feeling as if I have lost the man I married

My husband has had two minor strokes so I understand completely what you’re going through. The personality changes are like an exaggeration of any slight traits they had before. I can say on a positive note that improvements can continue up to 5 years after the stroke. Also it’s common for depression to follow a Ste so my husband is on sertraline anti depressants which does seem to help. One of the main problems I find is lethargy not really doing much all day so it’s important to keep up your own interests and friendships . I hope this helps xx

I give all of you who are caring a hug and I cared for my DH for only a fairly short time before he sadly died and that was hard enough I take my hat off to all of you.

to all carers everywhere. At times, I dreaded being told one more time (yet again) what a wonderful job I was doing (I'm sure I never applied for that job?) - just in case it tipped me over the edge.

So many of your situations resonate with me, especially the point that you become more or less invisible as the carer. I don't say if I have a Doctors or Dentist appointment as he will say well I need one as well or the constant request for an ambulance when he doesn't need it. Some days you get up and feel exhausted before you start the day, but you're not allowed to be ill yourself and have to pretend everything is ok. You get to the point where you are too tired to socialise and become reclusive, not wanting to go out or just can't be bothered. Hetty58 you sum up mine and probably a lot of people's situations perfectly in the way your life pans out. I am relieved sometimes if there is a hospital stay as I can chill out, even if just for a little while. I must say though, that it helps to come on here and talk to ladies who are in a similar situation so thank you for letting me ramble on lol

Teddy111 you illustrate perfectly the point I was making about our being allocated superhuman duties well beyond the capacity of one individual. Somehow there are unwritten 'rules':

1) You are the carer so you can't be sick or have a day off.

2) You must be a saint and should feel only love, sympathy and understanding towards the person you care for.

3) You will forget any selfish desires for a life of your own.

4) It's very bad form to (not be cheerful and/or) criticise or argue with the person who's unwell.
etc. etc. etc.

I felt incredibly lonely and scared when coping with a very sick husband and four kids. Everyone I had contact with seemed concerned about him and the children. Had I become invisible/disappeared? It seemed that there was no practical help or support available for his declining mental health as he hadn't asked for it. All focus was on his medical bodily condition.

At one point I insisted that they keep him in hospital for an extra two days while I caught up with sleep (but please don't tell him the reason) and that was my one glorious lucky break!

How was I at that time? Stubborn. Pride prevented me giving up or running away. I worried about what the children would think of me if I failed in any way. In my darkest moments I thought it was only a phase, a year lost of my life. He'd been given a year to live (it turned out to be three). That awful gut-wrenching guilt accompanied those thoughts. It's only human to want to survive, be comfortable and happy but it's just 'not allowed' to think that way when you're a carer, let alone ever voice it. Now, thirty years later, I can.

My Husband has Parkinsons and is slowly eroding in front of me and there is nothing I can do about it.

I have seen him go from a brilliant, strong, independent man, to a shuffling, shaky, anxious one. I feel that I should instinctively know how to help my Hubby, but I really don't and this makes me feel useless. He is pin sharp mentally and still has a wonderfully silly sense of humour, but he has developed the Parkinsons 'mask' and often looks like he is about to start a fight, even when he is having a nice time. The thing that I miss most of all is the way he used to look at me with love and kindness apparent in his eyes.

Reading the posts here I can understand that I am grieving the loss of some of the qualities that made up the man I fell in love with. I am also grieving for the loss of our lifestyle - we travelled a fair bit and I was looking forward to spending our retirement planning lots of trips to new places. When we replaced our passports the last time, Hubby said that when we retired, we would just turn up at the airport with a small bag and get on whatever flight we liked the sound of. I thought that was going to be a great way to spend our retirement That is no longer realistic.

I hated the world when he was diagnosed and hated myself for not knowing how to help him and then for feeling so selfish in thinking that any part of this was about me. But I do know that the man I love is still there in spirit, just that his body is failing him.

Much love to you Canarygirl, and every other person who has shared their story here. xx

Canarygirl.I hope you are able to get some support and comfort from the suggestions that have been offered.

Hetty58,I absolutely agree with you,so many 'carers' do carry on to the very point of self destruction. It sneakily takes over our lives,it has made me a person that I never wanted to be.I was lucky to be optimistic and confident,for most of my life.Not so now.
Last week,I had a sudden purulent cough,waited over w/e got antibiotics and steroids. Had to take him 20 miles to dentist for tooth out,then back to diabetic nurse,GP phoned him on the way home,wanted to see him to say he has underactive thyroid,given Thyroxine,then up to hospital 7 miles away to get blood request form for next week,he has to have bloods done before chemo,next Friday.,Dr on Oncology ward phoned him and said they were giving him a stronger antibiotic and could he collect it from hospital. He took prescription to pharmacy,they gave him a cup of water,he took one of the antibiotics and one Thyroxine. Came back to car,we set off home,he vomitted,he didn't know if he had vomitted the tabs and didn't dare take more. I just felt poorly,defeated and tired out but I am the carer. He has terminal lung cancer that has spread to the bone. We are encarserated.

