MEDIA PANEL VOLUNTEER - ALZHEIMERS SOCIETY & AGE UK
I grew up in Sanderstead, Surrey, with my Mum & Dad and little sister Helen. We lived in a bungalow with a huge garden, and Mum & Dad grew all our own fruit and vegetables. Of course - not appreciated at a young age - especially when spinach was on the menu and Sunday lunch required a vast amount of shelling of peas and topping and tailing of gooseberries before any food reached the table!
My parents were not well off, but we had a lovely life. Dads priority was a good education, and having decided the local secondary school was not to his liking, he paid for us to go to a private one. I loved it, and like to think his money was well spent.
I have three grown up sons - of whom I am very proud, all with lovely partners - plus a collection of wonderful friends - some quite recent and others going back as far as 50 years.
This web-site is dedicated to my husband Jim - who died on the 24th June 2008 - following a long battle with Alzheimers - and to my Mum who died on 7th March 2015 after living with dementia for 13 years.
Jim was a Scot, from Stirling - with a Burns night birthday. He was a very good golfer, and at one time had a handicap of +2.
He studied Economics and French at Dundee University, but was ‘called up’ six months before he took his finals. He spent four years in Europe during the 2nd world War, and on his return had to start his Uni stint all over again. His hard work was worth it - he spent the next fifteen years working in West Africa for Unilever, as the General Manager of the West Africa Company.
We moved from Wokingham to Eastbourne in February 2001- to be near my sister and her family, and as much as Jim loved living by the sea, he became increasingly confused and lost. We were going to my youngest sons 30th birthday party in October 2002 - Jim kept asking where we were going and why, and that night it hit me - I just knew what was happening, and he was eventually diagnosed with Alzheimers in January 2003.
In January 2004 - we arranged a surprise birthday party for Jim - his face when he saw a piper walking down our road was unforgettable.
For a while we managed quite well, but then Jim had two minor strokes, and spent two weeks in hospital. He went in walking, talking - and fully continent - but was passed through four different wards, sedated to keep him quiet, then put in a side room and quickly became completely bedridden. Fearing for his safety - I discharged him - and my great friend Julie, from Peterborough, arranged to take a weeks holiday to come and help me. The day before she was due to arrive I received a call from her daughter to say her Mum had just been killed in a head-on car crash.
TRAGEDY: Mum-of-two died in horror head-on crash .
Published Peterborough Telegraph
“Mother-of-two Julie, of Abbey Place, Thorney, near Peterborough, was on her way home from feeding her horses which she kept at a farm on the outskirts of Whittlesey, when the accident happened.She died at the scene before emergency services could save her. Her pet dog, Kizzy, was also killed in the crash.”
and for the next eight weeks I was completely housebound and in a state of shock - trying to care for my husband who could not stand - climb the stairs - nor get to the bathroom.
There were no referrals made nor any official help offered - until another friend arrived - complete with her suitcase - and in total disgust took over my phone. Her Dad had Alzheimers - she knew the ropes!!!
Suddenly Social Services were involved, carers organised, a stair lift ordered - and from then on my life revolved around getting the best possible care for Jim - and the associated battles. The Social Worker we were allocated was an absolute treasure.
I fought with many agencies over the quality of care - and it didn’t make me very popular at times, but my only aim was always to keep Jim safe and at home.
I did manage that, and he died very suddenly in his own bed early one morning - the 24th of June 2008.
Caring for someone with Dementia / Alzheimers is very very hard work, and a lottery as to what help and advice is received. One thing is for sure, it doesn’t usually come knocking!!! A vast amount of stamina, and help from friends and family are essential, along with a determination not to give in to bureaucracy.
Sadly my Dad died in October 2004, and my little sister died from cancer in 2007. She was looking after our Mum - who then spent the rest of her life in residential care.
After my Jim died - The Alzheimers Society very kindly invited me to become a media panel volunteer - this means I am still involved - and can now help with the fight for improved care for all those like him and my Mum - the following are just a few examples of what I have been doing.
One issue was dealing with some very unkind and mocking comments about residents - posted on face-book - by three carers working in a local residential care home. They might have been letting off steam - but that should have been done in private. Other homes are now including this subject in staff training - a good result.
My interview about care costs, and I am now also helping with the Alzheimers Society campaign for better hospital care for those with dementia.
My role as a media panel volunteer for the Alzheimers Society and the release of my video on their website.
26th October 2010
An amazing day in London - I was asked to speak at a DOH / Alzheimers conference about hospital care -- thoroughly enjoyed it and had great support from Tanya @ Bay House and Louise @ www.alzheimers.org.uk - it helped a great deal to have a couple of familiar faces in the audience.
On the 2nd July 2011
I did a sponsored tandem sky dive for the Alzheimers Society - and was delighted to raise £1230.00
13th July 2012
Hove Lagoon - promoting the Alzheimers Society Brighton memory walk on Saturday 22nd September.
Photo shoot with Morgan - of Age UK - for a project re residential care costs. At Feb 2013 Mums costs reached £222,000 - and she was finally granted full NHS funding.
Carers Week in Parliament with Age UK --- discussing with MP’s the problems of carers - it was a fascinating day.
January 2015 - My Beach Interview with the BBC
7th March 2015
My lovely Mum finally lost her 13 year battle with dementia - and peacefully went to sleep forever - with her gorgeous carers holding her hands.
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