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My First Post - Anyone in a similar situation?

Posted , 3 users are following.

stevenroyhush
stevenroyhush

Hi Everyone, I am new to these forums but thought it would be good to communicate with like minded people.

My partner had a large stroke in December 2015 while we were on a cruise, luckily the ship was docked in Naples at the time so we were able to get him to a hospital quickly.

They suggested it was a large bleed on the brain and further examination revealed that there was evidence of earlier smaller bleeds also, although we were not aware of anything ever happening in the past.

He was kept in the hospital in Naples for 14 days until he was well enough to be bought home and then for a further 10 weeks in our local hospital here in the UK.

Glyn's condition was quite bad, he had almost no communication skills, was unable to control his toilet needs and was not able to eat without a great deal of help.

At the end of March I was allowed to bring him home and since then he has been making small improvements, however we have had to move to a much smaller apartment and make a lot of lifestyle changes not only to help him but also for financial reasons.

He is still unable to walk very far and although his speech is improved he still has a lot of difficulty, his writing and typing skills are pretty much non existant also at the moment.

As his partner I have found the massive change in our life to be hugely difficult and I have to shoulder all of the stress and difficulties involved pretty much on my own.

However I know that Glyn would have done exactly the same for me so I have done it willingly and with the knowledge that I love him now even more than I did before.

I don't know what the future holds for him but I will be there and will do my best to make sure he gets better .

It would be nice to hear from anyone who has been in a similar situation and anyone who has any tips about how to help him and how to help me stay as chilled as possible LOL.

1 like, 4 replies

4 Replies

  • RHGB
    RHGB stevenroyhush

    Posted

    I posted a similar thread about a year or more ago. I thought people might want to talk about it, but I don't think anyone ever replied.

    I had a massive stroke a couple of years ago, it was a bleed on the brain, with a midline shift of 6mm. Mine was brought about by too much alcohol over a long period, that and the unchecked hypertension that it caused. So I was in for a stroke and a poorly liver as well.

    Between the two of them, the doctors didn't know which to treat first (I underexaggerated the liver bit). I am also married and it was a difficult time for my wife (I was 48 at the time). I was not expected to survive and the consultant, in a nice way, told me as much.

    I went into my local hospital on day one and was transferred to the specialist hospital (one of these super hospitals) on day two, where I spent the best part of two months. After I had got to the stabilised stage, they were looking to transfer me back to my local hospital, for care and physio, but they said no, I was too bad. So they contacted the specialist stroke rehab hospital that is just down the road from my home and they said that I wasn't bad enough.

    In the end, I threatened to discharge myself, if they didn't, I just wanted to come home. I had lost the use of my legs in hospital and half the use of my right arm (co-ordination). Since no one in hospital seemed that interested in getting me walking again, I started my own physio and tried walking in the bathroom (they are quite big to cater for disabled (as you probably know), then around the ward and I think the one kindly nurse phoned the mobility people, who came and saw me, gave me a zimmer frame and then came back a couple of weeks later and gave me a walking stick.

    This infuriated the ward nurses, because now I could get out of the ward. I was known for falling over, I had a big red sign above my bed to warn staff that I was a major risk for falls. I used to fall in the ward, I'd fall in the bathroom, I'm 6'2" and you know when I take a tumble. So I used to jam the door from the inside with the chair. The staff would hear me fall and try and open the bathroom with their master key, but couldn't budge the chair.

    It used to drive them mad. I just used to say, take me somewhere daily where I can learn to walk supervised and do physio and I'll stop this, but they didn't so I carried on ignoring them.

    I was lucky, when I left, I was still a bit stroke dazed if that makes sense, but I had my marbles and I walked out, with my walking stick, which I kept as a momento, it was new and cut for my height, I may need it one day.

    The day I was discharged my wife collected me and asked the ward nurse if there was anything she needed to know, and the nurse just said, no, here's his meds, the instructions are on the packets and that was it.

    I did have a visit with the neuro consultant as an outpatient but didn't get anything from it and they refused me physio, so I had to go to my GP and he got me back in there for physio. I also had speech therapy because I had a slight slur and the psychiatrist made sure that emotionally and cognitively I was okay.

