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Update on Richard Hickman


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Sorry you are having such difficult times. As the others said, do get some help for yourself. It's hard enough being a mom and caring for others too, don't forget about you! While I haven't had the difficulties Richard's had, I know there have been times when I was short with my family members and even down right mean. I have also felt badly that they were spending too much time on me, not doing what they needed to do, etc... We all have feelings and we're in it together. You've done a tremendous job already. Hang in there and get all the help and support you can find! :wink: Thoughts are with you.

Carolyn

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Hi Zoe,

This may not be a terribly politically correct reply and I apologise in advance if this offends anyone .... however, it sounds as though you're struggling and I can only say, that at this minute, I feel more for you, than I do Richard.

I think that you need to make it clear to him, that you are here for him, looking after his and your children and making a household function whilst he is away in hospital and dealing with everything that it entails, whilst he is recovering in hospital. It's neither your fault or his, but that's the deal that has been brought to your door .... however, you're not his battering ram either and he needs to know how much his behaviour is upsetting you and the children.

As much as I can sympathise with what Richard is going through, he cannot expect you to deal with his emotional outbursts .... you need to tell him Zoe, that his behaviour is unacceptable and destructive to your day-to-day functioning, if he can apologise to you, then he knows that he's done wrong.

I hope that you will get some help to be able to deal with these outbursts .... Please go and see your GP, as may be, they can offer some sort of counselling or help to deal with this type of situation. I would also speak to some of the medics that are involved with Richard's day to day care and explain to them, what you're going through. At the end of the day, when Richard comes home, you need to have this type of situation in hand.

Wishing you all the very best and if there's anything that I can do, then please feel free to PM me. xx

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Hi Zoe this probably won't help much because it must be so hard for you when he makes the comments however I was vile to Kev I phoned him up and said it was over not to bother visiting again I didn't love him and lots of other nasty stuff to. However 8yrs on we are now married with two kids so try not to take it to heart. My opinion is he feels guiltyike he is holding you back, thats how I felt with Kev anyway. It will be long road but you will both get there in the end and it will make you both stronger. He still loves you. Jess.xxx

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Thank you to everyone who has replied or messaged me.

I think my biggest issue to deal with is how my future has changed. Before Richard was ill we were trying for another baby and I was looking into going to college in preparation to go to uni to do midwifery. I know these things are not out of the question now but they are more out of reach than they were 6 months ago. Our life was all mapped out and then this came along. I am also preparing myself for Luke starting school after christmas and am finding this very hard to deal with - my baby is becoming a big boy.

It is very hard when the person you love changes like this. Rich has never been horrible to me, friends used to comment on how perfect our relationship was and it feels like this has gone.

I spoke to the OT today and told her about some of my issues around richards behaviour (not just things he said but when I was driving I wouldn't pull up at the shop so he pulled the handbrake on and put the gear into neutral while I was driving) and asked them to talk to him as when I do it I am nagging but he listens to them.

Anyway, going to bed cos feel completely drained.

Hopefully tomorrow will bring more happiness.

Thanks again, Zoe

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Hi Zoe,

Bless you and really hope that you're able to get the help that you need and some peace of mind ... interfering whilst you're driving just fills me with absolute horror ... you're not nagging and it sounds as though you need to get these issues with Richard sorted by people that are qualified and paid to deal with it.

Hope that tomorrow is a better day...

Hugs to you ... xx

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Hi Zoe.

I thought I was reading about my own situation when I read your post. It could have been me who had written it.

If I can help as being in a similar situation to yourself please feel free to pm me.

I know what it is like being on the receiving end and it is not nice.

poppy

xx

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Hi Zoe,

Sorry to hear that you are having such a difficult time, it is not right that Richard takes out his frustration on you, I think you are coping remarkably well keeping the home running and looking after the children. I watched a programme on tv the other night about a young man who got brain damaged from a fall, and watched him over the next year as he struggled to recover. His journey seemed remarkably similar to the one made by sufferers of an SAH, he also became very angry and abusive to his family and carers at the rehab he was in, for a time. However he did improve once he had accepted what had happened and accepted that he would never be the person he used to be. I hope that Richard reaches this stage soon :)

Vivien x

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Hi Zoe

So sorry that things seem to have taken a turn for the worse.

Whilst I can sympathise with Richards frustration and anger at what has happened, I agree with karen (H) and Vivien - it's no excuse. You didn't ask for this either - I personally think its harder for the person watching this happen than the person going through it. I wouldn't have liked to watch Paul (hubby) go through what I went through, he's been remarkably strong and extremely patient - just as you have been.

Remember hun, we're always here to support you on your darkest days and your brightest moments.

Sending lots of love to you

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Thank you everyone for your support. They had a chat with Rich yesterday at the hospital and have gone through things he can't do on a home visit (mess with the car, try to stand up unaided etc). I then saw him last night and reiterated it all so hopefully this saturday will be different.

