Hello! I’m new and I’m sure if I count as a carer or not, but I need support. I look after - or support- my husband, who has vestibular balance dysfunction. He feels sick, dizzy , weak etc etc and he expects me to be with him 24/7. I am a very active person - I’m in u3a and do a
lot. But my partner doesn’t want me to do anything and I am angry, resentful, lonely and isolated. He had made me give up my evening choir, doesn’t like be to see my friends— I could go on. We are both retired and really I don’t know what to do, how to cope. I feel sorry for him but he won’t do anything to help himself and everything is on my shoulders. I just need someone to communicate with, someone to help. Thank you! Leni
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@AnimalLover…..hi, welcome to the forum. You’re in the right place if you ever need to talk and need support. Do you have any help from carers at all? Please don’t give up everything you like, I appreciate how hard it is but you do need some outside contact.
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Thanks Sue. I have no help and things are very hard at the moment. My husband is having a bad patch and that makes it worse for me. Support like this will help. I’m in despair. He won’t accept help from anyone but me. Feeling very sad right now. Going to call it a day — hope to chat tomorrow.
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Hello @AnimalLover Welcome to the forum. I’m so glad you decided to reach out for support. It sounds like you’ve been doing a lot of caring for your husband.
Everything you’re feeling must be overwhelming - sending over some warm wishes and hugs!
Do you feel safe and do you have family/friends you can trust to chat to - I hope there’s someone nearby who you can lean on for support.
There is always someone here to chat to - day or night, because we all have weird sleep patterns 
While he is putting a lot of pressure on you and ‘expectations’ I guess my big question would be if YOU want to? Feeling sorry for him doesn’t mean you have to care for him if you don’t want to. You have choices and rights.
It may be good for you to talk to someone - on this page you’ll find the Carers UK Helpline and also the listening service run by the Samaritans
Helpline and other support | Carers UK.
Perhaps talking with someone can help you clarify a few things, or to think about how you can take some time for yourself, even if its just a few hours.
The most important thing is you’re NOT alone. Lots of us have felt what you feel at one time or another OR all at once. You’re exactly where you need to be for support.
BIG hugs
P.S There is a point where Needs outweigh Wishes - not just your husbands but ALSO yours.
He can’t dictate actions, as wishes, when his needs are more than you are capable of giving. AND your wishes are important, and your needs are important . YOUR health matters. It sounds like you’re beyond the point of being able to meet his needs. Sorry if I’ve mis interpreted things
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@AnimalLover….you’re always welcome.
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This is awful for both of you. It’s a condition I’ve never heard of before, so please excuse me if my comments are inappropriate.
However your husband needs you to be well to care for him, and that means you need to go out and about and see your friends.
Is he getting any support or training to manage the condition?
Is there any hope of improvement, or is it permanent?
Does he accept that it’s unreasonable to stop you doing things you like because he can’t, or is he scared something will happen when he is on his own?
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Im not sure whether your husband is already on any medication for this, but i got diagnosed with labrynthitis (aka vertigo) about 10 years ago which i think is a lesser form of this. I was told that travel sickness tablets help to rebalance everything. I now buy them in bulk under the name Cinnarazine so i always have them to hand.
My vertigo comes and goes so im not living with it full time but it is horrible to try and live with so i do feel for your husband. However its not fair to expect you to give up everything because he feels bad physically and is wallowing. There isnt really anything you can do to help him, so what benefit is there to you stopping the things YOU enjoy?
I believe there is also a particular exercise/set of movements you can perform to help with rebalancing and reduce the dizziness. I would say ok, ill skip my meeting on x day, if you try this for x number of days to see if it helps. Once he starts feeling better he may be happier to entertain himself when you go out.
I do hope you find a solution because you cant live like this, it will pull both of you down
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@AnimalLover welcome to this forum. Like you I joined when caring for my husband just got too much and just being here and getting words of support made me feel less alone, less frightened and stronger in recognising my needs too.
My husband has mental health issues and like you he wants me here 24/7, I am a very sociable person, have many clubs etc like you seemed to enjoy. I fell into the error of giving up my time because I felt guilt, he would tell me ‘we married for better and for worse’ but that is just to place all responsibility for THEIR needs onto you. He must help himself, this is the burden he needs to accept.
You must go back to your choir as I understand that is beneficial socially and therefore for your mental health.
It is hard to draw those boundaries, and this forum helped me find that strength. Please set out your boundaries that you are happy with, you are going to choir, you are seeing friends regularly, you going to u3a etc. Then make it clear to him that you will continue to do this.
