Loss

[Kathy]

LOSS

I feel it like a physical pain.

A heavy, leaden weight sitting on my chest.

Gargoyle-like,

Grotesque.

It's long claw-like fingers

Clutching at my heart.

Squeezing the lifeblood from it,

Turning it steely grey.

[CateT]

I know that feeling Kathy.

I've been riding the PSP rollercoaster this week!

My mum, who can barely talk anymore asked my dad to ring me for her and then, when she had the phone, I heard her say as clear as day - Hello baby. Well after that I bawled for about an hour. Somehow, it is so much harder for me when I see glimpses of my mum as she used to be. It really brings home what I have lost.

It is hard enough to lose a parent, but sometimes unbearable when they are still here, but also not here.

Two days later she got really frustrated trying to answer something I asked her (we have a thumbs up/thumbs down code) when we got tied up in knots of yes or no and she turned while I was driving and hit me 5 or 6 times on the arm while making a horrible noise. I just pretended it hadn't happened. My mum would never do that to me.

But my heart broke just a little bit more. Even though I know she can't help it and didn't mean it.

This morning my mum passed out when she was cleaning her teeth, I don't think that is part of PSP? She is ok now but I am on edge and worried.

Happiness, bitter sweetness, anger, sadness and fear have been my companions this week - just another week living alongside PSP.

Cathy

x

[CateT]

PS Sorry - just realised I've hijacked your post. I loved your poem - although it is sad, its very evocative xx

[Kathy in reply to CateT]

Hi Cate,

Please don't apologise - in no way do I feel that you have "hijacked" my post. I'm sorry you've had such a tough week.

Take care of yourself my lovely

Love

Kathy x

[Lorri-2]

Hi Kathy

I know how you feel, some days it is just so hard to understand why we have to suffer with our loved ones, life is so fragile.

Lorraine xx

[Hidden]

Hi Kathy

I know how you feel. I looked after my husband for seven years and it was by far and large the psychological pain of it all that got to me. We had planned so many things for our retirement, simple things but unfortunately it wasn't to be. Even now, three and a half years since his death, I still feel as though we were somehow cheated by life. The one thing that consoles me is that I now realize what a comfort I was to him during his illness. To have someone you love and who loves you, in your hour of pain, is a great blessing.

Love

Lina

[Kathy]

Lina and Lorraine,

That's the best thing about this site - there is always someone who identifies with how you are feeling at any time

Thanks for taking the time to respond.

Love Kathy x

[LesleyB]

Hi Kathy

A really thought provoking poem. Its terrible dealing with the ongoing loss that you have with this condition and your words say it so clearly. I certainly felt the loss for dad and myself.

Take care Kathy and look after yourself

Lesley

[Kathy in reply to LesleyB]

Hi Lesley,

Thanks for taking the time to respond. Some days I find it harder to deal with than others Mum not having a good week this week

Love Kathy

[LesleyB]

I'm so sorry to hear its a bad week for your mum and when they aren't having a good week neither are you. Its terribly hard to bear and its difficult to see any light at all sometimes. My thoughts are with you.

Take care of yourself and I send you a big hug because carers need hugs too

Love Lesley x

[Fiona_McL]

Kathy, this is lovely. We all know only too well how you're feeling. The carers, the bereaved, and the people with PSP- we all have our good and bad days.

I hope you're having a good day today

Fiona

[Kathy in reply to Fiona_McL]

Thanks for your kind comments Fiona. We've not had a bad week this week although Mum has been very sleepy. I went to the symposium on Wednesday and it was very informative, helpful, slightly emotional and a generally great day! Hope things are good with you

love Kathy x

[Julie-Alabaster]

Hi,

Never good to write shizzz after a few large vodkas, well and a bit more. Finding myself very emotional right now. Went to my 'mum &dad's' house today which i have tried t avoid alot since my dad lost the battle to psp in January, I have personally found it so hard going their as Iam expecting too see my dad but his not their. Soi always have my mum over to mine or go out. Today I saw my mum eating her lunch at the table on her own and it done me in to think everyday when i am at work thats what she does everday.I hate what psp has done to our family and especially the awfull s*it that my dad endured. However todya has made me feel I needto be stronger for my mum and go round their instead ofseeing my mum out of mum and dads house. I need to get used to seeing my mum in her place without dad. I dont want to but thats the reailty of life.

PSP is awful and i have a tiny amount of help=fullness through running the london marthon and raising just over 3k to hopefully go towards an even pain relieve cure or a something whatver that will help psp patients and doesnt get lost in the admin side of charities.

Keep strong for your loved ones suffering from thie disease qnd make sure you make the most of them and whatever they do, be patient, the poor sufferer cannot help what they do. They are a pain in the ars most of the time but hey dont regret them being apain in the ars! go with it its psp not the person you knew and carry on loving. xxxx

[jillannf6]

hi julie

what a sad time 4 u but u r right :It is important for the people left behind to have the suppor too (like your mulm)

and i know u will be there for her

love jill

xx

PS great that u have run thE MARATHON!!