I have been meaning to blog for a while!

As the title says, I have been meaning to blog for a while but everything just seems to be on top of us at the moment. I had a ridiculous amount of uni work to do in a short space of time and during that time my cousins grandma died (she was like a grandma to me).

This all happened when my Dad was in respite care-a break for Mum? No. My uncle has finally decided to get involved which would be great but he has been taking my Dad out of care (everyone knows you can't choose when to get respite care and other people would bite someones arm off for the chance!) So this was more stress for my Mum as she had constant worries as my Dad was not having professional care and quite frankly my Uncle doesn't really know what he's doing. I just pray that he'll be as willing to help as he seems to have been and hopefully we can turn it round and work together.

Having had a week back in Nottingham for the funeral, it was really hard being back however because there wasn't the constant reminders of PSP around (like Dad's wheelchair etc) it made it easier at such a hard time however it was a shame that he couldn't grieve with us all properly.

I went back to Sheffield last tuesday with my 14 yr old brother, for a nice break for us both. We had to leave friday night as my housemates were using drugs in the house so now on top of everything, i have to find somewhere new to live!!

I am now back in Nottingham and I'm adding to the stressful environment already in the house especially as it would have been my Grandads birthday yesterday so I know how hard that is for my mum, however I feel as though I've had some sort of breakthrough; I'm finding it easier to talk to Dad. In the past I've found it really hard to hold a conversation with him, at times even acknowledge him. I laughed with him yesterday when I told him I had shared the story with a friend of a holiday when I was younger where we were on a campsite and I was learning to ride my bike but i would NOT learn. For some reason I just really didn't want to learn (I get my stubborn side from Dad) so one day he took my bike away and hid it but gave me £1 and told me that he had sold my bike to a little girl who wants to learn to ride it. Oh how I cried!! Needless to say I soon learnt to ride the bike.

We have this new 'machine' that helps lift Dad up. I can't even describe what it looks like, apart from when the strap is around dads waist, he holds on to some handle bars and it then lifts him up and he looks like he is riding a Segway! We told him we were going to take a picture and photoshop a Segway into it!

Today was one of the first times in a while that I had been left alone with Dad. Panic! What do I do if he needs the toilet? How do I help him? Luckily he now has a convine which goes into a bag attached to his leg so I don't need to worry about that. He did not need to be moved however I did need to make him dinner. Just some simple soup & I cut the bread up into little squares and put them all in the soup so it made it easier for him to eat it. But as I was mixing the bread in I was fighting back the tears. I think I have finally been able to accept that my Dad is still my Dad in some way and I fear that I have realised this too late. All the time that I have hated to be around him and just got on with everything as a coping mechanism, and now I feel lost. Lost with the emotion of it all.

Going back to the convine, Dad keeps trying to empty it himself when it doesn't need emptying, and it goes all over the floor so the house doesn't smell to pleasant at the moment but we can tell he's getting so frustrated.

On a slightly happier note, Vera (my cousins grandma) always wanted to help me with raising awareness for PSP and was saving money! In her memory all the donations from the funeral are being given to the PSP Association which is BRILLIANT!!!!

409 people have also 'Like'd my nomination for the Olympic Torch which has been a great way to raise awareness too!! We have until September to share my story so if you could please spare 10 seconds if you haven't already done so, or just tell a friend to 'Like' it then that would be amazing :-) lloydstsblondon2012.co.uk/e...

Hope you are all well, will read blogs now!!!

xx

5 Replies

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  • Hi Hannah

    What a terrible time you are having. It isn't easy dealing with the condition and I know what its like seeing your dad not being the strong man you know and changing every day. Although you may feel you are adding to the stress as you can see everything your mum has to cope with, I am sure she is so pleased to have you there helping her out with your dad. My dad also used to try to pull out or pull off anything that was attached to him, he didn't mean to but part of the condition used to make him fidget and pull at things. He too got very frustrated

    It made me smile when you were saying about telling him that you had laughed with him about a story you had shared with a friend. I found those times reminiscing with my dad the best as we could get quite a lot of silent chuckles out of him and they are the memories I hold onto now as I know he was listening and enjoying those chats.

    Never ever think its too late, your dad will know you love him and we can see this by the way you talk in the blog. It is very hard to come to terms with the condition and you are there now with him and that is what matters.

    I've had a look at your nomination for the olympic torch and although I don't have facebook, as I currently have our website for the fundraising we are doing for PSPA would you be ok if we put a link to it on our website popsforpsp.co.uk ? Let me know

    Take care of yourself Hannah and don't be too hard on yourself.

    Lots of hugs to you, your mum and your dad.

    Lesley x

  • I suppose it's easy to be hard on yourself. I think we're all feeling quite sorry for ourselves too!

    Yes I loved that I could talk to him about that holiday..even though we've had to get used to the noise he makes when he is laughing it is a wonderful noise.

    Wow, that'd be brilliant. I'd love you to put it on your website, thank you!

    Take care xx

  • Hi Hannah, Stacey my daughter may have been in touch, but just to let you know your link is now on our website.

    Take care

    Lesley x

  • Hi Hannah...you've definitely been having a tough time. Bad enough with PSP related stuff but having to find somewhere else to live due to your housemates' habits is the pits!!!! Hope you find somewhere tons better because you deserve it.My daughter worries about her Dad wanting the toilet if ever she was on her own with him but says " needs must " & they would both have to deal with it. Before I go out I always make sure Frank has had a wee ( he uses a portable urinal bottle ) so would probably not need to ask any one else.Just carry on doing your best for your Dad & good luck with raising awareness.

    A friend of my daughter's is doing a tandem skydive in a couple of weeks,organised by her employer, & she is raising funds for PSP...so far up to about £750.

    Take care & keep smiling Love Hazel B xx

  • Hi Hannah,

    Sounds like things have been more difficult lately than usual. I do hope you are able to find somewhere else to live this close to the start of term. It is great that you have been able to reminisce with your Dad; memories are so important.

    I am not on Facebook but have tweeted the link to your nomination page instead, hope this helps!

    hmfsli

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