My story

[JoC]

Hi, my name is Jo i registered afew days ago but have not yet posted because i have been reading everyones terrible stories.

My Mum died 3 years ago from Alzheimers, she had the genetic form, known as Familial Alzheimers. I am 24, i have a sister who is 28 and a brother who is just coming up to 23. My Mum was 43 when she died and had been suffering from the affects since she was about 36.

When i was 17 i left education to take care of her - my Dad did the whole 'if i bury my head in the sand it'll go away' trick. This meant that she was not diagnosed for 6 months after this. Even then it took several letters from my aunt and a change of doctor before they even did a brain scan!

I took care of her for a year, but she became so agressive with me that it was difficult to be in the same room for any period of time. Luckily she went to a home which catered for young people with dementia, which was also 5 minutes away in the car. After another 12 months she became too aggressive to remain there and had to be admitted to a Psychiatric ward - which was not pleasant!

The staff were brilliant though and we got the best bits from her. When she died we were all there with her - the nurses were sobbing with us! It has been a very long and painful period but as time goes by the bad bits are harder to remember!

 

[Brucie]

Hello Jo, welcome to Talking Point, and thanks for telling us about your Mum.

Although people have talked about Alzheimer's patients being as young as in their teens, your Mum is the first person I have directly heard of at an age as young as 36.

It is tragic for someone so young to come down with this, and for you to have been affected so much, at such a young age.You clearly have done a remarkable job, both in doing the caring, and in managing your Mum's care after it became too difficult for you.

The 'head burying' routine is a common one for a partner and of course it really doesn't work for anyone.

I'm glad the bad bits are beginning to fade for you. I hope you can begin to re-build your life now.

Best wishes

 

[debby]

jo your words have given me a strength to carry on looking after my partner at home thank you for letting me and others know that there is smiles and tears and life after this look after your self and your family,give your dad a hug my partners mum is doing just as your dad did and hiding from it all i give her a hug she can hide but i feel better knowing im not and your words have given me more strength thank you be good to your self love debby

 

[deborah sian]

Hi everyone

I only found this site yesterday and have cried so much. Mum died 2 years ago and reading all your stories just made me realise that I was not alone. All you hear about are people with Alzheimers 65 plus and I got so angry, Mum died aged 54 she'd only been diagnosed 2 year earlier she seemed to just slip away before my eyes, she was just a shell and the strange thing is her mum is still alive, nan could never accept that mum had Alzheimers and never will.

to be honest reading your stories has helped me grieve I think I've kept so much in because I never really had time to accept it either, whats the saying 'its good to talk'

I wish you all well and just try to remember all the good times when things get hard

luv
deb xxxx