Disconnected

Having said that we'd survived the storms relatively unscathed, our broadband connection has become loosened in the high winds so gathering emails and browsing the internet have been difficult for the last few days. Oh the joys of having overhead cables! Our telephone line is due to be repaired on 7th so it could have been worse. We only had a few large branches down in the fields but the horses and sheep were all OK.

Sadly, elsewhere lives were lost, cars crushed by falling trees and properties damaged, many people being without electricity for days.  We had a minor power cut at around 5am but the workmen got the village back online within a couple of hours.

Being without access to the internet made me think about how isolated we became when mum was suffering from dementia. At times it felt as if we were living in a bubble, completely separate from the outside world.

I also thought about how mum must have felt, unable to communicate effectively or to voice her thoughts and needs in a coherent way. Imagine how it must feel to be locked within your own world, alone with your thoughts and unable to explain what you are feeling. 

Whenever I talk about what happened to mum I always have to stop short of the final part of her life as it was just so awful that even typing these words brings tears to my eyes and a lump in my throat. I did try to speak about it once during a lecture but as I tried to enunciate the words I was completely overwhelmed and so I keep those memories locked away, for my eyes only.

My pensive mood brought to mind a very moving poem I read a few years ago which was displayed within a garden at St Margaret's at Cliffe.

The Old Man

There once was a man who wouldn't die,

He sat in a chair watching time fly by.

Longing for beauty, longing for youth,

He sat lonely and cold,

Silent and mute.

He had once been handsome, young and care-free,

Then he saw his reflection and what did he see?

His face was too wrinkled, his hair too grey,

But he clung on to life,

Day after Day.

But then in the town people stopped and stared,

At the ugly old man with thinning grey hair.

He moved blindly forward, tapping his cane,

He felt like a prisoner,

Clad in strong chains.

He wanted to move and see new lands,

Green rolling hills and soft yellow sands,

But he was immobile, his legs would not work,

He was a recluse in his chair,

Feeling solemn and hurt.

Still to this day he is living a lie,

Refusing to live, refusing to die.

He will not sleep for he may pass away,

He sits lonely and cold,

Day after day.

Local 13 year-old.

I bet you had to get your hanky out after reading that!  How incisive for such a young mind.

At the moment I'm busy blogging my 2nd article with thoughts about the upcoming G8 Dementia Summit but my first entry hasn't gone onto the site yet so I thought it would be interesting to read what Alistair Burns wrote in his blog post (just click on 'blogs' at the top of page). I met Alistair back in January 2012 at the launch of ARUK's Defeating Dementia report and it was good to read his views.

In the meantime, here's what I wrote for my first blog:

Having experienced the devastating effects of dementia on my own mother, whose story appears below, I was excited to hear that the UK is to host the G8 Summit on dementia. Since the Prime Minister launched his Dementia Challenge it feels as if we are finally starting to make some progress in raising public awareness about the disease.  However, investment in dementia research still lags behind other diseases whilst the financial burden has increased.

I am passionate about the need for research into the causes and possible treatments into the disease but I also feel a strong need to offer a better quality of life to those suffering from the disease already.  More and more I hear about people with dementia being left alone in their own homes, often having to contend with difficulty performing everyday tasks that once were simple but now are fraught with difficulty. 

In the very early stages of dementia, when perhaps objects are misplaced or someone struggles to remember words, then this might be acceptable but the thought of someone being left alone in a world that no longer makes sense terrifies me.  Recently Sussex Police launched an initiative for issuing GPS tags to dementia sufferers who were prone to wandering.  This was branded as “barbaric” by some but surely it is barbaric to leave someone alone to fend for themselves when clearly they cannot. 

The Alzheimer’s Society’s report ‘Building dementia-friendly communities’ highlighted how communities can help people stay in their own homes for longer and this has to be the way forward. I believe that my mother’s quality of life was enhanced by living with us in an environment where she was safe, secure and never left in a situation where she could hurt herself accidentally or become fearful.  At home she still had a role as part of the family, helping to prepare food, digging the garden, tending the animals, and helping with household chores which gave her a sense of worth.  She always enjoyed crossword puzzles and jigsaws and we encouraged her to keep doing them to keep her brain active for as long as possible. 

My hope is that the G8 Dementia Summit will be the start of a coordinated global effort to take action on dementia.  No single country has the resources to combat dementia but with teamwork we will; to use an often overworked motivational acronym, Together Everyone Achieves More. 

Peggy’s story 

At the age of 81, my mum had a series of minor strokes. Shortly after that we started to notice behavioural changes notably memory loss and confusion over everyday items. We thought it was just old age finally catching up with her. Then she started wandering and had extreme mood swings.  Although she already lived with us it became obvious that she couldn't be left alone for long and so I left my job to care for her. 

The next few years saw a gradual decline into the blackness that is 'vascular dementia'. My normally placid mum became violent and aggressive. She had psychotic incidents where she would see imaginary people (children hiding in her wardrobe, Russians sitting on the stairs, women stealing her clothes) and she would shout at them and sometimes throw things too. She was so convincing that we used to go and check that there wasn't anyone there! When my sister died during this time mum did not know who Judy was or that she was her daughter. The moment that I finally realised she no longer knew that I was her daughter was a terrible time for me. 

In the last 2 years that she lived with us, life for us all became almost unbearable as she needed 24 hour care; she couldn't be left alone at all because she would either wander off or hurt herself, she never slept for more than 30 minutes at a time during the night, she became incontinent and incapable of doing anything for herself.   

Finally we realised that we could no longer provide her with the care that she needed and she went to live in a special nursing home where the team did a splendid job caring for her in the final months of her life. There she lived a zombified existence unaware of who she was, what she was or where she was.  It was heartbreaking.   

During that time I started to learn more about dementia and found that research was vastly underfunded.  I also realised that people often spoke about it in hushed tones as, with so many forms of mental disorder, there is a stigma attached to it; as if the person has somehow brought it upon themselves.  I was so horrified by what happened to my mum that I felt the need to speak out about it and I decided that I would help raise vital funds for Alzheimer’s Research UK (ARUK) as I firmly believe that science and innovation hold the key to defeating the disease.

For my next blog post I'm writing about why I believe this international collaboration to tackle dementia is so important.