the diagnosis.

If you’ve been following the blog for a while now, you may remember a couple of subtle references to my mother having regularly found herself amidst a dark cloud of depression from time to time over the years.

The truth is, that was somewhat of an understatement. But before I explain this, I first want to preface this particular blog with a couple of things.

My mother has always been more intelligent than anyone I’ve ever known. She was imaginative and creative, and would combine an encyclopaedic knowledge base in every aspect of her life. University at the age of forty-two, while it ate almost every moment of her life, was one of her biggest achievements. And with a GPA of 6.99, she had stepped into the world of teaching completely in her element, having changed the direction of her life with ease.

As kids, she would give us a new word to learn each week and challenge us to use it in a sentence within the seven days. I happily incorporated words such as “discombobulated” and “sycophantic” into my vocabulary from the age of ten, and I like to think this is one of the ways she shaped my own academic ability greatly.

I also get my creativity from her. My school projects were always injected with a large dose of my mother, and whether it was a giant Model-T Ford replica made from cardboard and electrical tape, or a Florence Nightingale lamp made from last night’s Chinese takeaway box – I was never short of having something amazing to present. This inherited creativity is something I’ll always be so thankful for, it’s opened new horizons at every season of my life and I know it comes from her.

My mother is kind, and loving, and in my many rascal-years she still would move heaven and earth to look after me. She was the kind of mother who equally balanced as a best friend and a guide for life, and she taught me how to be strong in the face of hardships. Her determination, passion and fire for the things she loved seeped deep into my soul over the years, and while I’m more like my father in many ways, at heart, I’m a lot of my mother when you really look at me (something I think makes her eyes sparkle a little more every time she sees it in me).

We used to think the stress of University would go away when she finished her teaching degree. After all, stress and University are a pigeon pair to many extents. There were nights where the pressure my mother placed on herself to achieve high distinctions would become so much that perfectly published textbooks would find themselves with pages partially torn, scattered on the lounge room floor. There were many tears, and moments of self-perceived failure; but when she graduated we felt this stress had all been worth it.

But the stress didn’t fade, and in many ways, teaching – although it was a tailor made fit for my mother – only exacerbated it.

For about seven years, I watched my mother grapple with her own self-doubt and feelings of failure – even if I could never see it from my own point of view. Stress would turn to sadness, sadness to depression. And each time she entered the ring with the big black cloud, it would take a little more from her than the time before.

My mother, as wonderful and as inspiring as she is, could never see herself the way we could, the way her colleagues could, the way her students could. To everyone else, she was nothing short of enlivening. A brilliant ripple in a big ocean. But she could never see it. And so tears became more expressive, and clouds of depression would anchor my mother longer each episode.

I think as a seventeen-year-old, the feeling of helplessness was never more than reading a suicide note drafted by my mother in one of her darkest moments. She had been sad before, but this was the first time she had made a plan and come close to executing it.

We didn’t lose her that time. For whatever reason, she decided to come back to us. And we spent the greater part of the next two weeks nursing her back to a better frame of mind with professional help and more love than I’ve ever given.

I always struggled to understand how she could never see her own greatness. How she could achieve something as amazing as a GPA of 6.99 and instead focus on the 0.01 she didn’t attain.

But that’s the thing with mental health. Unless you’ve been there in their very own mindset, you’ll never be able to comprehend what drives these thoughts.

Over the next ten years, we watched suicide episodes become more frequent. We watched the stress translate into an inability to cope at work. And we watched my mother fall out of love with learning and teaching.

We trialled various anti-depressants, and psychologists. We supported her in every way we could, but we never found a solution as such. Temporary fixes would always unravel eventually, and we would once again feel insignificant in a fight against the black cloud.

After ten years, my mother started to become forgetful – only every now and then, and usually over small things we would laugh off with a joke about old age. We put it down to a constant exposure to a stressful environment, and medical professionals agreed.

