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Hi from RIORITA


RIORITA
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Good morning everyone. I hope no one will mind my joining this forum as I haven`t had a stroke (yet!) but my husband has had an acute ischaemic  one and I feel as "at sea" as he does at the moment. We were fortunate that we knew straight the way what was happening and rang for an ambulance and then it was all systems go.

 

The emergency services were wonderful as was the team at Leicester`s  new stroke unit but everyone , including doctors at our medical practice, have been shocked that he was sent home later the same day.

 

I realised pretty quickly that we would have to work things out for ourselves, I devised some simple, light weight exercises and we have progressed from doing nursery rhymes to him reading one page of "Paddington Bear to me each day, and if a stranger met him today they would be hard pressed to know what happened just over two weeks ago.

 

I massage his legs, neck and arm each day and encourage him to take short naps throughout the day as his major complaint is of overwhelming tiredness which I am sure many of you have encountered yourself. I would appreciate any other suggestion of things I can do to help him move forward, things which you may have tried for yourself.

 

I do understand his frustrations but as his supportive carer it is upsetting when he becomes angry or shouts, so unlike his normal self who is a mild mannered person. 

 

Just back from seeing his GP who is going to refer him for physio because though he is doing very well, when tired he drags his right leg and also he has strange sensations in his foot . Already in contact with a speech therapist who is telephoning us again later today.

 

Thank you for reading my own personal experience to date and I hope I will be allowed to stay amongst you all.

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Hi Riorita

 

warm welcome to the site so glad you found us ofcourse your welcome....

 

hope to hear more from you, I had right side weakness and had to see a speech theaipist when in the rehab hospital take a lot of hard work but without our 'carers' where would we be!

 

Please try and find time for yourself though...

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Hi Rio Rita,

 

We can be hard work, I knew I was getting better after my SAH when hubby moaned at me !!

 

He is feeling low at the moment but no need to take it out on you  xx  Sure he doesn't mean it !!

 

Has he been out for a coffee as I do not remember much but my hubby took me out a lot.  I still ask but not so forward about it anymore  Grrrr lol

 

Good luck and try getting him out more  xxxxx 

 

My Dad started having them at 86 and we thought he had the hump !!!  He moaned at his tea didn't taste right and now I know what he went through as I get weird tastes and smells also !!

Good Luck

 

Winb143 xxxxxx singing helped me but was awful for others lol

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Hi Riorita,

 

Welcome to BTG!  Of course, you are very welcome! You are still in very early days yet.  Many of us had to be re-taught how to do things in recovery.  it is important that you keep talking to him, even though you might feel you are talking to yourself at times.  It is amazing how much the brain takes in even when you think it isn't listening or isn't understanding.

 

Keep doing the things you are doing and when he gets angry or upset, just back off a bit and give him the time and space he needs to calm down.  Don't forget, you are not dealing with the same rationale at the moment, so you need to adjust, as he does.  Brain injuries take time to heal and there isn't any set time limit for it to happen, it will do it in its own time.  Try reading short stories from the newspapers too, to see if they trigger any reaction..

 

Carers need support too, and we can provide some of that on here.  We can't give medical advice as we are not doctors, but many people have experienced the journey you are both now on.

 

One thing you can do is to keep a diary of your husband's progress.  This type of thing, if you don't note it down, can make it look as though little or no progress is being made.  If you do write it down, then over time you will see that big strides are being made.  It's good to read back through the diary and remind yourself that there is progress, there is hope, and there is aspiration.

 

If you have a look at some of the threads on this site you will see some of the stories that have preceded yours.

 

When you have appointments with health professionals, plan for them.  Write down any questions you want answering and take them with you to the appointment.  As soon as you get the chance, write down the answers so you don't forget them!

 

Any time you want to ask for advice or just have a rant - well that's what we are here for!  Please keep a note of your thread 'Hi from Riorita' so you can enter it in the search box if it isn't immediately visible.