There's just too much ridiculous pressure in our (twisted) society to quietly cope alone, bravely and selflessly, with the care of another adult, perhaps for decades. It's unnatural, soul-destroying, imprisoning, depressing. Why are we then told what a wonderful job we're doing, how devoted we are etc. etc. when slowly it destroys us, robs us of our own life?

It's impossible to care properly for another person when we feel so very ill ourselves but it's our duty, our marriage vows, our own and family expectations, our pride and portrayal to the outside world at stake.

There is little support or help available so we push ourselves beyond any reasonable human limits in that vital quest to continue coping. We do it to the point of self-destruction.

What should we do? In retrospect (after much consideration) we should contact the appropriate social services, explain clearly that we can cope no longer, leave and save our own lives. It's everyone's job to care for the needy, never one individual's. We can always deal with the guilt that we shouldn't even feel.

How awful for so many of you lovely people coping in such almost impossible situations. It certainly puts my problems into perspective. I don't know if I could, if there was any violence and I became frightened of the person with whom I lived, I would have to walk away. Those in relationships where the love had gone before the illness I could notdo it either. However, if it was a strong marriage and we had really loved each other I would try to do my best until the end. I can understand how to be on your own must seem a release to be you again. You have my admiration for all you do do selflessly each and every day.

I can sympathise with a lot of the ladies comments on here. I've been looking after my husband since we met really when I was 16, I'm now 64 and he started with anxiety attacks. He then had a massive brain tumour in 1993 (just before that I had contemplated leaving him) but then felt guilty and had to cope with the physical after effects of his operation. Then in 2008 the same thing happened but the effects were mental too and now, for the past ten years or so he has had Lewy Body Dementia. Before his medication was sorted out he thought next door were trying to kill him and he tried to escape by throwing his frame through the window and glass door. I was accused of taking other men upstairs (which I wasn't obviously lol) and not caring for him etc. Now he calm but has a terrible memory and talks non-stop unless he is asleep. I feel my life has been wasted and I have been an unwilling carer for all of my life, it's so frustrating when I think what could have been and if I a brutally honest, it will be a relief when I am on my own and I get my life back. I have one daughter with two children of her own to look after so without being mean, she is no support either. He does have a carer who comes in daily for half an hour to help shower him but apart from that nothing else. I'm at the stage now where I don't want to go out or socialise and I'm happy to stay at home with my two dogs, I just wish it was on my own!

Tooyoungtobeagrandma, life is so very precious that I feel it's a crime to waste time in the wrong place. I couldn't and wouldn't stay with a person I no longer loved. I walked away from a wealthy first husband with just a few of my possessions to save my sanity. I was scared but it was fine and everybody (including him) understood.

If you're staying just for financial security and to avoid upsetting the children is it really worth it? There is a different life out there.

Carers UK has a forum similar to this one. Join for support, help, and advice.

Spot on eebeew and when a person loses their inhibitions and empathy they say exactly what they're thinking. Trying to cope with them you begin to doubt yourself and wonder if there's any truth in their rantings. You feel horribly guilty about your reactions and emotions (and being less than perfect, of course) when actually you have the patience of a saint!

Suzyb unfotunately Daddy has the funds to give generously and that helps them forget anything that might seem unpleasant. As they were growing up I was their main carer as well as working ft so kept most of what was going on away from them. As my ds got older I spent much time being referee between him and OH, my son now says it was his fault for being an idiot, but that doesn't excuse my OH hitting him! He has "hidden" money in accounts in their names which I am not supposed to know about. I regret not leaving when children were young as had family that would have helped, but now there is no one. Dont get me wrong I make sure I have a reasonable life, just wish it was with someone who cared

Really we are our brains. We act as we do because we have a brain that works. When it is damaged permanently and does not work then the person we were has gone.

“Our hopes, loves and very existence are just elaborate functions of a complicated mass of grey tissue. Accepting that can be hard...”

www.newscientist.com/article/mg22029450-200-the-benefits-of-realising-youre-just-a-brain/

Takes a bit of getting used to but it makes sense.

Very true, Bluedaisy, there's nothing you can do if they refuse help. There was just one day when I couldn't be at home to prepare, mix and inject the nightly syringe driver. I was at the hospital with our son. A district nurse was sent to do it (as he point blank refused to do it himself) and, when she arrived, he told her to 'F* off!' Of course, he felt unwell later and it was all my fault, apparently.

So many examples of real love in this thread. Love when things get really, really hard. Love for the person who used to be there which sustains continuing care for the person their partner has now become.
True resilience. Real sharp end love. God bless you all.

Tooyoungtobeagrandma
This is so sad. Do your children have any idea of the situation you’re in. Surely they would not blame you if they did.

