Diary of a Daughter and Carer

[AmyT]

Ive been writing a blog for a few months now and thought I would share...This was my first one posted a few months ago.

Its been on my mind to write something about being a daughter and a carer for some time now. I finally have the time and the inspiration to do it.

In August 2010 I gave up my day job in pursuit of a dream: to become a Children's Author. Although it was one of the most exciting and amazing times for me, it was only possible because my Dad needed a carer. My Dad was diagnosed with Progressive Supranuclear Palsy in 2006 after a good 4 years of not being well and a few misdiagnosed conditions later we were delivered the bomb shell that would be PSP. This is the definition of PSP in its simplest form:

Progressive Supranuclear Palsy (PSP) is a degenerative brain disease which affects eye movement, balance, mobility, speech and swallowing.

P - Progressive - the disease gets steadily worse.

S - Supranuclear - the area affected is above ('supra') the nuclei in the brain.

P - Palsy - paralysis

To families and people who are affected by PSP it is so much more. It means that we are losing Dad before our eyes. As the months turned into years we started to need more support (both practical and emotional) and advice about how to best care for Dad - it became apparent about 2 years ago that we would need someone to care for him full-time. Mum had been doing it for so long and felt that she needed a break. She had given up her job as an Accounts Manager for a publishing company so that she could care for her husband but now we all thought that it would do her good to get out of the house and work on an exciting project. ( You will get to know that if you have an idea in my family you follow it through to the end whether you succeed or fail)

So in August last year I gave up an office job I had had for around two years and went to care for my dad. We had asked him if he would like me to do it as he still remains a proud man no matter what difficulties he is faced with. He said that he would be happy for me to care for him and in fact, I thought the same. People often say, 'god isnt it hard to see your dad like that' I say - he's my Dad. We have always been a close family...Ive always said how amazing it is that we all get on so well and actually like spending time with each other, so for me it was a no brainer.

I think this blog will be more for me than anything else, a way of getting it out. He is in the latter stages of PSP now and with his deterioration comes new tasks for me. I feed him and take him to the toilet, I clean up after him and change his bed sheets. Thats my carer job. My daughter job is to be with him every step of the way, to hold his hand while he is hallucinating, to hug my mum when she can't cope any more and to laugh with him when we remember something funny. I talk to him always about what I am doing and how in fact I am now a Children's Author. He inspires me to achieve more and makes me feel proud to be related to him. He's the bravest man I have ever known and as I am now beginning to realise my dreams, I feel so grateful that he is able to do that with me.

This will be my diary but I want to share it with you, whoever you are.

[hmfsli]

Thanks for sharing.

[PSPA_HelenP]

This is such a touching post, you are lucky to have such a close family and to still enjoy your time spent together despite the challenges caused by PSP.

Keep approaching your role as a carer as positively as you are doing and thanks for the insight!

[ray-wiffen-1958]

Thanks for such a great post it just shows how inportment

family are, Ive got cbd which i came to terms with quite well

when i was told, i hope my daughters take care of me as well

as you are takeing care of your dad god bless you x

[Idris]

Thanks for sharing - I'm so glad you're seeing a positive side to your caring responsibilities. I did the same thing - gave up my job to be a full-time carer, which has the silver lining of allowing me to study and pursue interests I wouldn't otherwise be able to. Your Dad sounds like an inspiration, you're lucky to be in that family!

[jolefe]

I'm in floods of tears as I read your words. I lost my precious dad to PSP just over 3 years ago. It was such a painful time to witness the cruel disease take away my dad's dignity, freedom, speech and movement. He was diagnosed with Parkinson's originally but he had a fall and struck his head. Unfortunately, it turned out to be PSP and he rapidly declined.

He never complained even though life was unbearable for him. Your love for your dad is so obvious and I wish you strength for the hard times ahead.Kind Regards and best wishes xx

[PAT0]

you are very inspirational - thank you

PatO

[clara]

Hi Amy

Just wondered how you and dad are doing? 4 months on? I am the sole carer for my mum, so I empathise. Please let us know how you are coping. I have just bought a ground floor apartment for mum and I to live together. we will move next month, not a day soon enough, she is barely coping.

Its so devestating isnt it. I send you much love

Clara XX