Then and Now

I am changed. I am not the person I was a little over two and a half years ago.

Then -

I had heard of PSP but didn't know a huge amount about it. Like many people I probably linked it with Parkinson's Disease in my mind. Either way it was something that happened to other people.

Now -

It fills my mind, day AND night. If I'm not lying awake at 4am thinking about it then I'm probably dreaming about it! I'm intimately acquainted with it's foibles and cruel twists. Not a day goes by when some part of my life isn't affected by it. I almost feel I could do a teaching session on it.

Then -

I was finding my feet in a new profession after 4 long years of study.

Now -

I've reduced my hours to less than half to help support Dad looking after Mum and some days my "real" job feels like an inconvenience.

Then -

It would take extreme provocation for me to say Boo to a goose!

Now -

I'm like a tigress defending her young and I could rival an ass for stubbornness and a dog with a bone for persistence in trying to get Mum the help/equipment she needs. They probably think "Oh no, not her again" whenever I call but I no longer care what people think of me. I will not tolerate people ignoring or patronising Mum.

Then -

Although I loved my parents dearly I probably couldn't have told you when I'd last told THEM that!

Now -

I can tell you that I told them 2 days ago...and the day before that and 2 days before that, and the day before that and ...well, you get the idea!

Then -

I wouldn't have dreamed of going into a loo with Mum and waiting while she had a wee

Now -

I don't think twice about it and recently even took the chance to have a wee myself while we were there!!

I have no idea where we will be in another two and a half years but I do know that I will be involved with PSP in one way or another.

My life is changed forever.

22 Replies

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  • Oh Kathy how I can relate to your words. Although I hadn't heard of PSP for long really before dad passed away I had been living with it with dad for a long time before diagnosis. It made me smile when said you wouldn't have dreamt of going to the loo with your mum and waiting while she had a wee Those were always my thoughts with dad even to cleaning him afterwards, but you do what you have to do with this terrible condition.

    Even though dad has passed I am still involved with PSP even if its sending a comment back to the people on the forum or fundraising or trying to raise more awareness with professionals in my local area. It has kept me going to be honest.

    You take care of yourself and I send a big hug to you, your mum and dad

    Take care

    Lesley x

  • Dear Lesley,

    Thanks for the hugs! Knowing that other people support us and are there for us is so comforting.

    I always have such mixed emotions when I hear of someone who is no longer with us. I'm so sad for their loss, for their loved ones left behind but am pleased that they are finally free of PSP. I do hope you have friends and family around you at this time. Your online PSP family are always here!

    Take care

    love

    Kathy x

  • Your writing is quite poetic in a way and so easy to relate to. How PSP changes our lives, our outlook and our preconceptions.But not one word of self pity. How lucky your parents are to have you.

    Take care

    SheilaN

  • Thanks Sheila,

    I do have days when I think "why us? Why MY mum??" but Mum always said "Worse things happen at sea" or "there's always some one worse off than you" and as she told the consultant when he gave her the diagnosis " We've all got to die of something!" so we square our shoulders and carry on!

    Love Kathy

  • Kathy that was so moving and so so true not only for you but for all of us. Think we can all relate to it and how PSP is not an individual disease. It also affects the carer, mentally, emotional, physically and begins to rapidly change your own family life, career and plans.

    Your 'wee' comment made me smile as I felt excactly the same and now think nothing of it...how the changes creep up on you!

    Keep going Kathy, funny now that through this site and PSPA when things get tough, I know that there are so many of you going through, thinking and doing the same thing! xx

  • Thanks Jan,

    That's what really prompted me to put my thoughts down, when it suddenly dawned on me how many changes have crept up on me almost without noticing!

    As you say, its so good to know we are not alone!

    Love Kathy x

  • Kathy, I completely relate to everything you have said and also the comments made by the others on here. I did smile re the wee! Oh the things we do!!! I care for my hubby who has PSP and recently while returning from Cumbria we had to stop at the Services for the loo. As he often forgets to close the zip on his trousers I went into the loo to help, and just like you, I also used the facility myself! It's quite amazing how inhibitions disappear and practicalities take over.

    So sorry your own life has had to be put on hold while you help to care for your mum, but how proud both your parents must be knowing that they have such a caring daughter. Well done you.

    Speaking as a parent now, there is nothing we like to hear more than when our daughters (and indeed our four grown up grandchildren), say those words "I love you". It helps both Tony and I to get through what are sometimes quite challenging days.

    Love to you and your parents and take care. Keep your chin up. They are very lucky to have you.

    SuzieQ xx

  • Hi Suzie,

    We were in a loo on the sea front in Eastbourne, the "non-disabled" loo was the other side of the prom so, as you say, practicality took over!

    I'm so glad you have your family around you

    Love to you and Tony

    Take care

    Kathy xx

  • I smiled at the wee as well! It seems so normal now, when a year or so ago it would have been unthinkable to go into the loo with my Mum.

