29 June 2017

Alternate world

It’s not easy to find respite from the anxiety and stress of supporting two parents with dementia. These days, only something really engaging will divert me from the constant worry, planning and problem-solving. I’ve always enjoyed science-fiction and superhero stories, though, and letting my imagination wander through these other worlds provides a welcome, albeit temporary, escape from my own.

One of my favourite television shows is Marvel’s Agents of S.H.I.E.L.D., which has great chemistry between the characters and also a nice line in humour. As I settled down to watch a couple of episodes from Series 4 a few weeks back, little did I suspect that a new storyline would bring dementia right back to the forefront of my mind.

A group of S.H.I.E.L.D. agents becomes trapped in something called The Framework – a computer-generated alternate version of the real world. While their actual bodies are held captive, they roam free in this virtual reality, living out different lives fuelled by false memories. Two of their colleagues, Jemma and Daisy, deliberately enter this reality to try to rescue their friends.

However, none of the agents in The Framework has any awareness that what they are experiencing isn’t real. As Jemma and Daisy try to explain the situation, they encounter a range of responses, from incredulity to complete denial and anger. One even challenges Daisy, ‘How do you know yours isn’t the fake world?’

By this point, I had begun thinking ‘Oh God, this is what it’s like for Mum and Dad!’

Mum, in particular, now lives in an alternate reality, which is essentially her life as it was 6 or 7 years ago. She has no idea that she has dementia and is convinced that she’s functioning normally and managing household affairs as well as she always did. Recently, when I gently suggested that her memory wasn't as good as it used to be, she tetchily replied, ‘My memory’s not that bad. You’re all talking me into it!’

So when she asks how I am and I say, ‘Tired’, she’ll respond, ‘You can always come up here if you need a break.’ Or if I mention that I’m busy, ‘Let us know if we can do anything to help.’ It’s sweet that she’s still fundamentally Mum, showing her old Mum concern, but the idea that they could provide either a rest or help is utterly far-fetched – and ironic, given that they are the reason for both my fatigue and having too much to do! All I can reply is, ‘Thanks, Mum, that’s kind of you.’

Image courtesy of Pixababy
My sister and I have to enter our parents’ reality, because we have no other choice. Even if we could persuade them of the truth of their situation, what would be the point? It would be cruel, hurtful and upsetting. Sometimes, though, I wish they did understand, even a little, as it would make it so much easier to persuade them of their need for more help. 

As so many friends have pointed out, though, ‘They’re happy in themselves.’ That can be hard to accept, however, when that happiness is based on a false premise. 

Which brings me back to Marvel’s Agents of S.H.I.E.L.D., where one character elects to stay in The Framework, because in there his young daughter is still alive. Although he has come to understand that this existence is not real, he prefers it to one devoid of his daughter’s presence. 

All told, this particular storyline proved to be anything but relaxing and diverting! 

Being forced to enter a dementia reality can mess with your own head a little. Every phone call to my parents necessitates playing a role to match their view of the world. Sometimes, talking to them, I’m almost persuaded that everything is back to normal. In conversation, Mum especially is still so articulate and bright and engaged, that it’s easy to believe there is nothing wrong with her at all. My having to act as if that is the case only adds to the illusion.

I also have to be economical with the truth on some subjects. Three months ago, I split up with my partner of 16+ years, but I haven’t told my parents because a) they’ll be upset, and b) they won’t remember and I’ll only have to tell them again (and again and again), so upsetting them over and over. 

Instead, when Mum enquires after him – Dad would never think to – I give her a report that is based on the texts and emails we still exchange and his personal and professional Facebook posts. Thank goodness for social media to help me create an authentic fiction of our now defunct relationship! So far, I’ve managed to maintain the pretence, without actually lying to Mum – ‘Yes, Mum, he’s really busy with work’ or ‘No, Mum, I’m afraid he doesn’t have time to visit you and Dad. In fact, I hardly see him myself.’ It’s surprisingly easy to say something and nothing at the same time.

I might have a bigger challenge on my hands if any future partner ever meets my parents. While we all change as we age – and they haven’t seen my ex for at least a couple of years – I’m not sure how I’ll explain a different ethnicity or a 4-inch height gain... Though who knows what their mental status might be by then – they might not even recognise me.

Thinking ahead to that prospect – which I generally try to avoid – I suppose, after all, the current situation isn’t as bad as any number of other possible realities. Or, at least, that’s what I keep trying to tell myself.


Lindsay said...

It sounds very difficult, Helen. I agree you need to support yourself and relax in whatever way you can to diffuse the load. Shame your chosen viewing didn't hep though!

Helen Barbour said...

Thanks, Lindsay. I must confess, my guilty pleasure of Dance Moms is also a good distraction. Reality TV at its best - and worst!