Past thoughts

Just sitting her thinking about the past, when the children were born, the love we felt for them, the times things went wrong for them, and we cried with them, when they were sick we worried about them, when things did not work out for them as they were growing up, and then they had there children, and it all starts over again.

We we were young, just married we had all these wonderful ideas, we worked hard, built a good life for our little family, try to bring them up to be decent honest people, which we achieved, I think.

George had two jobs, and was studying, to become a Building Surveyor, which he achieved, It was a long hard road, to get where we are, not a holiday every year, to busy making a better life.

Then what happens George, changed getting very aggressive, shouting, getting upset, which nearly broke our family up, I fought to keep everything together, I did it, and then years later, this horrible illness, has come into our lives, and thinking back, this was the start of this horrible PSP. The plans we made, the different things we wanted to do, have all gone out the window, why oh why did this happen to us, but then we all say why us, all our dreams have disappeared. We all try and remember the good times, but they seem such a long time ago, like living in a dream, and thinking we might wake up and it will all be ok!!!!

Love to you all have a good weekend Yvonne xxxxxxxxxxxxx

14 Replies

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  • I know I talked about this when I first came on to this site...but B also became quite angry....I thought it was just the kids or something. They were that age that a dad pitting his fist through the wall was "Normal?". Kids got older , dad got calmer, and then he started sleep walking....years of that, then he started making no sense when he was talking.....not ALL the time but enoughI thought he was having mini strokes....then the falls.....and then he just up and quit work one day....and that is when I put my fears to the front of my thoughts and much stuff later, here we are today! Many things had to change for me, behaviorally....One of which was anger at B. It was like my own PSP symptoms! Anger swirling around in a sea of emotion crashing onto the floor of reality.....And now my limbs are almost frozen as I try to move forward in life....and I seem to be more apathetic to our future knowing that tomorrow will be a rerun of today....oh well.....

    With all that said I sound like I don't take any of my own advice. But I do.....when I'm not so tired I cannot see straight....but even still I know God is still there with Bruce and with me. And I really do take comfort in the Word.

    You and I have so many wonderful Memories of our husbands and family. We cannot let PSP destroy them by replacing them with sadness a hopelessness. Don't let PSP win Yvonne....You are stronger than the disease.....

    AVB

  • D never got angry. In fact I don't think he had a clue of what is and was going on. He just says when will I get better. I don't know what to tell him. Since he had the tooth pulled on Monday he has gotten a lot worse. Finally spoke to the neurologist and she said any infection or trauma that a PSP patient gets changes things for the worse. They don't know if he will go back to what he was or remain the way he is now.

    Yes the good times, such a long time ago. And now this. Have a apt to see her on the 23rd but he having such difficulty moving if I can't get him to walk with his walker I won't be able to get him there. Not going to think about it now. Going to give him lots of water and see if he recovers some what. Fingers crossed.

    Have a good weekend and lot of hugs and love Yvonne,

    Audrey xoxoxox

  • Dear Yvonne,

    Oh for goodness sake I have just written a long reply and lost it somewhere so I'll try again!

    Reading your post I felt like I could have written it myself, we also worked very hard while bringing up our three children, trying to give them the best life possible. At one time Keith had three jobs, full time as an industrial chemist sometimes working twelve hour shifts, part time bar work in the evenings and then on call at night as a retainer fireman! Looking back I don't know how he managed it but he did!

    He also started having strange personality changes and we couldn't understand why, he was feeling dizzy all the time, shuffling while walking, losing his balance, croaky voice, horrendous down the stairs falls, endless visits to doctors and consultants to try to find out what was going on and then the awful diagnosis of PSP.

    I remember researching on the internet one evening when he was in hospital, they thought he may have Parkinson's Disease and when I was trying to find out more about it there was a link on the page that took me to the PSP site, I remember reading it and thinking to myself "No it can't be that it's too rare, who could be so unlucky!" and I dismissed it thinking there wasn't a chance of my Keith being so unlucky! How wrong I was even though I had told my eldest son that I thought it was something more serious!

    We had such plans for our retirement, holidays twice a year etc etc, but all those plans have been taken away from us now, so all we can do is try to make the best out of each day, in between the endless visits to the loo!

    I also wake up in the morning thinking I've had a nightmare and then the reality kicks in!

    So Yvonne all I can say is, keep on doing what you're doing and that is taking care of George, we all know that if the shoe was on the other foot they would do the same for us! It's quite amazing how strong you can be at times like this, I'd never have thought I would be able to cope with this, but I do because I love him....

    I also have been reminiscing, I will send a photo....

    Sending you both love and hugs....Pat xx

  • Hello, I'm sorry that I am not contributing much, I follow the posts but, it has been such a stressful time for us, I cannot post anything positive, I do appreciate all the posts and I hope soon I can join in, please forgive me for not commenting , I really do want to join in, thank you all for all you share, love from me xxxx

  • Bless you nanonthenet, keep reading our posts, I do hope they help in some small way and when you feel ready we are all here for you,

    Love and hugs....Pat xx

  • Hi Nanonthenet, please don't think you can only post positive thoughts. Tell us about your stress, share your angry thoughts, we have them ALL the time! By putting your thoughts on to paper, well email, might help you! Certainly, we can then, try and give you advice. Think of this site as a huge shoulder to cry on!