Will update you all again this weekend to see if things have improved.

Thank you again.

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Yesterday seemed to go a bit better than last week. After Rich moaning about me fussing too much I kind of left him a bit - went to do washing up etc leaving him alone with the kids. Last week he said having visitors was too much for him so yesterday we kept it low key and later said he was bored and didn;t want to come home just to sit in a chair. He wants to come home and walk so I then had to explain that that is what the hospital do - coming home is to make things a bit more normal etc. His sister arrived to take him back to hospital and he suddenly became very depressed. He kept saying he wished he was dead and didn't want to come home again until he is ready.

Eartlier in the day when my mom came to see him he said to her that he couldn't handle the noise the kids were making. Not really sure what to do as my kids (espcecially my daughter) only comes with one volume and thats loud.

Having him home for a day is a lot more work than I ever imagined - in a way wonder if it would be easier if he didn't come home again for a while. i feel like everything I do for him is wrong.

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Hi Zoe,

Don't be too down-hearted about the noise your kids make. I can no longer tolerate any noise or busy environments. My little boy was 7 when I got ill & believe me his only volume is LOUD too. He now understands that although I love to hear him being happy I can't tolerate loudness & banging & charging about. It takes time but we have a compromise where he is still a child but knows he needs to be noisy away from where I am and sometimes turn the volume down on his xbox etc.

It does make me feel very guilty, but what is, is and although he forgets sometimes, he does understand that I don't mean to be grumpy, I just really can't tolerate his volume sometimes. Seeing me become ill with head pains since the SAH upaets him very much so he has learnt (along with me) what my limits are. I am sure your children can learn too. Yes, it is unfair, but they love their dad and don't want to make things worse for him. It is sad but they may have to learn compromise many years sooner that they should - I'd like to think (in my own childs case) it wont harm them but perhaps make them more understanding adults?

Parks (without dad there) and friends/grandparents houses will still be noisy childhood zones. I hope this helps. Take care xx

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Had another goal planning meeting today and they have told us that Rich will be home in 6-8 weeks. That is fab news except for the fact that they consider him to be too unsafe to be left alone so will need 24 hour supervision. I never really considered this - thought he would come home and one of his jobs would be to pick the kids up from school but that will not happen and depending on his recovery may never happen.

On the plus side Richard can now walk a very short distance with a tripod stick but they have said that in terms of him not being left alone walking isn't the best thing as it will be harder to contain him.

Richard has gone into some sort of denial about his situation and disability and now spends as much time as possible in bed. He wont go to the dayroom and take part in activities - only gets up for his physio so they have now said he can only lie on his bed at night and between 2 and 3 in the afternoon.

Social Worker is coming to see me next Friday to discuss what we need to do for him in terms of care, etc. Just feels so mean that Richard thought he might not walk and now he can he can't be left alone to go places, etc. It looks unlikely that he will work again or if he does it is a very long way down the line.

What is hardest for me is that before he was ill we were finding things difficult between us and now Richard is completely unaware of the problems we had but I'm not.

If anyone else is in the same position in that they can't be left alone I would be interested to chat as just so worried about things.

Thanks for listening

Zoe

PS - Rich is over the moon though as the end is in sight for him

Edited by zoe1zoe1zoe1
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Hey Zoe

Good news getting Richard home in 6/8wks all steps in the right direction.

Ah! Reality that life doesn’t resume where you left off, for a while I needed 24hr supervision & I hated it, but its good that they say that because I know that in a lot of cases its missed out, that’s what home visits are all about....

That’s good their telling him when its time to lie in bed and when its not, I’m assuming that he’s seeing a phycologist while he’s there....

That’s something to focus on ‘he thought he might not be able to walk’ BUT now he can all be-it with supervision doesn’t mean that going to be always....

Look on your problems before as in the past he cant help being unaware, I remember nothing at all of any of my past, this is a new beginning grab it......

There will be lots of up’s and downs but that’s all part of the recovery, have to say it was far from plain sailing for Ronnie and I hardest maybe that I just had no memories what so ever. But we laugh about it all now, I cringe at things, but that was the Louise that I couldn’t control, not the real me.....

Reading the part about you daughter being loud how old is she are you able to explaine things see if she can turn it down a notch or two.....

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Hi Zoe - oh sweetheart, I really feel for you!

It's great that the hospital think Rich can come home in 6 to 8 weeks, however I worry that that may be a bit premature. Like someone else (sorry, memory's gone!), I saw that programme on the young lad who had sustained a brain injury and I also know a young lad who went through the same thing: they are totally different to how they were before, because they had frontal lobe injuries. This disinhibits them and they don't have insight into their problem, which sounds rather like Rich. I would make sure the hospital don't send Rich home before he's ready. If he's not safe to be left on his own, and you work, then how on earth can you cope? It's not right. If it means he has to go to a sort of home (sorry about the horrible word), then surely that's what has to happen. The fact that he's now refusing to get out of bed and feels the others are "worse" than him shows he has no insight into his difficulties.