You should ask for a carer’s assessment, this will get you things like priority at GPs. It is means tested so you may not get any money, I don’t but it does get your pressure recognised. I have joined Carefree which gives an annual break at hotels for minimal costs, just for the Carer. You can also get Attendance Allowance to get some financial help, this is not means tested.
You can also get Carer support if he can’t do certain things on his own, I can’t get it for my husband’s mental health issues but as your husband has physical needs you may be able to. And unfortunately he just has to accept this. I think you call Adult Social Services. You do count as a carer.
I have found such support here, sometimes sadly knowing I am not the only one who feels just like you, angry, resentful etc. These are valid emotions to have.
Sending you many hugs x
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Welcome @AnimalLover It’s very difficult when the person we care for wants us to be ‘their everything’ and won’t help themselves or accept help from others. It’s exhausting. It sounds as though your husband is resentful because you are well and he isn’t and is metaphorically lashing out and trying to stop you from having a life. It is so easy to give in for a quiet life (I know!) but once you do, it’s a slippery slope to losing your autonomy, self confidence and self esteem. I do hope you will feel able to push back and reclaim some of what you have lost.
Do keep chatting here, everyone is very supportive.
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I know we married “for better or worse”, my own marriage was a very happy one, despite everything life threw at us, but my husband died in his sleep when I was 54, he was 58.
Every marriage will end one day and it’s vital we are capable of living without our partners when the time comes.
We did everything together, worked together, played together. I didn’t have a social life of my own to fall back on, something I really regret now.
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Hi
I don’t know if this is going to one person or everyone— all forums are different. And thanks so much for all the responses!
I have various activities-/ I play the violin an a (very) amateur chamber orchestra in my U3A; I’m in a daytime singing group (though not my choir); I produce and edit a magazine. Among others. We have a 19-year-old cat. (We lost her sister last year.) We have an allotment, though it’s getting very little attention. I can’t invite anyone round— he thinks he has to entertain and won’t/can’t. Where I fall apart is in holiday times, when I’m at a loose end.
My husband’s reply when I want to go out/do something different is a threat to leave because he finds being on his own unbearable. This is because he feels so awful all of the time. I don’t want him to go; I’d be frighteningly on my own so I give in. Would he actually go? Who knows?
His problem has to do with his inner ear. Makes him dizzy, nauseous, etc. Says it affects his eyes. He’s being treated at University College Hospital, London. At the moment he’s having specialised physiotherapy. I liked the physio, but this particular course has made him feel much worse. And he takes meds for this and other conditions.
It’s hard to be sympathetic, but when I see how awful he feels, it’s hard. And I feel total resentment. I’ve just finished a great book called ‘The Selfish Pig’s Guide to Caring.’ Talks about things like feeling like pushing them down the stairs. (Doesn’t advocate it!) At the same time I feel sorry for him. But I would so love to go to the cinema, trips to Scotland, etc.
I need to learn how to tell him these things, but for now I don’t know how. I’m so grateful for this forum. Thanks so much.
Leni
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@AnimalLover Welcome from me too. I can so relate to your post. My husband is 86 and he too hates me going out as -Wives should not go out without husbands’. During Covid, I nearly sank into clinical depression. Basically he is NOT social and my ‘challenge’ is often to work out if he is really feeling ill or just trying to stop me going out.
I stay local but still go out as often as I can. I leave a contact number- I do not leave my mobile switched on. Yes it is very hard as I would love to get involved in some of the evening activities that my Social group do. I have already given up Rotary due to him. I chair a Book Club but he is frankly disruptive and I we call him ‘the senile toddler’.
I think you have to stand firm as you can only continue to care if you own mental wellbeing is looked after. Do you have a local Support for Carers’? If so, then it may be worth making contact as they could have a telephone befriending service . Often these people have been carers themselves.
I now see myself as a ‘professional carer’ as I no longer love or even like my husband. He is very medically non compliant so I do my very best to keep him clean and safe and taking his tablets. If he refuses, I just write it down in the diary.
All I can advise is stand firm. You must not allow yourself due to compassion, to be controlled and manipulated. Please keep posting. We have ‘Roll Call’ where we shared our ups and downs of our day.
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Thank you! It’s great to know that others feel the same way. I don’t love him - resentment overpowers that — but he cooks for me, shops… etc. and I just feel sorry for him sometimes. We’ve just been for a walk in the woods. I like the idea of your challenge. During Covid we walked a lot and then that got less and less as his condition took hold more and more. We do have a local support. Don’t know if they are any good but I’d like to get onto the ‘share a cuppa’ forum. Where you can chat and moan. How do we access the roll call? This is sooo great!
