The Diary of a Daughter and Carer #2 (written in Feb 2011)

[AmyT]

Sometimes things happen to you during the average day that make you realise how lucky you are. I was taking the dog for a walk today, she’s an old girl now so we always go the same short route, through the church yard at the end of our road. I always (whether it’s a conscious thought I’m not sure) look at the part of the grave yard that is dedicated to children. I know this sounds morbid, but it’s not my intention. It always looks so colourful in that space, people put flowers and teddy bears to mark the place where their little loved ones are. It always reinforces the fact that there are people in this world who are worse off than me.

Dad was such an active force in my childhood, I think we both helped each other out…sometimes it was me and him against Mum – not in a horrible way but we were like a team. He always encouraged me to use my imagination to open me up to other worlds and imagine that animals could talk and what they would say if they did. I think the key was the fact that we actually liked each other…we were best of friends, partners in crime, much to Mums amusement!

And that’s why I am giving him some of that back now. Because he gave me so much as a kid, and as an adult I want to make sure his last however long is as much fun as possible. I always tell him about Ping and Pong and whats happening, he loves it. Because of Progressive Supranuclear Palsy, he finds it difficult to show his emotions so whereas perhaps if he didn’t have it he would say ‘Im so proud’ he can’t say that. I know that he is but sometimes you just want to hear the words.

He has had another nasty fall over the weekend and has cut his back to shreds. He says he doesn’t know when or how he did it and when you ask him if it hurts he says no. It must hurt. He is now eating his breakfast in the living room, watching the kind of day time TV shows he would have made us turn off as kids. He can’t read and write any more and he just has no interest in anything other than sitting in his chair. I think we try really hard to keep him going…there is always something going on in this family whether its Mum and her shop or me and Ping and Pong or my sister who is training to be a nurse…we try really hard to make it as lighthearted as possible but in private we often fall apart. We have each other, I have my amazing husband Dave but sometimes, when I walk through that church yard I am able to acknowledge that although there are people in the world who are worse off than us, our situation is also heartbreaking. Its hard not to get angry and say why us? But there’s no point in having that thought for very long. It is us, it makes us who we are, it makes us fighters and carers.

[Ross1]

I know what you mean as I ask me and my family the same question, why us? My mum is almost at final stage of the disease and hardly moving or speaking let alone showing emotions... She lives in Italy with my family and they are looking after her, I go every couple of months and last time I was there I wasn't even sure she realized I was there until I hold her hand as she was holding mine very firmly and wouldnt let go.

The horrible thing of this disease is that who suffers from it is not able to move or communicate but they still understand what’s going on around them

Yes we feel angry but we can say that we love her and we had happy times and she made us what we are now as she is a great mum and she always will

[Kathy]

Just had to say how your post resonated with me.... particularly the part about day-time TV! Mum wouldn't have been caught dead watching day-time TV before this wretched illness took hold. Sometimes that's the hardest part - knowing how active she was and seeing what she's become now.

[Fiona_McL]

My mum has the radio on all the time. She can't really watch TV anymore, but has always liked the local radio station. Sometimes we can make out a word here or there, but most of the time it's a struggle. She's in hospital at the minute and the staff have had real problems with that. There's always a new challenge with PSP!

'It is us, it makes us who we are'- I like that.

[jillannf6]

hi amy

i have psp-can sitll get out

but

i am watching soaps too - never would have in the past - but it does not matter as my dad at 89 watches them (he is still well) and i cna keep up with him when he wants to chat about them (tha t is my excuse)

Jill x

[Rosemary1203]

Hi Amy,

My mum has CBD, she does exactly the same - watches TV all day and gets quite agitated if she has a visitor and she missing it! Her speech is getting bad and she is finding it really hard to put sentences together, but the most upsetting part is that she knows that this is happening and is so frustrated that she cannot even switch the telly over some days.

We take her out as often as possible but our trips are getting shorter. We lost dad suddenly in March this year to cancer and I do the same I look at the children's section as it is so colourful and gives a little reality check. I try not to be sombre but on my own sometimes this is very hard.

Take care

Rosemary