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disabled partner with anxiety - Carers UK Forum

disabled partner with anxiety

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Hi. I really need some help or advise. I have been with my partner for 9 years. When we first started dating (aged 23) I knew that he had muscular dystrophy but it never had an effect on our relationship. He loved to have fun and supported me in my life choices. I'm a keen extreme sports enthusiast and very impulsive. Three years later he was hit by a car while standing on the pavement as a pedestrian and it shattered his left leg and heel. He now suffers from chronic pain and anxiety. Its the anxiety that I cannot cope with. I've tried to deal with it and help him to deal with it in the hope that I would get my partner back. Instead 7 years later there has been little progression. When I try to get him to push his limits he gets cross, accusing me of not understanding or supporting him and he calls me a bully.
From my perspective I am not allowed to drive if he is in the car because he is not in control, I cannot be in any way impulsive because of both the pain and the anxiety. Even a trip to somewhere he has never been, such as another town, will cause him to worry and I've stopped looking forward to things because of the stress involved. I feel like I've lost my independence. I'm totally lost. I try to do thing for myself but we have two children now so I never get the chance to participate in anything regularly. He worries about what will happen if i'm not home with him.
Please, what do i do? I'm reaching breaking point but trying to hold it all together for the boys (aged 2 and 4).

Thank you.
Hi Snoz,

Welcome to the forum.

I don't have experience of caring for a partner with anxiety, but when S first developed epilepsy and IBS, he used to have panic attacks. These were hard to deal with and could suddenly end a trip out or even prevent one happening. He is also unable to cope with busy, crowded and noisy places due to his autism. So I can empathesise with your situation.

Does your partner ever have a sitter/ care worker come so that you can take the children out, knowing that he has someone there to reassure him? I appreciate that it would take time to feel comfortable with someone new.

Others will be along with more direct experience of your situation and also to suggest you have your partner's needs assessed and a carer's assessment for you etc and how to best go about this.

Melly1
Hi. thanks for the reply. His anxiety around me leaving the house is based around what could happen to me and/or the boys. He is more than capable physically of looking after himself at home and can look after the boys for short periods of time. He just wants me there with him. He's not a bad man in any way, i just truly don't think he has any comprehension of what I give up.
In the past few weeks I've had to come to terms with not doing my masters, theres just no way I have the time to dedicate to it), not having any more children (we now know that any of our children will have a 50% chance of inheriting MD) and not having a dog because he's too worried it will knock him over. I know the dog may sound trivial but they have always been a part of my life before we got together and now he's decided we are never having one. It just all makes me over whelmed.
I'm going to get a doctors appointment today. We had a fight last night because he doesn't think i understand anxiety, despite me having dealt with PTSD from an abusive relationship prior to him. I got cross because I have pushed my comfort zones to ensure his life is not affected by what happened but he refuses to push his comfort zones unless it is something that he specifically wants to do.
I'm going to the doctors today. I'm making myself sick with worry. Last night our argument woke our 4 year old and he was crying and frightened and that simply cannot happen again.

Thank you again.
It's clearly not a sustainable situation - you are the 'sink' for all the stress and strain, ie, it's all pouring into you, and if you 'overflow'(as you sound like you are about to do!) there will be a 'catastrophic flood'!

I'm glad you're going to the GP, and maybe getting some counselling for yourself would be good. I suspect that something along the lines of a 'contract' is going to have to be drawn up and signed by both of you - such that you get some freedom yourself, and are not endlessly constricted and curtailed by his anxiety.

His anxiety is clearly the control he exerts over you, and whilst his control is not 'malign' as it would be in an openly abusive relationship, it nevertheless does have a malign effect on you and your children, and is 'de facto' abusive (even if there is no 'mens rea' - ie, guilty intention - on his part!).

Maybe a contract could be in several stages....ie, there exists a 'full T&Cs contract' in which you have the full 50% 'say' in your relationship, as should be the case in all relationships (!)....but you achieve that in stages. If you had a first stage contract (which, nevertheless, implies, unconditionally and unarguably, the full contract!) in which you get, say, 10% freedom from the controlling effect of his anxiety, with 'named activities' that you can undertake - eg, an hour out for lunch on Tuesdays, a trip out with the children on Saturdays (or whatever), so that he little by little gets used to having you out of the house, and yet returning safely!

I do understand safety fears, and I would think you do to - it's the lot of parenthood (Passport to A Lifetime of Terror as I've heard it called!) - that endless fear that 'something bad' will happen if the children are out of your sight. So it is easy to be sympathetic to your partner's state of terror for you and the children. But like all 'obessions' it has to be managed - yes, there are 'rational fears' (eg, you may all be killed in a car crash) that have a percentage probability, but somehow, in the end, we ALL have to live with anxiety. But we have to manage it, or it 'takes over' as it has your partner.