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@AnimalLover I am not the most teccie person on here but I think if you scroll down the headings on the Forum you will see ‘Roll Call’. We share the ups and downs - no judgement but lots of empathy and support. Humor creeps in too - albeit dark.
My husband is much older and has always been controlling. I realise he is a frightened lonely old man with no friends who maybe realises something is very wrong - I am convinced he has Frontotemporal Dementia. I do the best I can as I am sure you do. But it is not OUR job to fix them. We can only take reasonable steps to keep them safe. My husband has ‘mental capacity’ so my days of chasing him round the house with his tablets and eye drops have stopped. It was starting to really affect my mental health so I am working hard on disengaging. Just doing the very best I can but if he refuses to co-operate as in changing his incontinence pads or having a bath, I just write it down in the diary.
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I found it! On the website. Care for a cuppa! I’ve booked for Thurs 27 May 3-4pm.
What I love is that lots of us have the same antipathy towards their partners that we do!
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@AnimalLover…I think you need to call his bluff and keep doing your outside activities. I understand that you feel guilty but you can’t give up your life entirely either.
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@AnimalLover I have been caring since 2013 and my husband is a very difficult old man. He would ‘make a saint spit’ and I am no saint. It is so hard when they cannot or will not help themselves. We do call him ‘Hitler’ and ‘The Senile Toddler’ because his behaviour at my Book Club is a nightmare. Thankfully it has been going 10 years and most are friends a couple even very close friends, so they are supportive. Case of ‘Senile Toddler throwing his toys out of his pram again’, and ignoring him. He has no friends because he is a total chauvinist . My ‘girlie’ friends are generally graduates with one having 2 degrees and 2 more studying for MA’s. The only way he managed to get control over me for so long was by isolating me. We lived a mile from the nearest village before we moved and I did not drive. He resents me doing my hair and makeup which I do before getting paper each day - I get interaction with shop staff and dog walkers. He even says I am making us a target to be broken in to, by dressing up! I honestly think he would make me wear a burka if he could. He made my hairdresser cry by saying that she should not use chemicals on my hair if she did not understand chemistry. Well he has taken almost everything away from me but he is NOT stopping my having my long blond hair or my beloved cats. Neither is negotiable.
Do you have animals? If so you maybe know Selina Kyle is Catwoman? I used to breed and show Norwegian Forest cats. My cats are my world and the only reason I continue to care for ‘Senile Toddler’ is so I can keep my home.
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Cats! Yes, absolutely. Suki is 19. Her twin, Shandy, died last year. We still grieve for her, deeply. They were actually two of triplets but we only had room for 2, so the third one was rehomed with her mum, who was barely a kitten herself. Teenage pregnancy! I’d love to know what became of her. My husband’s saving grace is that he loves and respects animals.
Leni
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@AnimalLover Sadly mine has said that he will 'chase the cats down onto the street and I could never prove it as he would say they got out. I honestly do not know how to deal with that degree of ‘intellectual sophistry’. I think this is just a way of stopping me going out but all it has achieved is making me feel ice cold hatred for him at times.
In fairness I do not think he actually would but he is very doddery so always worried if we get a delivery he might let one out they are all indoor cats. I tend to round up the younger ones and secure in the upstairs bedrooms now when I go out as I found doing ‘Roll Call’ when I got back exhausting. I have always done the day to day care as in grooming and medication.
I used to show under my Haute Catoure prefix and they all have weird names being named after designers and er wine and books! When I stopped breeding I had 20 cats and 4 kittens. I never let any go. Husband used to love them I think. We have no children. He used to enjoy the showing too but as he got older he seemed to resent me chatting to people at shows and just wanted to sit in the Cafe. I now have 14 as have lost a lot of my oldies over the years. Aslan (hautecatoure Machiavelli) has an over active thryoid so it has been a difficult 16 months trying to get the medication correct with regular blood tests. These have been a challenge as he hates having blood taken and I have at times had to leave him so he can calm down and/or be sedated. He is nearly 14 and was born in my arms. My cats got me through Covid as they were the only reason I got up in the morning. They remain my reason for living.
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Luckily mine loves them and agrees that they must be indoor cats. We have no children either. As for caring, when my mum passed 20??) years ago, I asked my dad if he wanted me to come and live with him (in Florida). He was horrified! He said ‘you’re not a nursemaid and you would resent me, and I wouldn’t be able to stand that! Smart man.
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