Totally agree Saggi, my Mother had massive stroke and was left paralysed all down one side etc, she refused physio therapy, counselling and most other ‘help’ and came out with some quite inappropriate things sometimes but she wasn’t interested when I told her not to say these things. You cannot make someone have ‘help’ when they do not think they need it and think they are right as hard as it seems to those around them and that love them.

sorry not to have replied earlier,several hospital appts today. I really can't thank you all for sharing experiences as openly as you have, this seems almost to be something not to be mentioned. It seems almost unreal that a few seconds can change lives in such a dramatic way. I have taken on board all your suggestions and will spend the next few days working out the way forward. Somehow knowing there are other people in similar or sadly far worse situations have helped me see how to cope and that I am a great deal luckier than some of you. My heartfelt thanks to you all and best wishes and thoughts to you all

Reading this type of post fills me with fear. It is so sad that people are experiencing things like this and "losing" a partner they love. In my case Im scared I will be left to care for a man I feel indifferent to and fell out of love with many years ago. Im still in the loveless marriage due to financial circumstances and have put so much of my own money and time into our home it is difficult to find a way out. I know that there is no way I will spend the rest of my days caring for someone who doesn't even notice when im ill. My children will be horrified if I refused to care for him or even that I have thought about it but they will expect me to do it unless im the one needing care then heaven knows who will look after me

So sorry to hear this. It's called "disenfranchised grief". The person is so changed but not dead, so you cannot mourn in the normal way; it's like a long drawn out mourning without end. Mother had a stroke in 1992 and nearly died but was left paralysed, no speech, could not write, no way of communicating. Her emotions became very extreme. One minute weeping, then laughing madly, then furiously angry. I was the but of her tempers, probably due to frustration with her lost life. Stroke Association said they offload to those closest to them. Grandchildren lost their relationship with her.

I do sympathise with you. It is very hard when your husband gets an illness. I have a husband who has been diagnosed with mixed dementia - who luckily is not violent at all and just gets annoyed when I ask him to persevere with his hearing aid. Things that frustrate me are when he doesn't hear me properly, and when he doesn't put things in the right place when he tries to help, so I spend hours looking for things.. He can't do finance at all or work on the computer, which he was really good at and falls asleep a lot in the evening which means I do feel lonely and miss the "old" him. We decided 18 months ago when my DH was diagnosed that we would move to a retirement village where there are lots of activities (inc. theatre, shop, café gym, workshops, snooker, bowling green and lots more). Importantly including a Locksmith to help unlock memories. It also means that there will be support for me in the future as dementia is a progressive disease. We are finally going to move in the next 2 months. So... I would suggest you getting support from a Carers Association in your area to give you a break, as well as consider the excellent suggestion of contacting the Stroke Association and perhaps think of moving to a retirement village if that is possible. The one we ae moving to takes people over 55.
Good luck, I wish you all the best and hope you can get all the help you need.

Hetty58. It's I that wants to thank you Hetty. I hadn't realised exactly what I'd said. I hate it sounding like an excuse, but I know I don't write as fluently when I am having a migraine, or the tail-end of one.

You are so kind! I have to say that I have found in the past when someone disagreed with something I said - or even several times something I had not said but they decided I had! - then they could become really hostile and accusing! The would often sound very horrified, using the old clichés like "I would rather die than say" etc!
So to have you point out what I said and say why it was upsetting, and do so in such a kind and thoughtful way was absolutely lovely! I truly am grateful!

Most importantly, you have actual experience of the real pain and distress that this circumstance brings. Your comparison with the support the man received in the same position is very stark. (I can't think of the right word again) It brings home just how wives have been ill-used and expected to carry a burden that is grossly unreasonable, unfair and inhumane. It is done by playing on their feelings of guilt and that in itself makes it more reprehensible. To force a person into this position merely because they are the female part of the marriage, is horrendously unfair and wrong.

I am so sorry you suffered in this way, Hetty. Yet you remain kind, caring and thoughtful and want to reach out to others and help them in their distress. I have seen many times how those who have suffered themselves are often the most unselfish and kind people towards others and have the deepest understanding of their distress. To be able to write to them with words of help is extremely generous, since it brings back your own pain.

God bless you and all of those who are in a difficult situation whatever it may be. How good it is to have such kind people here who listen and understand.
Love from Elle x ?

Tillybelle, thanks for understanding my reaction to your words and being so kind about it. It stirred up memories of feeling helpless, misunderstood and unsupported at such a difficult time. I don't know if things have changed but I felt that wives were expected to cope with the impossible.

An example of that attitude was the different support my friend received. His wife left him and their four children (for another woman - which he found devastating) and didn't even visit them, just cut ties completely. Nobody was physically or mentally ill but he got the help of a daytime childminder/cleaner from social services as he worked nights. He wasn't expected to cope alone. He was allowed to sleep eight hours. Nobody questioned the arrangement - not even me!