    Kathy - thanks so much for posting this, it's really encouraging.

  • Hello Kathy,

    Yes, yes, yes, everything you say YES I just have to agree with everything. PSP does change you. Like you everytime I visited my husband's care home in his latter stages, I used to imagine the staff were staying "Oh Blimey watch out, here she comes again!" Luckily Richard was in one of the best places but even through no real fault of their own, if staff think they can cut corners they will. I always wanted to see that everything that was supposed to be done for him, was done and I wouldn't stand for any nonsense.

    Gosh, when I think how I used to be too; so quiet, almost shy and always standing at the back. Now I am to the one that is heard above everyone. I promised Richard from the start that I would do everything in my power to make sure he had the best care we could get and that we would see this thing through together. Richard sadly died in April.

    Funny how our life changes path isn't. PSP does change your life for every and it took over my life too. I drempt about it, thought about it, read about it and talked about it all the time and I can't simply switch off now. So by helping others still going on the journey by offering advice through this website or the PSP Association forum page, then I will. It's my way of thanking everyone who helped us.

    Remember, only WE reading your words Kathy understand. Well done and stay strong.

    Love Maggie

  • Hi Maggie,

    I turned into the relative from hell when Mum was in respite care last year! You could almost see the staff ducking out of sight when I went to visit ;-) but if we don't speak up, who will??

    I'm sorry for your loss so recently and hope you have friends and family around you at this time

    love Kathy xxx

  • Hi Kathy.....I understand you completely. Frank & I have never had any inhibitions throughout our marriage so when his sense of direction in the bathroom became a problem ( I was fed up of mopping up after him especially in the middle of the night ) I had no hesitation in getting a portable urinal bottle for him to use. Unfortunately because of his balance he isn't able to hold the bottle as well as stand up so I hold the bottle for him...no problem. We have 2 bottles so I keep one in the car for use when we're out if necessary. I also have a Radar key for the disabled toilets & have to admit that I've used it once rather than have to leave him in his wheelchair outside whilst I went to the Ladies. Needs must !!!!!!

    As for your own personality changing...well!! Frank was always the one talking to everybody & I joined in occasionally. Now I'm the one who talks to anyone & everyone whether they want to listen or not!!!! PSP has a lot to answer for.

    Take care & keep smiling. Hazel B xx

  • Dear Hazel,

    We have a Radar key, too. They're very helpful aren't they? And at least you know the "facilities" should be fairly clean!

    Thanks for replying

    Love to you and Frank

  • hi

    i had not heard of a radar key

    how do u get one\plz?

    love jill

  • Hi Jill,

    Try this link

    radar-shop.org.uk/Detail.as...

    the keys give access to disabled facilities all over the country, which only keyholders can use.

    love Kathy x

  • thanks kathy

    i had never herard of radar b4

    love jill

    xx

  • Kathy, I think we all know how you feel. PSP doesn't just affect one person in the family, it changes all of us. We all are experts now- I have no doubt you could run teaching sessions- unfortunately, you know much more about PSP than most of the local heath profesionals.

    You're strong and determined and doing a wonderful job. Your mum is probably bursting with pride

    best wishes

    Fiona

  • Hi Fiona,

    Thanks for your comments :-) I get so mad at the blank looks I get from most Health professionals when I reel off Mum's medical history. I had one Dr in A+E look at me as if I was mad when I said "She didn't trip, she just fell"...he said "people don't just fall" and I said "people with PSP do!"

    He didn't really have an answer for that!

    I hope you are keeping well

    love Kathy x

  • Kathy, I love what you wrote and oh my goodness, can I relate too!! My mum was never that open about things like the loo but I too have been exactly where you have. I find it quite difficult still but needs must and my mum doesn't seem to mind, which is the main thing!

    In fact, when my mum was diagnosed, she said - que sera sera, whatever will be, will be which sticks in mind, she seemed quite accepting.

    Cathy

  • Hi Cathy,

    Mum also seems to be very accepting of this horrible illness. She has never once said "Why me?" and the only time she really gets distressed about it is when she thinks she's being "a burden" on the rest of us.

    However bad it gets, she will never be a burden.

    Love to you and your Mum

    Kathy x

  • Kathy, you brought a sad smile to my face, why is the Loo such a dominent feature in our world. Why can my dear hubby time the need for a bowel movement just as I pick up my handbag to leave his nursing home, this happens regularly, no matter what time I visit, I`m sure he hates having to share his very private moments with an attractive 19 year old care worker, however kind they may be, I suppose I should take it as a compliment that he is at ease with me, but I do sometimes wish I could reprogram his body clock.

  • Ellie,

    Your comments made me smile! :-) Maybe your hubby does it to delay you leaving?!? He must love you dearly and how hard it must be for you to leave him behind each time.

    Love to both of you

    Kathy x

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