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I'm not sure what is going to happen - Carers UK Forum

I'm not sure what is going to happen

Tell us a bit about yourself here.
I will explain my situation, I am 34 I work full time, my husband is 50 I have two children 15 & 13 from a previous relationship and he has two children 37 & 25

I met my husband 12 years ago we have been happily together, he became Ill 7 years ago firstly with his heart needing aortic valve replacement twice, recovery was slow Ian was behaving strangely I put it down to stress...... One week in a high powered job next week in an operating theatre.
Any way his behaviour was becoming very strange, one evening Ian collapsed he was rushed to hospital and due to his heart being fine the hospital ran brain scans, months later Ian collapsed again and was taken back into hospital where we found out that his brain scan was abnormal and he needed urgent neurological interception.

He has been diagnosed with cortico basal degeneration
It has changed our lives forever
I don't mind being the main earner after a few lifestyle changes it has been fine
I don't mind helping him shower, dress, telling him when to go to bed when to get up making sure he takes his tablets, escorting him everywhere when he wants To go out so he doesn't get lost or run over
It is the mood swings the temper tantrums the abusive language , the way he shouts at me and my children , some of the things he says are very mean
Sometimes he can't even remember what he has said, but now my children are staying in their bedrooms a lot and my eldest try's to stop him shouting at me and then he turns on her, although he is never physically violet sometimes it is very scary.

We have social workers, I have told them I can no longer cope anymore.... They offered me counselling.
He goes to respite for a week at a time, every 4 mths while he is away the kids and me are more relaxed we can listen to music and laugh be silly be ourselves.... And on his return it is very difficult
Ian hates respite although where he goes is beautiful and he does enjoy it when he's there, he sulks and becomes very angry at the thought of going.

So this is why I'm posting on here......
I can't cope with this anymore, I can't keep putting my kids through this, we don't get any support from his family, It has got so bad I have been very depressed myself but pulled myself through it and carried on as normal as much as I could.
I feel bad I worry about what people will say, what people will think but I am not strong enough to continue living like this I'm desperately unhappy, he is unhappy and the kids are unhappy and I don't know what to do, where do I go for help, what will happen to Ian
I don't know how else to explain this situation without sounding completely heartless, he is so vulnerable he wouldn't be able to look after himself but he has driven everyone away with how mean he is to people but I can't keep going through this everyday, what do I do???
What a dreadful situation for you to be in! I think 'head' problems whether 'mental' (eg depression) or brain (ie, neurological) are very, very difficult to contend with. We may know that their behaviour is not within their control, yet feel devastated by it, and its effects on us.

I can't give you any advice on how to cope with someone with such a condition, though there are several carers here who have carees with neurological conditions, so I know they will be here shortly to give you more practical support.

I do think this, though, for what it's worth. I know that you remarried, and your children are not your husband's, but all the same, to my mind, there is no way of avoiding thinking that they simply have to come first in your life. My own personal opinion is that our children should always have 'first call' on us, and steer the choices we make in our life. When they've reached adulthood that's another matter completely, but right now they are still in their early teens, not to mention approaching a time of critical school exams for the their future.

However, just what that 'putting your children first' actually should entail, is far more difficult to arrive at. I could, for example simply say 'You should leave your husband' (the extreme 'solution' for them) but of course it is NOT that simple, far, far from it. And it might not make them happy anyway (what was their relationship with their stepfather like before his condition deterioriated as it has?, as that may give you a direction for you if you make choices now). When your husband is not in one of his 'dark' phases, how is he to deal with, and how does he deal with your children (and you, too, of course)? Can his 'bright times' compensate, or at least, reassure you that when he goes into his 'dark' phase it is NOT a reflection of his true feelings for you, so that might give you the strength to bear with him....

This may be an even more painful question, but what is your husband's prognosis? Thinking 'ahead' may be - hard though I'm sure it will be - essential, in order to come up with a 'road map' for the coming years, at least until your children reach 18.

These are just my initial thoughts from reading your post, and I hope I haven't said anything to upset you even more than you clearly - and so very, very understantably - are at the moment.

I do wish you all the best that is possible within this very, very sad situation - kind regards, Jenny.
PS - forgot to say - what people say and think is utterly irrelevant to you! Only when they've walked in your shoes have they any business (if at all!) 'judging' you for your actions and decisions. Till then, their 'criticism' is worthless!

