Saturday, 20 May 2017

Phenomenal

 


  Here's to strong women. 

May we know them.  

May we be them.  

May we raise them. 

 

My maternal grandmother outlived my mum by 12 years.  For me, one of the most difficult phases in her decline over that period was when she regularly mistook me for my mum.  It was wonderful to hear mum's name but then I had to choose whether to accept the mistaken identity or remind her that her daughter had died, leaving her to momentarily grieve again.  

Lee's story

 

When I shared my fortycubed plan with Lee, she immediately pledged her support.  As a single mum Lee has raised three strong and thoughtful daughters.  When she told me her story, it became clear that she came from a long line of strong women but the menace of Alzheimer's Disease has tested them for generations. This is Lee's story.

'When I started thinking about what I would write for this blog I assumed it would be focused on my beloved granny Jessie, who was robbed of her sparkle, her magic and her character by this disease.  

I remember visiting her in the home.  My mum and I would tell anyone who would listen the stories of who she had been and what she had achieved.  I was startled by the different phases you watch your loved one go through when they have dementia.

What surprised me as I thought about this disease is the effect on the family, specifically my mum.  I don't want to to dwell on my granny's story.  Instead, I choose to remember her as a strong, sassy, funny lady. I want to share the story of how Alzheimer's Disease has affected those it leaves behind.  

For as long as I can remember my mum has lived under the cloud of Alzheimer's Disease.  She watched her mum struggle to care for her grandmother (my great-grandmother) who also had the disease.   These are the ladies standing together in the photo above (circa 1973).  I know she still feels the guilt heavy on her heart of not being able to look after my granny at home due to her marriage breakdown.

Mostly though it is fear.  She is living in fear; waiting for the disease to rear its ugly head again.  Every time she forgets a name; every time she walks into a room and forgets why she is there; every time her brain doesn't work quite as quickly as she'd like; there is a sense of panic.

Over the years my mum has researched all possible prevention techniques and we have discussed at length what we should do if she does get Alzheimer's Disease.  We've had these discussions just as she did with her mum and as granny had with her mum before us.

A few years ago out of desperation we finally got a hospital appointment to test for early onset Alzheimer's.  We cried before we went in.  We cried when we were told that no signs were present.  But she will always worry.  The experience of watching two amazing women destroyed by Alzheimer's doesn't leave you. 

When Jac asked me to nominate a charity as part of her fortycubed challenge, I chose The Alzheimer's Society. I want to help give hope to the next generation that a cure will be found. I don't want my girls to spend their lives in fear of the disease.'

Lee is hosting a table at the fortycubed Gala Dinner in October.  If you would like to make a donation please do so via this link.

 

The Bookshelf Analogy

 

 

To better understand dementia, a really helpful video can be found via this link on YouTube.