    So, what I am trying to say is, it is quite normal for there to be no after support, people don't visit this forum and seek like minded people to talk as much as I thought they would and it does get better with time, I know that is easy for me to say and not so easy for you.

    • loxie
      loxie RHGB

      Posted

      I had a tear in my eye reading your post RHGB, I find it totally disgusting that immediate rehab is not available as it should be.  It's an idiotic situation really - if proper physio and rehab was available promptly, your ongoing support needs would be reduced which in the end would cost less in the long run.  How shortsighted our medical provision (or lack of) is!  I havent experienced a stroke thankfully but I did have a major injury a few years back and my mobility was severely affected.  I waited over a year for any  physiotherapy, which was very effective in improving my mobility and reducing pain - but why did I have to wait a year - and I only ended up getting it by complaining to my local member of parliament.  What a sad sad reflection on the UK NHS system.   Stroke sufferers benefit greatly from prompt and comprehensive help, without which they can need greater support at greater cost - how back to front is that.  I hope you continue to improve and manage to get the help and support you need. xx
    • RHGB
      RHGB loxie

      Posted

      That's very kind of you, but please do not feel sorry for me. Although bleed on the brain strokes are very serious (especially with midline shift), much more so than a TIA and carry a high mortality rate, I came out of it fairly well.

      I did as mentioned have my troubles on the way. I gave them 5 days notice that if they didn't discharge me, I was going to self discharge. I thought, I'm either going in 5 days, or someone is going to come and talk to me and ask why I want to leave and maybe explain to me why I should stay and want they intend to do to improve the situation.

      Days ticked by and I said to the wife, make sure you're here Thursday afternoon, don't leave it until visiting time in the evening. I said on the Wednesday to the ward nurse, I'm off tomorrow, I've not heard anything, is there anything I need to sign, or do I just walk out?

      On Thursday, an hour before I was about to be picked up, the neuro consultant came to see me. It was a surreal conversation and at one point I had to say, you do know I'm going home in less than an hour, whether you sign me off or not. This isn't a conversation about whether I am released, it is about whether you discharge me or I self discharge.

      He then asked me why I wanted to leave and at that stage I just felt like telling him to go away (but not with those words), but said, do you know what it's like to lose the use of your legs and be in a wheelchair or a chair with wheels at the back to go to the toilet, I'm 48 not 98. To which he said, we have a physio unit on the floor above, would that make you stay. If you had told me about this three weeks ago, yes, but not now, I'm going home now.

      I bought my patient records early this year and it is quite clear, that he had to see me before I left to do his sign off.

      But the classic was the rehab hospital where they saw me  two months after I was discharged from the other hospital. I got a letter, telling me, amongst other things, to make an appoinment down the job centre. This came about because I had enquired how quickly I would be allowed to drive again and go back to doing work - I didn't ask for employment advice and I certainly object to being told to go down the jobcentre, two months out of hospital.

      A day later I received a letter from the physio dept. saying I didn't meet the criteria for physio, but don't forget to make that appontment down the job centre - I kid you not, if I could post links, I would scan it and post it.

      Anyway, this is not about me, it is about what can happen. I hope others have an easier time, but just in case they don't, they know that it isn't just them that have been let down.

  • wendy80842
    wendy80842 stevenroyhush

    Posted

    Hi Steven, I'm sorry that you're going through all of this, it's terrible. Glyn's lucky to have you though. If it's any help, I had a massive subarachnoid haemorrhage (SAH) which still counts as a stroke, in 2012. I was very seriously, dangerously ill at the time. While recovery can take a long time, it took a few years for me to get to a point where I felt like I'd got my faculties back, properly. There is help available, my advice is to work WITH rather than against the 'systems that be', as it's in everyone's interest for Glyn to recover as well as he can. There ARE lots of us who have been where both you and Glyn are, right now, and have come out the other side, stronger for the experience, so please don't lose hope. As for YOUR stress levels, look online for for relaxation, breathing exercises, I've found them very useful before.

    Best wishes for your immediate and long-term future. X

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