safety.
You may not want to phrase it as ‘abuse’ to the people who come in and look after you, you may just want to enquire about moving onto supported accommodation where your needs might be better met. You may want to speak to your husband about it being ‘better for him and the children’ if you moved into accommodation where you would be looked after, make it look like you are thinking of him. I don’t know how approachable he might be about discussing it.
If you have access to a PC or laptop when he is not around you might want to google ‘domestic abuse + disabled women’, there is a huge range of resources available to you:
The Freephone 24 Hour National Domestic Violence Helpline (run in partnership between Refuge and Women’s Aid is 0808 2000 247
There is also the MSS helpline 0808 800 8000 or email firstname.lastname@example.org.
(Open 9am to 9pm Monday to Friday (except bank holidays))
If you choose to you start the ball rolling by reaching out to one of the professionals who come in to assist you they will put you in contact with one of the domestic violence support agencies who will develop a personal support plan that will take all of you circumstances into account to help you rebuild your life in safety. The agency will work in conjunction with local authority staff to ensure that all of your needs are met and you are protected from further abuse.
Life needn’t be like this love, reach out to those who come in to help you and take that first step to your new and wonderful life.
Please feel free to pm me.
Hello are you ok?
Has anything positive happened since your last post? We are all still here if you need us.
Thanks for all your replies, it really helps to know there are people out there, I feel supported by you all.
I have taken the decission to ask for a social worker to visit the house with a view to having carers in, I am scared what my husband’s reaction will be but I am going to go ahead anyway.
Good for you…is there a time when your husband wont be around for the initial visit or might that fuel the fire as it were?
I really feel for you and your situation and as I said before if you feel the need to pm me please do not hesitate.
Keep up with the strength to make that phone call .No one deserves to be treated as you are .
I think it would be a good idea if he is in when they come because I am going to be totally frank and honest with them that I don’t receive the care I need. Whether or not I will face repercussions when they leave I will just have to wait and see. I will make the call Monday morning and take it from there, if things deteriorate when they have been out I will just have to tell the truth completely about how I am treated and put myself completely in their hands, and what will be will be (so scared right now but I know I am doing the right thing, it was just finding the courage to make the decission).
You deserve so much more. Can an M.S nurse or your doctor refer you for counselling? Talking all your problems through with a professional who can support you as you take immense personal steps for the future. You need to be with people who can support you and guide you as your family are just not coping. Maybe they are scared of what is ahead with your caring and need to hear the truth but also what there unkindness is doing to you. We are here for you but you need professionals helping you more. Be honest with them. The family are abusing you and you deserve love, care and help. Put yourself first. You need to be kind to yourself
Good for you.
Will be thinking about you of you on monday.
Let us know how you are ?
I never mustered up the courage yesterday to contact Social Services.
But you have told us so it shows you are still thinking about it and recognise its something you need to do.
Would it be easier to speak to the district nurse when you are having your dressings done, so the first time of speaking your problems outloud (which is always the hardest thing) is with someone you know.
With the new safeguarding legislation she should tell you that she has a duty to inform people of your situation and get the ball rolling that way with your consent.
Whatever way you decide to tackle your difficulties you need to be in frame of mind that is strong enough to cope,but from what you have said you need to be freeded from what appears to be an abusive way of life. Is going into respite in a place that could really address your pressure sores an option and while there and away from home get the social workers involved in long term planning?
Do you have any friends or family to confide in?
Thinking of you and take care
Oh god, I’m so sorry, I just can’t believe he and you’re children are streating you like this, but you are going to have to be really strong, for you, you can’t go on like this, speak to you’re OT’s and social workers, and get out, there must be some where you can go, without it being a care home, oh god I’m so BL**DY angry, one only get one life, sometimes with MS we feel it’s not the best, but it’s all we’ve got, so to get the best out of it, you have to get out, good luck,and here’s (((((( BIG HUG )))))), Jean x
I have no family besides my husband and children and now I realise he isolated deliberately from my friends a long time ago. Thanks for keeping it touch,it helps to talk.
Just reading your post this morning has me in tears.
Please do not continue to suffer like this any longer. Get the help you need as soon as possible. I know it is easier said than done but getting help can only make your situation better.