Feeling Bleeeeurgh!!

[Hayleyald]

I am as always full of admiration for everyone on this site surviving this horrible disease or caring for someone.

I am sure you can all identify that some days pass and everyone is remarkably unscathed and other days it feels like the world is imploding......well today is one of those days.

I don't think that anything else in my life results in me experiencing such a diverse range of feelings. I feel such intense sorrow for my dad (psp sufferer) as my he gone from being such a physically strong and independent person to someone who is wholly reliant on my mum for everything.

In an average day I can feel happy that dad hasn't had ANOTHER fall, then I watch him struggling to find the words to answer a question, watch him using his sense of feel rather than sight to locate his drink, watch him try to walk despite his 'glue foot' which renders him frozen to the spot. Feelings can be so overwhelming yet they feel misplaced as I am not the one with PSP.

I watch my mum, attending to my dad's every need and worry at how long she can manage everything for.

I feel terrified at what the future holds and how much worse this psp journey is going to get for my parents.

There is not a real question in this post, rather it is just a forum to past that I feel bleeeeurgh to people who may understand what I mean.

Thank you for reading and keep up the good work- you are an amazing bunch of people.

xx

[abirke]

(((HUGS to you Hayley)))

I hope your world gets a little better very soon....I have alos noticed that some of the PSPers, though very far and away from each other might very well experience the same deterioration or even a bit of a good blip, all at the same time! Which of course will lead to carers weakness or joy! Again I hope for you that you start experiencing some joy....It sure sounds like you have things in perspective....a very important aspect to joy....

AVB

[abirke]

And thank you for sharing your feelings , I really appreciated it!

AVB

[NannaB]

Hi Hayley, I hope tomorrow is an unscathed one for you all.

Sending you a big hug.

X

[Kevin_1]

Hi Hayley

Every day I dread the next 'step down'

Over the weeks I see my darling fade a little more.

I read the feats of other carers here and think, "God I couldn't cope with that." But at each stage I get a little more sussed a little more skilful and somehow muddle through.

I make loads of mistakes... the folk here, who are further down the line, are my best guide.

I often feel worthless and incapable. Sometimes I am so full of tears, for days, that I just manage the basics and every chore is like moving a mountain. At other times I am so full of anger I find some of the PSP behaviour too much to bear and then I rant. I hate myself for that.

Other days still we find our old strong love and in small ways we reconnect... Tinged with sadness of what is lost, but those days are so wonderful and precious.

PSP is a thief. It steals from the sufferer and from those who love them. Little by little.

Will I cope with what is to come? I fear that, but so far we both have.

I do hope this is not too upfront.

I would add that I have always found myself to be strong enough and coping enough in this world, sailed the Atlantic single handed a couple of times, but PSP is 'rather testing'.

Warmly from just another getting by carer.

Kevin

[peterjones in reply to Kevin_1]

hi kevin how yer going now mate well mate if you have sailed the atlantic a couple of times single handed I'm sure a little thing like psp wont interfere with you I think that what psp hates the most is a strong will power and a bit,o exersize I'm not to keen on the second one but there it is mate I'm sure that you make a very good carer kevin I know that psp is very testing but it seems like that you have a good attitude towards it and I'm sure that your wife would agree with me best wishes to your wife and tell her never give in matey peter jones psp sufferer queensland Australia

[easterncedar in reply to peterjones]

Hey! That's you back with us, Mr. Jones! How are you? You got your computer sorted, and maybe your hand is better? So glad to see you. All the best, ec

[Kevin_1 in reply to peterjones]

Thanks Peter

Chuckling.

I guess I'm describing it and me at the worst.

We have good times too.

Good to see you around.

Liz will be pleased too.

Best

Kevin

[peterjones in reply to Kevin_1]

GOOD ON YER KEVIN SEE YER MATE REGARDS TO LIZ PETER JONES QLD AUSTRALIA

[Heady in reply to peterjones]

Wonderful to hear from you Peter Jones! It's been a long time since you joined in, hope that means your hand is now back in working order. How is this dreaded PSP treating you now?

Lots of love

Heady

[Satt2015 in reply to Kevin_1]

Very well written AGAIN Kevin!!!!! Big hugs to you n Liz x

[Hayleyald in reply to Kevin_1]

Thanks Kevin, I completely relate to what you have written and it is so poignant 'PSP is a thief. It steals from the sufferer and from those who love them' oh my goodness that is so so true.

Wow well done you....sailing the Atlantic some achievement. But yes PSP is a different type of hardship isn't it.

Bw Hayley

[Satt2015]

Hayley I get you, Psp is total shit and we all hate it with a vengeance!! The only thing I try and do is take one day at a time, sometimes 1 hour at a time, because this is so emotionally draining to watch and know there's nothing you can do to help!! Big hugs x

[Hayleyald in reply to Satt2015]

Hi Satt2015...I know I think it is the being unable to do ANYTHING to help the situation at times which is hardest. x

[Wishdoctor]

Hi Hayley,

I can totally relate, as my dad also has PSP. Such a terrible disease for everyone involved. I was at my parents' house and they found some pictures that none of us ever remembered and it was crazy to see how young and vibrant my dad looked. It's really hard to square with the image I have now. The worst thing probably was that my daughter was playing catch with him, with him in his wheelchair, and he was laughing and having a great time, and then, just as fast, he leaned too far to reach, and bam! Out of his wheelchair he went. Especially sucky because she was so upset and apologizing when all she was trying to do was spend time with him. I felt bad for my dad, but moreso for my girl, who is only 7. Afterwards, my mom asked did he want to keep playing, and I was hoping, for my daughter's sake, he would say yes, but he said no. Maybe that's me being selfish, but I don't want this to be something that stays with her, and I think if he'd kept playing, she would've felt better. Oh well. Such is life I guess. On the "bright" side, at least they haven't found much of a genetic component from what I've read. Can't imagine my husband having to care for me that way, or my kids seeing me get like that, or worst yet, having them go through this awful disease themselves. Hugs to you. Hope you have a few good days and make some good memories. Sometimes, even things like rolling a kids car across the table to him makes for a good time.

S

[Heady in reply to Wishdoctor]

I understand where you are coming from. No doubt your daughter will worry about playing that game with her Grandad again. Why not change the game, cards, draughts, any simple board game. Or get her to practice her reading with Grandad. Anything that will keep that contact there for as long as possible. Just make sure you keep the blame firmly in your Father court, Grandad fell, because Grandad was being silly..........

Lots of love

Heady

[Hayleyald in reply to Wishdoctor]

Hi Wishdoctor,

Thanks for your reply. I agree sometimes I watch and listen to my son who is 3 1/2yrs talking to my dad and it is so lovely as my boy doesn't know anything different about my dad so he just accepts that is how he is.

Sometime for me it is not the huge things that get me but the smaller things like watching him feel for the handle on his cup and suddenly in that moment it feels so devastating. Where when I am helping to change his clothes after he has had an accident I can manage completely fine....bizarre isn't it.

I agree about the genetic component element.....I looked for information about that following my dad's diagnosis.

Hope you and your family keep enjoying games of 'chase' lol- lovely to hear that there is still some normality (despite it not ending well on this occasion)

Hayley x

[Katiebow]

What words of wisdom and compassion, you seem to see things very realistically but with such a caring attitude. What a lucky mum and dad to have such a lovely daughter supporting them through this horrendous journey called PSP.

Love Kate xxx

[Hayleyald in reply to Katiebow]

Thanks Kate- I agree the journey is horrendous- this is definitely not what he had planned for his retirement!!

Bw Hayley x