Sorry if all I've said is either totally obvious (!) or completely unachievable given his condition, but clearly you are at the end of your tether and Something Has to Change. You cannot and indeed should not, give up your life to feed his 'irrational' anxieties - it is a 'controlling technique' (though, as I say, not a malignly intended one) and therefore it cannot be tolerated by you.
A good marriage involves give and take, on both sides. I fell in love with a man who owned a steam engine and some motorbikes. I couldn't have one without the other, they made him the man he was. I joined in with everything, I learned to ride a road racing motorbike, and drive a steam roller! I was always a keen needlewoman, we often dined off one side of the dining table, with the sewing machine the other side in the early days! However, we still did lots of others things, and had many shared interests. We built an engine shed for him, and a kitchen extension with my very own sewing room/study above. When we went on holiday, I found all the vintage museums and rallies....and searched yellow pages for the fabric shops! I understand that he has a disability, but that doesn't give him a right to spoil everyone else's lives too. Maybe HE is the one who needs counselling more than you? If you have always had a dog, then he should not stop you. I have never been a dog lover, but DIL lives in my house, plus her Jack Russell. We have lots of baby gates, to control not just the baby, but the dog. He only comes into the lounge or kitchen when supervised by DIL. This is a common sense solution which could work for you too. The dog and I now get on well. When I was stuck at home after operations, he kept me company. When I was learning to walk again, he came with me as company. Maybe a dog is just what your household needs? Something to keep him company when the rest of you are out, something for all the family to love and cuddle and fuss and take for stress relieving walks.
My husband is in his 50s & also has MD & some anxiety issues. He is now at a point that he is unable to go out alone due to his MD but is quite happy to be left alone at home. A lot of his anxiety centres around suitable toilets & falling - he is unable to get up with considerable help. I can understand the dog issue as my husband can fall very easily as he is so unstable & is consequently very concerned about dogs as they are so unpredictable. My husband got some phone counselling from Health in Mind/Rethink which you can self refer to. He also got some relaxation audio downloads which have helped a bit.
When we go out to a new place I research it on Google earth & websites - check on the parking, accessibility, toilets etc. If it is a concert or similar then I email the venue with any questions etc. We also take our own raised toilet seat & a change of clothes. In fact we do everything we can to be prepared & this reduces my husband's anxiety immensley.
I am fortunate that my husband doesn't mind me being out & about & he is pretty secure at home. I always have my phone on so he can call me if required but this has only happened once. My husband knows if he needs me then I will drop everything & come home. We will get a careline at a later date.
Does your husbnad have hobbies or things to keep him busy? My husband is very active in online forums and is making a new career for himself from home as an artist. He also plays regularly in a band which I attend with him. He has his own life & interests even though they are mainly home based.
It is tough - especially with young children. Mine are now older & can be helpful though they bring different challenges. It sounds as if counselling for you both would be a good idea so you can restructure your lives. Incidently - have you been in touch with your local MD Carer Advisor - they are a fount of knowledge.
Firstly i would like to clarify someone with anxiety and not wanting their partnerto leave them is not a controlling or an abuse issue. Intentioned or otherwise. the person is just frightened and does not know how to deal with their irrational fear and loses insight into how stressful that is for their partner.I speak from experience as this is why i have a sitter with me so my husband can go out. Though you are right jenny in saying that maybe councelling or other support is the right way to go to help manage his symptoms. Also medication funnily enough. See what the gp says. As a carer you definately need to be able to go out and do things. See about getting a carers assessment so someone can sit with your husband. This is what i asked for and it helps. If he has pstd from the accident that needs some sort of therapy. Even though you to had ptsd and recovered its important to remember that people can have similar experiences but react differently. As for the masters that would be hard for you to do with a family under normal curcumstances they are challenging and hard to do which is why they are an achievement when they are done. In an ideal world irrelevent of hubbys illness we would have a partner who would eagerly look after the children while we followed our dreams but most of the time that doesnt happen for all sorts of reasons. Maybe get the children to nursery a couple of mornings a week so you can study? Dont give up . As for the dog the other posters are right get one then put up a dog gate so it cant trip up hubby. My husband didnt want another dog so i said ok but now we have one he changed his mind and she helps me mentally. And we have doggy gates up. Get support for him and get him to go to mind he has to build is confidence up again. And you need to get counselling to support you.
Thank you Jade. I'm not the most articulate of people and I understand that what I wrote could enable people to perceive my partner in a negative light. He is not controlling, as you recognise, he is just frightened.
I have contacted the council for a carers assessment but have yet to hear back from them. I was feeling very low when I wrote this and just needed some encouragement and support. I have been to the doctors and she has suggested counselling and meds. We even got a night in London, watching the Cirque De Soleil which has boosted both of us. He made a real effort.
Thank you again for your kind words.
S.
Dont worry i recognised that straight away x And anyway you can moan on here thats what it is for! You sound like you are doing the right things. Just look after yourself too. Get the little ones in a nice nursery they may have funding for that i cant remember as so long my son went to nursery and dont give up that masters. Whats it in?
Sorry, I didn't mean to imply that his behaviour was 'deliberately' or 'intentionally' controlling - but that the IMPACT was 'controlling'.

I would never have accused my mother of being 'deliberately' or 'intentionally' wanting to control my brother, father and me.....but her mental illness meant that she did 'de facto' have a controlling impact on us all. We were never free to live a 'normal' life as we had to 'cater' to my mother's obsessions and paranoia and emotional outbursts.

Perhaps it would be fairer to say that it isn't the mentally ill person who 'controls' the family - it is the 'illness' that is the 'controlling factor'.....

I would say, unequivocally, that it is the amount of EFFORT that a mentally ill person puts in to minimise the impact of their illness on their families (ie, irrespective of whether they succeed!) that is key to the 'morality' of the situation. But I appreciate that that's a contentious point of view!!!! Looking back on my childhood, I have to say that even in retrospect I have no idea if my mother made any effort at all! (but then, she probably wasn't aware of the impact she had on us, or that there was anything 'wrong' with her at all.....yet another moral dilemma and even more contentious!)