Living in guilt

[F1951]

Hi everyone, it's a long time since l posted anything, but l'm really struggling at the moment, my husband Peter had a brain stem stroke June 2016, he was in intensive care for a month, followed by 4 months on the stroke ward. Against all medical advice l had him home, he was peg fed, couldn't even sit up, we tried as a family for 3yrs to get him back on his feet, carers came 4 times a day, he had a pubic catheter in situ, but he was feaces incontinent, he wasn't very nice to be and told me daily, l was useless, l became very poorly, first l had my gaul bladder out, then l has polymyalgia, Peter tried to kill himself twice by storing up paracetamol in his pocket,he refused all phisio that we paid for, in the end his care team had an MDM meeting and decided it would be best for both of us if he went into nursing care, so last August he went into Grosvenor manor, a wonderful place, he wasn't happy about it, l visited every other day, on 2 buses, staying all day having lunch with him ,chatting, playing music on my phone, l became his wife again, allthough every day he asked to come home,Then lock down came no visiting, the home shut, down, and it's been a nightmare, he's got a land line phone in his room, he ring me and tell me how much he hates me, he never wants to see me again ,he wants a divorce!! And basically what an awful person l am , lm70 so lve been in lock down on my own, and l'm struggling with anxiety, lve spoken to the manager of care home, and basically she said no matter how much they explain, he needs a lot of care , that l'm unable to give, he's fixated with hate, all very sad lve been married for 48yrs, don't know what to do, sorry for ranting on,

[Oshgosh]

You can rant as much as you want on ths forum..

It’s difficult to know what to suggest.

As a temporary measure could you have his land line.switched Off ?I know it seems harsh,but it might give you some respite from the nasty calls.

What struck me was that you said ‘against all medical advice, we had him home”

It’s really hard when you love some one.you think you can get over come anything. Sadly,some obstacles are unsurmountable.

I’m m sorry I can’t be of any more help to you.please take care of yourself

[F1951 in reply to Oshgosh]

Thankyou Oshgosh, sometimes it's just nice to get things off your chest, yes it was against medical advice, he needs alot of care, but l loved him and thought he might get a bit better, but unfortunately he deteriorated, because he wouldn't do any physio, carers come approximately 2hrs a day, the other 22 hrs it was down to me 7days a week, brought me to my knees in the end, but l tried lve no regrets.

[Oshgosh in reply to F1951]

Make sure you eat properly and look after you.xx

[sassy59]

It’s fine to have a rant F1951 as you and your husband have been through so much since 2016.

Peter is probably struggling to understand why you can no longer visit so he’s not dealing with things very well.

You must take care of yourself of course and I wonder if you would like to join the Positive Wellbeing forum which is just above your post.

You’re doing the right thing and mustn’t forget that. Please take care.

Thinking of you and here for you. Xxxx

[F1951 in reply to sassy59]

Hi sassy 59, lve just joined the positive well being forum, thankyou very much, think living by myself in such surreal times, is difficult enough, without having someone daily telling you what an awful person l am for not looking after them , l done my best can't do anymore, many thanks

[FredaE]

How dreadful for you. The explanations from the care home are not right. They should be explaining to you that just as the stroke has broken his ability to walk and control his bowels it has also broken his ability to be himself and to think and feel like the person he used to be. Or even to think like an adult person at all. It is not your poor husband who hates you - it is the stroke speaking. You do not say how well you got on together but however it was, that part of him died the day he had his stroke and what is left is like a very very small child screaming and shouting I HATE YOU when he can't have what he wants. You can't reason with the child. All you can do is ignore what he says and try to comfort the hurt he is feeling as much as you can. And you can't do that over the phone during lockdown. You are in an awful position after years of trying so hard to do everything to help. There is nothing you can do. . It is time to accept this and do what you can to help to heal yourself mentally and physically. I am sorry if this sounds harsh but I know what you are going through. My husband had spells of being like this and when the spells went he had no memory of feeling like that at all which is how I know it was not him speaking but some horrible primitive little creature buried deep inside him . Be kind to yourself - you deserve it. Get as much help from your family as you can

FredaE

[F1951 in reply to FredaE]

Hi Freda E, thankyou for your reply, that's exactly what my husband is a naughty 3yr old who can't get his own way, he doesn't care how l feel, l'm afraid everything is about him, he's being well cared for, they have all the equipment necessary for him, there's nothing more l can do, lts a very sad situation l wouldn't wish a bad stroke on my worse enemy, it's horrendous, at the time it happened we just wanted him to live against all the odds, looking back we were being cruel, nobody would want to live like that, very sad.

[Hidden]

Hello F1951

I remember your previous posts about your husband Peter. You've had an awful lot on your plate for a long time and you must be at the end of your tether with lockdown to factor in to life too.

It's unspeakably sad that it's come to this after all those years of marriage and it must feel devastating when you've stuck with him and have to experience all this undeserved vitriol from him.

It's very hard to detach yourself from the emotions of it, but please try to keep in mind that Peter now, isn't the Peter you knew. Yet you have continued to give your all to keeping him as safe and well as you could. He's not thinking clearly or cognitively and I hope you don't take all of his complaint and criticism personally.

There sadly isn't much you can do that will change his attitude. It's a part of what he's become because of all that's happened to him.

It's time to stop reproaching yourself, because you have nothing to reproach yourself for.

You say that you are 'ranting on', but actually it's Peter who is having the real rants.

Be at peace with all you have done for him and try to accept that he's no longer the man you once shared your life with in very different circumstances.

But that said, you are very welcome to come and rant here, whenever you feel like it. That's what we are here for!

Please be kind to yourself and take as little notice as you can of what Peter says to you. With very best wishes.

[F1951 in reply to Hidden]

Ah thankyou callendersgal, your all ways there with such wise words, thankyou so much, you start to doubt yourself at times, and wonder wether you could have done more, l beat my self up daily, and being told daily your useless doesn't do to much for your confidence.

[Hidden in reply to F1951]

Words like that do have an effect over time F1951. Just remember that because they were said doesn't make them true! Take good care of yourself and be happy! 🙏

[secrets22]

This is tough one,i dont know how to reply,but i nursed my partner at home for most of the time,and its torn me apart,and i do understand the patients need to be home,home is the place they are familiar with,there is no answer but we do our best.