 

Once again, welcome to the group,

 

Best wishes,

Macca

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Thank you everyone for your lovely replies. It seems to be ME who has gone into melt down this week and I am probably one of the least emotional people you could ever imagine.  Today has been a good day because my husband got to meet a lovely man who had a stroke four years ago and they were able to discuss all that has been going on.

 

After introducing ourselves to him over a coffee I left them to it and went to our local library, one of my favourite places so why did I have to hold back the tears when a group of ladies were chatting and having a good laugh and I wished I was with them!  On arriving back home I finally ended up in tears when I had to tell my husband that I miss my late sister Jenny so very much, she would have given me so much support and love at this difficult time.

 

Having worked in care homes I am lucky enough to have had experience of mood swings etc. affecting people who have had strokes but of course it is a totally different situation if it is your own loved one who is in this situation. My husband was a fit energetic fellow, doing volunteer work on post was jets and just getting into racing his mini stock car when he had his stroke.

 

It has been  tremendous shock to everyone, never smoked in his life and an odd one pint each week when playing chess with his mate and the week before we were walking the Brandon Marshes, life indeed seems very unfair.

 

Thank you for your advice Macca, I am very organised and have kept written notes from the beginning, and we have now graduated to reading bits of poetry to each other, I expect that we are lucky that we have always sang little ditties to each other  and read bits of news from news papers and magazines so there is no deviation from the norm there.

 

Not all bad news, not only does he have an appointment now for a twenty four hour heart monitor at our local heart hospital but today he has received an appointment to see his consultant again on July 20th. Questions to ask are already being written down in anticipation of this!

 

Winb, we have been out to one or two favourite coffee shops which certainly lifts our spirits. He can also now walk the mile to the center of our village which is quite some going in that it is not three weeks yet since the traumatic event but of course we have always been walkers.

 

Louise, good news that you are doing well, we had a lovely lady speech therapist to see him yesterday and she said he was the best patient she had ever seen in making such good progress after such a short time and she was able to give us both some tips on what to concentrate on and it was a boost to both our morale to know that we had been doing the right things.

 

Thank you for pointing me in the right direction to the carers topic which I had managed to miss Casey, I am not the best on a computer and especially  going on forums but I am going to do my best for you all! 

 

Many thanks to you all for your replies RIO xx

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Riorita, 

I would like to repay your compliment,

I think you are a wonderful women. 

It's one thing to be the person going through trauma, as you know exactly how you feel and what you want. But to be the person standing by watching it happen, especially to a loved one, is extremely difficult. 

But I think you are doing so wonderfully well. Please keep updating us xx 

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Riorita

 

Completely agree with Sophie - someone once asked me if I'd rather the be the person going through it or the person watching.  I said the person going through it as it has to be so much harder for the person watching.  This was proved for me when my hubby nearly died two years ago in a motorcycle accident and I realised how hard it was for him watching me go through this.

 

You're amazing - as are all the carers on here xx

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I am very touched by your replies Sophie and Skippy. It is indeed very difficult watching Jeff going through all this and though I am trying my very best to help him through it all it still feels as though it is not enough. One thing that I do know is that it will make us both all the stronger for it. xx

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I'd like to ditto the replies too...  it is I think far better going though it, than being the one watching on....I know you feel your not doing enough but I think you are doing fine cut yourself some slack...

 

I owe everything to my husband Ronnie, but I know that you have to make time for YOURSELF too.

 

take care

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I agree with Louise above - it is very important for you to stay strong - it is very difficult to keep helping others if you are weak yourself, you can only be of great benefit from a position of strength.  So please don't let yourself be dragged down, even when the chips are down.

 

Watching is more difficult than being the subject, especially when the person you care for is unconscious and unaware of what is going on.  Nevertheless it can be difficult for them if they are awake and suffering pain and frustration.  Either way it is difficult for the carer and if the patient is aggressive, that can be upsetting too. 

 

And that is why this group is so good - because there are both sides of the camp on this site, with a real understanding gained through bitter experience, who can give you meaningful help.

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