After a while, living in a permanent state of stress impedes the brains ability to hold linear thoughts and misconstrues pathways to long term memory. It made sense. Besides, even in the latter days of this new forgetfulness, the CTs and the MRIs never showed anything. It had to be psychosomatic- there wasn’t another explanation.

But despite stress leave from work, months at a time, the forgetfulness didn’t abate. I remember trying to help my mother find a file on her work laptop one weekend, only to submerge myself in a rabbit warren of files and documents haphazardly saved in locations that made no sense. It was the first time I think I realised that this thing, whatever it was, was more than just stress.

Then one day, after weeks of submitting documents to the wrong teachers pigeon holes, and mistakes made on marking papers – a breakdown in her classroom resulted in my mother leaving school abruptly. She never went back.

Her behaviour was so poorly understood by her colleagues that my mother never felt welcome back at her school or job. Naturally, they couldn’t understand why doing her job was so hard and unnaturally, acted somewhat more like their own high school students instead. It hurt my mother more than I think she could ever describe.

We managed to have long term illness paid out for my mother on the grounds of mental health, which at the age of 50 was necessary as she could no longer work.

Progressively, the forgetfulness became worse. We couldn’t put it down to stress anymore – there were no stressors left. My mother started to forget little things at first, like dates and important events. But eventually, she started forgetting bigger things too, like turning up to appointments, how to brake in the car, how to make a sandwich. And we became even more concerned.

It took us two years to find our answer. In June last year, at the age of 52, my mother was diagnosed with Severe Early Onset Alzheimer’s Disease.

It was a bit of a shock to us all. Even if we had a family history, it felt altogether far too soon for my mother to have it.

The doctor was thorough, and made sure we had all the answers we needed. But in a phone call with my father, the harsh reality of a 10-15 year life expectancy from diagnosis was crushing.

Already having lost so much of my mother and her brilliant mind, the thought of this worsening at such a fast rate made us feel helpless – more so than ever before.

They say that watching someone you love battle Alzheimer’s is like losing them twice. And it’s true. The first time you lose them, it’s their mind you grieve for. The person they were, it disappears a little more each day, sometimes only realised in hindsight. And you crave, almost beg, to rewind just a little bit so you can have that one conversation again, or that one moment where they can be the person you’ve always known them to be.

The second time you lose them, it’s physically and for that I’m yet to grieve.

In the last year I’ve really struggled to come to terms with this trajectory of loss. On a very selfish level, I’m not ready to lose my mother – if you ever really are. And I already have lost so much of who she is, how am I supposed to stand by and watch this fade more? How can I be a nurse and not able to help? It’s infuriating, and it often reduces me to tears.

I’m not married, and I don’t have kids yet. And I’m scared these moments won’t be remembered by her when they happen. Already she’s not going to be able to look after her grandchildren independently and this breaks my heart because it’s everything I know she’s hoped for her whole life.

But then I stop thinking so selfishly and realise this is so much more impacting upon my father who is losing his companion, and the love of his life. Part of a pair of empty nesters, who is slowly losing his person to bounce ideas off of and grow old with. His whole future has changed. And as I watch him make the transition from husband to carer, my heart aches for him.

You always know inherently that Alzheimer’s disease is awful, but you can’t really understand just how awful it is until it’s happening to someone you love. And it is truely one of the hardest things I’ve ever had to face, tenfold for my parents.

I wish I could find a silver lining in this one. Perhaps it’s that we now have an answer…but even that feels entirely short of being a silver lining. I already miss so much of my mum.

So I’ll leave my thoughts here with an unoriginal sentiment that has become central in my world over the past year, and that is to cherish every moment.

I purposefully savour every embrace, every smile, every word. Because as a nurse, I know what Alzheimer’s looks like at the end. And above all, I want a multitude of special memories to outweigh anything this disease can throw at us.

Don’t wait until tomorrow to do the things you love, or to be with the people that make you happiest. Life is fragile, bold and tangled. But it should never be taken for granted.

d x