    We have to help each other, we REALLY understand what you are going through, so are here if you need us!

    Lots of love

    Heady

  • nanonthent 1 can feel you are really sad, we are all here to support each other, you can only take one day at the time, and remember we are all here. Thank you all for your replies, we are strong people, we have to be, don't we?

    Audrey haven't you got a wheelchair? It would be much easier to get Don to the appointments you need to go to. Abrike lucky we have our children, and we are healthy to look after our love ones, even though we are all so tired. Pat it was a shock to us as well, I thought George had a mini stroke, we can only dream of our retirement, keep strong Pap, sending you all a great big hug, and sweet dreams, hopefully we will be able to sleep. Lovely weekend to all. Yvonne xxxxx.

  • How similar all our stories are.

    I wonder how far we need to go back to see the first symptoms ?

    I can now recognise changes that worried us. C first visits to GP were about feeling giddy. He fell a few times. Other things were there but many symptoms I didn't connect until we saw the neurologist. [ he fell backwards into his chair for years ]

    I thought he'd had a mini stroke but the diagnosis of PSP was out of the blue.

    He didn't have personality changes until a couple of years ago. But they are more about a lack of energy. He was always bounding with energy and enthusiasm and I miss that more than anything. The conversations and laughter.

    We are now in another country and there is no return.

    But how much we have all achieved in our lives. Celebrate that. We have wonderful memories. We were ready to continue but that is denied us and we have to manage with what we have.

    Hope you can enjoy this weekend.

    love, Jean x

  • Hi Jean,

    I was really interested to read about C falling backwards into his chair because P has done that for years ! We even had to have an armchair repaired because he broke the springs. Another thing was his TINY writing, although it has always been small, it became so tiny that even P couldn`t read it.

    XX

  • Yes. I made C go to Alexander Technique classes to improve balance !

    C used to have quite large flowing writing. It became smaller and smaller and now he struggles to organise his thoughts and can't read it afterwards.

    His eyes became more staring and I connected that with neurological damage because my mother was the same after a small stroke.

    Jean x

  • NanBabs, I have two chairs left from dining room table that seats 8......oh and we have a "new " dining room table...B has learned somewhat how to manage his falls . He does not expect objects to give him balance anymore. He still falls but save the window...he hasn't had furniture annihilation falls.... hahahah And if you must replace furniture...restaurant chairs and office furniture are the most sturdy!

    AVB

  • Yvonne, I think we could have written this blog!

    S too started having temper tantrums, getting very upset, if life wasn't perfect. In other words, life was getting out of control for him. For ages, I thought it was our marriage breaking up, even offered a divorce at various times. On good days, when I could get him to express his feelings, he said he couldn't understand why he got so upset. Then I realised, sub consciously that something was wrong. I now know, I was starting to take over. When travelling, I would book things in advance, making sure everything ran smoothly. Big rows if it didnt! One day, he was trying to get me to understand all about our finances. I hit the roof, knowing that I was now having to be in control of all aspects of our life. This wasn't S, he use to be the biggest control freak! By now the temper tantrums, were getting worse and two or three times a day. I just knew things weren't right. His stroke hit then, naturally for the next couple of years, that got the blame. Thankfully, the tantrums stopped with stroke. Then the falls started, the rest is history!

    I don't know if was PSP, but S spent hours and hours, trying to organise the company, so we could retire to go off travelling. He simplified all our finances. This has helped enormously, in the build up to diagnoses and now! It was almost as if he knew, long before, that he had a problem.

    I wonder if he did??????

    Lots of love

    Heady

  • He didn't need to know exactly what was happening but I know that in the last year I have recognised that I simply can't multi-task or remember as I always could. I know I haven't got short term memory problems but am bright enough to anticipate problems and change behaviour. You said S was bright so he also would realise the coming changes and plan in advance. Not necessarily knowing quite how bad !!

    Thank goodness he did !

    love, Jean x

  • I think the hardest bit for me , apart from watching my husband suffer, is having to do all the tasks that my husband did , as well as those I already did. He kept telling me I should get more involved in our finances. As his pension is in drawdown , he has to submit a tax return. Last year, I could not access his details without a Power of Attorney ( which we have, but have not registered yet - he is not mentally unable) or without his consent. As he was in hospital due to a replacent knee op. going wrong, we ended up being fined £100 for failure of tax return plus more fines if we failed to do so. His accountant was ill and I had to work really hard to get it sorted. I was pleased to get the fine reimbursed eventually but what a carry on! This, made determined to get all I could in the way of help. After I asked the OT , they gave him an electric wheelchair which was not suitable so I campaigned for one with a little battery that I can push. Much better! I contact the hospital, doctor etc, explain the situation and they provide transport or come to the house. I was proudly independent but not now, I ask for and get help whenever I can. I think having to rely on others is hard if you have been used to sorting out your own problems but it has to be done. It makes life much easier. As to thinking about the happy past, I bask in the thoughts and am very grateful that I have them.

    Have a good weekend. Sending Hugs. X

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