Do make sure you let his team know exactly what it's like, although it sounds like you have told them with the car thing etc. Personally, and I'm not a doctor, I cannot believe they'd discharge him while he is still so fragile and it would put such a strain on you all at home.

Re the noise thing, I adore kids but I can't stand screeching and noise any more. The other day I was in the shopping centre with my daughter, and although I was finding it easier than before, all I could hear were kids screeching (which my daughter was tuning out like I used to) and it drove me batty! It made me grumpy and irritable and I am sure having little ones at home when you've had an SAH must be very hard indeed. I take my hat off to you mums of young 'uns!

Sorry to ramble, but I just feel you need to make sure that your needs are taken care of as well as Rich's.

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Hi Zoe,

Your worries and concerns unfortunately don't get any less for you - it must be so difficult to be in this situation. Hopefully though there will be more improvement in Richard's abilities over the next 6-8 weeks - assuming they can help him get motivated to take part in the activities etc during that time. I am not sure how they expect you to give 24 hour supervision - it's a lot to expect of you, perhaps you could start a list of everything that comes into your mind with regards to his care so that you don't forget to mention it all with the Social Worker on Friday. Personally, I would have thought that they ought to build up his return over a few weeks by increasing the days he is at home gradually - full weeks to start with might be quite a drain on your resources and your wellbeing needs taking into consideration too. Keep us updated - take care,

Sarah

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Yesterdays home visit went really well. I took Rich to the pub to see hsi mates which he really enoyed. He has now had 4 cigarettes. Not sure how I feel about it. He says that you only live once and wants to do what he enjoys. However, he still has 2 aneurisms (one of which is large) and smoking doesn't help them. Does anyone else smoke who has had a SAH or still has aneurisms. I was hoping after 6 months he wouldn't be bothered by it.

Still not sure how I feel about him coming home. We had our problems before and his mom has said to my mom that I can just walk away from him and get on with my life with the kids. Not sure what do do - feel I should give it a chance but the thought of him having to have 24 hour supervision worries me. What if he never gets any better, what is he gets out of the house - feel like it is on me and just really scared.

Going to leave it there cos am starting to well up.

Zoe

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Hi Zoe,

It's good to hear yesterday went well, But what a huge load you have on your shoulders here. Do the social services intend to supply people to help with round the clock supervision. Surely they wouldn't expect you to do this by yourself. With regards to the smoking, I do it too. I feel exactly the same cravings as I always did and am ashamed to say I am back to the same quantity now as I was on before my op. It really is difficult to give them up. I also wonder if the people at rehab will rethink their decision to send Richard home as soon as they have said. Surely they will know that would be too much for you. That said, hopefully he will improve enough in the coming months to make coming home easier on you all. We are all behind you, whatever you decide. Best wishes. Take care, and love to the kids.

Sally xxx

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Hi Zoe

Its a huge thing for anyone to have to take on on their own - I'm sure you'll be entitled to some sort of help.

As for the smoking - yep me too - back on the same amount as before the op. I remember trying to stop many times in the first year or so and I always ended up depressed - think it may have been/is pyschosymatic as its the only part I felt was the same me from before and something I was in control of.

Take care of yourself hun

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Had another successful home visit yesterday. Been a busy week - on Monday we had a visit from the OT who made it fairly clear there was little chance of getting a stairlift. Saw Mr Shaw the surgeon on Tuesday. He has offered Richard a coiling on one of the two aneurisms (the one is too small), He pointed out that if Richard leaves it there is a 5% chance it will burst and this will increase year on year. On the basis that he is still young this percentage will be quite high by the time he is 70. If however he has the coiling, he has to realise that he could suffer a stroke which will knock out his right side. Richard has very limited movement in in left leg and none in his left arm so should he lose his right side things would become very difficult for him. He looks to me for advice but I really don't know what to suggest.

On Friday we had the social worker visit. She is going to look into which days Richard could go to Headway and then have a carer the remaining mornings when I am at work. We will have to have a financial assessmet to work out how much we can contribute.

In terms of Richards progress, he has starting walking this week with a tripod stick. He has had a few falls as his left leg is just so weak. At the moment when he steps forward he is having to drag his leg through. He has spent a lot of time in the gym this week though working on his leg muscles so hopefully it will get stronger. I still don't feel to hopeful about his arm. It has been 6.5 months and still there is no feeling in it.

Anyway, we will see what this week brings.

Take care everyone

Zoe

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Hi Zoe....really pleased home visit went well....must be a huge boost for you all :) Wonderful Richard is starting to walk using a tripod stick...well done Richard !! As for what to do about the coiling....so very hard as you say. I would be guided by your Consultant and how Richard feels. Wishing you both well, good luck with the Social worker, hope things get sorted to help you. ..take care love Tina xx

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