Real stories

What it felt like in the lead-up to my dementia diagnosis, and living independently afterwards

‘It was the best of times; it was the worst of times.’

It’s funny really (well, in the context of a dementia diagnosis it isn’t) but you never hear much about pre-diagnosis.

You’re always asked, ‘When were you diagnosed?’ That’s fair enough, but little thought is hardly ever given to that horrendous time before a diagnosis.

I have posterior cortical atrophy or PCA. It’s a type of dementia that affects the back of the brain which processes visual and spatial information. 

Other symptoms include light sensitivity, reading, spelling and problems with numeracy. All in all, it’s a rare old mixed bag.

Subtle changes and impacts

Now, start to imagine what my life was like pre-diagnosis when nothing made sense anymore. The Dickens’ quote I’ve used to open this article described my life perfectly.

I had been a business owner throughout my working life, the final one being a gallery I set up for local artists.

As a creative myself, it was to be the business that would see me through retirement. I’d be working in an environment I truly loved.

Have you ever noticed when things quietly change, you hardly pick up on them? 

For me when I look back, it was when I started to lose the ability to write with my left hand. I saw it as a nuisance so went on to teach myself to write with my right.

Up the down escalator

Things became more serious when I realised that lines on a page as I read would occasionally drop into the sentence below. I also lost my numerical skills.

From accounting to hanging the exhibitions, I managed everything in the gallery myself, but it was getting increasingly harder. Then, for some inexplicable reason, I would miss my footing on a stepladder.

It was now becoming a regular occurrence for the people across the hallway of the beautiful Georgian building, to come running in shouting, ‘Have you fallen?’ Yep, there was me in a heap at the bottom of the steps again.

There I was, trying to frustratingly understand why all this was happening. I was metaphorically shaking my fist skyward from time to time. What was wrong with me?

I questioned myself, ‘Am I in the early stages of dementia?’ All the symptoms were stacking up.

Get a grip

As if it wasn’t bad enough to have my world spinning more than slightly off its axis, the impact of others’ behaviours was devastating.

I was asked, ‘What’s wrong with you?’, ‘For goodness sake, get a grip!’, ‘Are you losing the plot or what?’, ‘You never used to be like this!’, ‘You are driving me nuts’, ‘You are endless’ and so on.

I’ve always been a glass-half-full kind of girl, but I found it was becoming easier to deal with my fears rather than carry on explaining to those who thoughtlessly threw these remarks around. Yet, I could understand their frustration.

Strange really, but as I sit writing this, I realise that some people were more interested in persistently criticising and comparing me to the person I used to be.

They weren’t concerned with finding out what the matter was in the here and now, and asking how they could help.

The catalyst was losing my numerical skills – I went to see my doctor.

Peace at last

How on earth can you find peace when you have a dementia diagnosis?

For me, it was a relief to understand the reasons for everything that was happening. In turn, this turned into positivity despite me being young onset.

My glass was suddenly half full again. I became inspired to do as much as I could to raise awareness.

I got involved with organisations and whenever I got the opportunity, I tried to promote better awareness.

I wanted to myth bust those incorrect preconceptions that surround dementia, such as believing that it’s an inevitable part of the ageing process. It ain’t. Far from it, in fact.

I also advocate wherever I can that more attention should be paid to pre-diagnosis. It’s such an important, scary and brutal period for everyone.

Part of finding my peace is helping others realise that you can have a life after your diagnosis, and a quality one too.

The trick is to recognise and accept where you are now.

So what if you can’t do what you used to? Life is still full of new opportunities. If there is anything that floats your boat, my advice is grab that tiger by the tail and go and do it pronto!

Art of self-management

I bang the drum for those who live alone and self-manage. It truly is an art. It’s also hard graft.

I’ve never thought about it like this before as I’ve always been seen as the queen of solutions (other folks’ words, not mine).

When I hit a challenge and work on finding that magical solution, there’s an enormous sense of achievement and so it inspires me to do more.

Some solutions, the successful ones, wah-hoo, I share. Others remain in the deepest darkness of the garden shed, where all the old pots are never to see the light of day again!

Seriously though, when you have to self-manage, you look at life in a completely different way and draw your strengths from deep within.

Empowering

It’s simple to manage strengths and weaknesses once you’ve acknowledged and accepted where you are in your life.

Recognise what you can no longer do and what you can do, eureka, that’s your starting point.

It’s critical to realise and motivational to understand that you are still in a position where you can do many things, enabling a good quality of life. Don’t underestimate what an empowering time this is.

It’s true you may not have immediate help at hand, but help comes in all sorts of guises. Just do a stocktake and work out what’s important to you and target where that help comes from.

Challenging assumptions 

Just as pre-diagnosis isn’t explored enough, there’s a lack of awareness about the number of people who are living alone and managing their dementia.

There is an automatic assumption that someone is caring for you. Many people have those who care for them right from diagnosis, but lots of us don’t.

I have good friends who live alone and do it successfully.

Shockingly, one who was told on diagnosis that, because he lived alone, he would have to go into a care home. Quite rightly he fought back. He lives a successful life with everything he needs.

Like me, he surrounds himself with gadgets, such as voice-activated smart speakers, which aid achievements, ensuring that we live a good quality of life.

Strength and courage

Sadly, there are misconceptions that self-management is easy to do. It isn’t.

You need strength, courage, no end of patience and above all a sense of humour. 

You have to be organised and prepared to fine-tune things. We are under the same pressures as those who are caring or being cared for.

I’ve had experiences in group discussions about carers’ hardships where I’ve felt the need to speak up for those of us who self-manage or live alone.

We are a group of people who are very much forgotten.

Life is not a rehearsal

I am pleased to say that many people respond well and say they’ve never thought about things from our perspective.

They now have the utmost respect and understanding for those of us who continually march forward, heads down trying to live our best life.

After all, it’s the only one we’ve got!