You will see at the end of each post by Dancing-in-the-rain, a 'motto' that I think fits perfectly - 'What other people think of me is none of my business'. Hear hear!
Hi and welcome.
First off, we won't think you're heartless or that you're not strong enough....look what you've already been through and at the end of the day it doesn't matter what other people think. You and your children are going through this, not them.
Have you talked to your gp and the consultant about his violent mood swings? Possibly they could help with upping/changing his medication.
I should also talk to your social workers again and stress the adverse effect this is having not only on your health, but on your children too.
Also is there any pattern to his mood swings? Anything that could be a trigger for them? A change in the frequency of the bad moods?
You have my sympathy for a very difficult situation.
Degenerative conditions are so very hard Image
Thinking about you after reading your post. It must be an awful position to be in.

As Myrtle said could you talk to the GP or Consultant about medication changes to alleviate his mood swings?

Hope you find a solution soon. You are very brave.
Hi, had to reply to you because I know how you feel. My husband has heart problems,depression and fibromyalgia, also some neurological problems. His mood swings are by far the worst thing I have to cope with.Ive found that by getting support from my local carers centre I can alter how I feel about the situation, as there is nothing I can do to make him change. He has been on antidepressants but refuses counselling.I have three children living at home too, and we all have to stick together and be there for one another. Please confide in your GP and friends,and ask social work if there is a day centre he can attend to give you some respite. My hubby goes to a disability centre one day a week, and I dont know where we would be without it.He loves it, although was reluctant to go at first.Hope this helps. Remember to take care of yourself, and be kind to yourself when you can.Take care x
Just thought - I hope your children's school/s know the situation at home. Stress at home so often translates into 'problems' at school, as children can feel inhibited from showing already stressed parents just how stressed they are too! My son's school was wonderful when his late father was diagnosed with cancer. But if the school doesn't know, they may not realise that any problems in behaviour or performance track back to your husband's illness.
Hi - what an awful situation for you all. I think you need to think about the immediate and longer term future for your family. I also don't think you should be overly concerned about others judging whatever action you decide to take. Sometimes caring can become so difficult and complicated that with the best intentions in the world we need at the very least a lot more help. If your social services dept and the nhs cannot help you more at home and/or with medication, to the point where you all feel better in yourselves to the point of being able to carry on caring for your husband then I think you need to consider some appropriate form of residential care for him. I know that sounds so very blunt and cold. I don't mean it to sound that way because when you're in the middle of a situation like this, it's so full of conflicting emotions. The effect things are having on you and the children are severe from reading your post. It's important for the rest of you that you can some balance back into your lives. As this is a degenerative disease but not life-threatening?? then it'll get more and more difficult for all of you as time moves on. It can take many many heartbreaking moments before we come to a decision we can live with, whatever that decision is. However, and this thought keeps coming back to me as I type, the children need their chance to have as normal and happy life. I do feel for you. Deciding what to do in situations such as this is so very very difficult
Hi Carol,
What a lot you have to contend with, not only being the breadwinner now but also wife, mother, carer and everything else that entails you to live in this situation.
You seem to be coping better than you think you are and often just letting it out can help.
Was thinking, are your children and his children all fully aware of the situation with him? Have you kept them aware of how his illness affects him.
Children are far more aware of how to cope than we are sometimes and this may just help with the anxiety and the frustration.
Respite is crucial for you to have and have you been able when he is in care able to take the children away for a break just the three of you, even say just for the weekend?
Neurological problems are extremely hard to handle and you are doing a fantastic job already.
More people on here will be able to offer more opinions and support than I can however just remember that you and the children are just as important.
Good luck with it all and thoughts and prays are with you all xx
Hi Carol,

I just wanted to echo what some others have already said regarding what other people think. I've found people line up to tell me what to do with my life but I can count the offers of help on the fingers of one hand. Where are his adult children in this situation? It shouldn't be down to you to do this alone.

It is tough having people say unkind or unpleasant things but I keep reminding myself of the good things I do. I think you just have to keep telling yourself what you need to hear if it doesn't come from others, if you see what I mean.

People have different ways of living, different ways of dealing with things but in my life I'm a mum first and everything else takes second place. If you feel (as it seems you do) that the situation is having a negative effect on your children then don't allow anyone to make you feel guilty about putting them first. It's easy to say, I know, but my philosophy now is that people can either help out or butt out. It's their decision.