Dementia-our journey a view from the other side Part 1

We are told there will be over 1 million people with dementia by 2021. Startling statistics. The financial cost of dementia to the UK was over £23 billion in 2012. (Alzheimers Society). One third of people with dementia are in a care home. In May 2013 my life changed forever. My mum aged 72 was diagnosed with Vascular dementia. Our journey began. As a health care professional my career started out on a ward with patients with dementia. Little did I know in 1978 what life would bring in 2013.  It started with depression and when this was diagnosed it took from May till September for anyone to seriously listen. Mum went from a size 16 to a size 6 in as many weeks. she actually stopped eating and drinking and she gradually deteriorated. It was only because I knew the system that she was admitted. Initially she was admitted to a lovely 6 bedded assessment unit in Scotland where she underwent many investigations. She had a Cat scan which revealed a past stroke (no one can date the stroke) and a pulmonary embolism. One junior doctor told me “the stroke is not significant” “if you look for anything you’ll find it”. To which I replied ” you are clearly mistaken and don’t know what you are talking about”. The staff and the consultant on the unit were fantastic and bent over backwards for us. She remained there for 6 months.

I asked for her to be discharged home in February and she was discharged the same day. We then began a journey with social services. This is where it gets worse. Assessment after assessment, social worker after social worker, CPN after CPN.  The social work department is the worst department ever. What a joke trying to get through to them. Passed from pillar to post. Eventually we get direct payments set up. Great I thought that would work. We recruited our own support worker for mum and she is great. Things deteriorated though and with violence escalating I simply couldn’t leave my father in such a vulnerable situation. We were told by social services and CPN’s “its domestic violence you must ring the police” My father would never shop his wife! How horrendous was that. It came to a final straw when I was on a train home from London and my mother was standing over my father with a knife. I cried and cried all the way home 4 hours on the train. Then they intervened! Next day I set the wheels in motion and demanded respite. At last. they were listening. She went into care at the end of May 2014. What a year of hell we have been through. 


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