This is John's story not mine. I have never met him but know his family very well and have seen the impact that dementia has had on his and their lives.

Please take a few minutes to read his story told by his family and then please give generously to help try and fight this terrible disease.

John's Story

 

John was  Managing Director of his family Company and acted in this capacity until he became ill.  

 

He was a very sociable  and family orientated man who was extremely proud of his children.   He took particular pleasure in his grandchildren who he adored and  took every opportunity to play with them.  He was particular about his appearance and loved socialising. He was very much involved in committees both for business, charity and sport.

 

In 2003 John became ill.  He started sleeping a lot and getting rather forgetful.  A visit to the Doctor diagnosed blocked arteries and an immediate need  for a triple heart bypass.  This was the start of our  nightmare. 

 

6 months later he was diagnosed with dementia.     His whole demeanour changed.    He could no longer  speak properly.  He tried hard but the words just wouldn’t come out, leading to great frustration on his part. 

 

John was an extremely competent man who ran his own Company, a meticulous person with a great sense of fun and humour, he was  an avid reader and someone who loved sport.  This was all taken away bit by bit. 

 

He was no longer able to concentrate on the written word or on a  conversation unless it was on  a one to one basis and then, despite trying to take part,  the words no longer came ,  just a jumble of words and noises  and we had to second guess what he was trying to say or indeed what he wanted.

 

He loved going out playing golf with his friends but after a short while this had to come to an end as he could no longer  understand what he was supposed to be doing. His trips to the pub with his friends also had to stop as he would walk off  or get aggressive.  They tried to help out so that we did get a little break, but it proved impossible.

 

His greatest pleasure at this time was walking and he was able to go on the same route everyday along the seafront and with his homing instinct for a couple of years he was able to return home.  We did have some scary moments when he didn’t return and we had to go looking for him, but because we knew his route and he was quite well known in the area we were able to find him.  

 

Unfortunately, this pastime had to stop when he could no longer remember his familiar route or how to answer his mobile phone.  Fortunately on a few occasions a helpful passerby would answer it for him so we could come and find him.

 

After about 3 years he could no longer dress himself and look after his personal needs but had to be helped which really upset him as he was a very private person who took great pride in his appearance.  He was no longer able to use a knife and fork  so  his food had to be cut up for him.   He could no longer be left alone in the house because we did not know  whether he would go out and get lost or whether he would injure himself or  lock the doors so we couldn’t get in.    Everything became the unknown.

 

When his attitude to his grandson  changed and he became very aggressive towards him, we had great difficulty trying to make him understand that he had not done anything wrong and the change  was not his fault, he was still loved  as much, but that his grandpa was ill. His response was ‘I wish he could come back as he was before, he’s no fun anymore’.  As a family we had to watch helplessly as the loving man disappeared and  the dementia took control making him very aggressive and  extremely   unpredictable to us all.  He was no longer the fun  loving, humorous  man that we had known and loved but a silent morose person with no emotions - he still looked like John but he was  someone we no longer knew. 

 

He was now totally helpless and so, after much anguish, two and a half years ago, due to his unpredictable behaviour (especially believe it or not around the full moon -  I believe in the old days it was called ‘moonlight madness’) we had to give up the fight of looking after him at home.  It had become to dangerous.   Regrettably, we had to put him in a home. 

 

It  was an extremely difficult decision to make and it is still most  upsetting seeing him there.  He just sits staring into space  with no apparent emotions.   He  does know us and  occasionally we do get a smile and a glimpse of the old personality but this is very, very  rare.   We firmly believe that he understands what we say, but cannot respond as he has lost all communication skills and has no spacial awareness. 

 

We still try to take him out walking which he still enjoys and loves cream cakes and cappuccino’s at the local garden centre but it  very difficult to get him to sit down when he gets there  and he has to be encouraged  to do so as being forceful is not an option.   It is extremely stressful but we have to  keep going to in an attempt  to give him some pleasure in an otherwise monotonous existence.

 

Dementia is a very cruel disease.  It would appear to be affecting more and more people with no cure in sight.

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