Wednesday, June 07, 2017

Living with Alzheimers

This post has been rolling around in my head for quite some time; It seems odd on the one hand to post it in amongst entries on makeup and other light-hearted subjects, however, it seems equally odd that I haven't posted about some of the important and life-changing events that go on in my life behind the scenes.  It's hard to write about the things that are so personal - it makes you vulnerable:

Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.”
Brené Brown

So I guess, I'm hoping that this blog post, will in some small way, try to shed a little light for me, for others, on the darkness that can come with a diagnosis of Alzheimers. 
The last few years have been extremely difficult.  There, it’s said and out there now.   Three years ago, in the space of several months, my sister was diagnosed with breast cancer and my mum with alzheimers and in the wake of these events my dad had a breakdown which ended in two 7 month hospital stays.  It hasn’t been easy for any of us.  Alzheimers sort of crept up on my family…for several years before mum’s diagnosis we noticed things that weren’t right.  Yes, she forgot things, but it was more than that; she found it hard to manage her spacial awareness, her night vision was totally skewed, she had mood swings and huge anger surges that couldn’t be explained away.  As a family we worked extremely hard to get professionals to take our concerns seriously – numerous ‘off the record’ conversations with her Dr and over and over we were told she was ‘fine’.  We were given all sorts of excuses – she was depressed, she was too busy so wasn’t concentrating and therefore wasn’t making and storing memories correctly; it was her diabetes .. and so on. 

This scenario continued for over five years.  It was only when we became so distressed about her declining working memory that they agreed to test her.  I remember the call that literally changed our family dynamic forever.  I was sitting at the kitchen table and I wasn’t even particularly worried, convinced that yet again, we would be told that it was something else or fobbed off with another excuse.  First of all Dad came on and all he said was that mum wanted to talk to me.  Mum was straightforward and direct ‘I’ve got Alzheimers Sair.  Now I know why everything is falling through the holes in my brain’.  We cried - a lot; we tried to reassure each other as a family, but the reality is, with this disease there is no ‘getting better’. Ever.  Just a decline and a loss of the person you know, a loss of their own sense of identity and a loss of their roles in their own and others’ lives.  My mum faced her diagnosis head on.  Initially she refused to let it dominate her world and her favourite phrase was ‘use it or lose it’.  She managed to live on her own with some support when Dad had his first hospital stay – but it wasn’t ideal and we worried daily about whether she was ok – was she lonely? Was she scared when she woke in the night and momentarily didn’t know where she was?  We blundered through the next few months, making adjustments, both practical and emotional.  Alarms on the doors that went off if she tried to leave the house after 9pm (difficult when she’s a smoker and likes a last cigarette before bed!); meals that were delivered and put in the freezer as she gradually lost the ability to remember the sequence to make even the most simple of things; neighbours and wider family kept an eye on her and we split our time between being with her and visiting my dad in hospital.  Living in London meant that I spent many weekends on the East Coast train line winging my way between London and the North East.  When Dad came home things went back to a sort of ‘normal’ and desperate to believe that things would be on an even keel for now, we tried to go back to our daily lives.  But Alzheimers is sneaky like that.  It lulls you into a false sense of security, as you register, that things have stayed the same; that there doesn’t seem to have been a deterioration for months, that the latest memory test score was better than the previous one.. and then… bam it’s back with a vengeance, laughing up at you with the innocent phrase ‘who are you? Do I know you?’  or ‘There’s been a gentleman here all afternoon talking to me, he’s very nice but I don’t know who he is’.  It was her husband of 53 years.  This disease is savage and relentless in its pursuit of obliteration of all that makes us human.  So, how, when faced with such devastation of the human personality, how do we even begin to find a path through the pain and start to find the positives?
The one person throughout it all who has managed to do this?  My mum.  She has refused to let it dominate her every conversation; she's learned to laugh about the memory lapses and the 'made up ' words as she now struggles to remember the real words for objects and situations.  She yearns to be back in her home, pottering in her kitchen, having a wander in the garden and free to leave the house whenever she pleases.  More recently, this yearning has transposed into frustration and sometimes anger that is heart breaking to witness. Heart breaking. We want to make it better.  We can't.  But still she struggles on - trying to live her life in the best way that she can.

Are there any upsides?  I struggle to find them, I really do; but pushed to do so, I'd say that it's made us all, family and friends, so aware that life can change on the flip of a coin.  It's made us love and appreciate each other and overlook the small niggles.  The thing that I love the most?  My mum may need the attention you give to a small child, but she now revels in experiences like a small child.  Watching her eat an ice-cream, or walk in the garden, greet her grandchildren or feel the sun on her face.  It's sheer joy.  She may have become a child, but the childlike abandon for pleasure has come with it and we could all do with learning from that.  She is a living, walking example of 'living in the moment' - it's all she has.  She can't remember the past (not even seconds before) and the future is uncertain, so the present moment has to be revelled in, savoured and rolled around like a truffle on the tongue.

So, how is it now?  She struggles to walk as her vision is drastically impaired (the neurons aren't transmitting the right messages anymore), she often can't find the right words to describe things, she 'sun-downs' (severe confusion in the evenings) every night and is often extremely distressed when she wakes in the mornings.  Dad is there throughout.  He's not well himself, with a diagnosis of Parkinsons with Lewy Body Dementia, but nothing, nothing will move him from her side; not her anger nor her confusion.  As he recently said to me 'if she's not here by my side, I don't feel right'.  That truly is 'for better, for worse, for richer, for poorer, in sickness and in health'. 

All my life my parents have been a guiding light; there for me through life's ups and downs and completely and utterly supportive of all that I have done.  They continue to be my role model, even through their own traumas.  For now it has to be enough for me to ring up in the evening and to hear my mum's voice on the phone asking me how my day has been.  I've learned to take a leaf from her book and to live in the moment, laugh along with her and share her pleasure, because the moment is all we have.

So, vulnerability?   as Paulo Coelho says,

"The strongest love is the love that can demonstrate its fragility.”  We may be vulnerable, we may be fragile, but our love is strong and it's ours to keep.