30 December 2017

Let me entertain you

People with dementia often find it hard to keep up with their favourite hobbies due to increasing mental and physical constraints. My parents, for example, were both keen readers, but how can you follow a story, when you can't recall what you’ve read from one minute to the next? Likewise, the simple pleasure of losing yourself in a good television drama or film becomes impossible, when you can't keep track of what's going on.

One early indicator of the severity of Mum's memory problems was that she began relaying the same newspaper stories to us over and over again in the space of a few minutes. On one such occasion, a celebrity had died and it was clear from Mum's surprised tone of voice that, every time she told us this, it was as if she had just read the report for the first time.

Mum has always been a fidget and now occupies much of her time pottering around the house – mostly moving stuff to some place where nobody else can find it. She's oblivious to her condition and is convinced that she still manages everything as well as she ever did. This activity must, therefore, make her feel useful, which is a good thing, but it's not exactly interesting or stimulating.

She does, at least, love to go out for walks and is still safe to do so on her own, as she never deviates from the same short route, which is populated by kindly neighbours who know her.

Over the last 15 or so years, though – long before dementia struck either of them – Dad has become more and more of a homebody and less and less inclined to do anything outside of his normal routine. His one interest is listening to and watching sport. Other than that, he spends his days snoozing in his armchair, breaking off only for meals, his regular treat of a chocolate…and to go to bed!

Until the live-in carer moved in, however, my sister, Alison, and I could do little to improve the quality of our parents' lives. Any time that we spent at their house was devoted to bringing order to the chaos caused by dementia. Now that we're relieved of that responsibility, we have capacity to encourage them to participate in more activities.

Image courtesy of stevepb/Pixababy
Mum has always loved crosswords and word puzzles, but doesn't always remember to do them or, at best, half finishes them. So, on one visit a few weeks ago, I sat her down with the newspaper and a pencil and perched myself next to her, ready to help as necessary.

The idea that she might need help proved laughable. Every time she read out a clue, she followed it, half a second later, with the answer. My younger, supposedly more agile, brain hadn't even made sense of the clue, and she was already scribbling down the solution. 

It didn't help that she has a less methodical approach to puzzles than I do. She was picking out clues at random and not crossing out those that we (er, I mean, she) had completed. I had no idea where we were at until she came up for air a few minutes later, when the whole grid was full.

We moved on to a different kind of puzzle, where we had to make one nine-letter word from the letters in a three-by-three grid, and as many words of four letters or more as possible, all of which had to include the letter in the middle – 'g'. 

Barely were the words 'Shall we have a go at this one?' out of my mouth, than Mum said 'Fattening.'

'Sorry,' I said, 'what is?'

'The nine-letter word, it's "fattening",' she explained. 

By now, I was feeling like an absolute moron.

Doing the rest of the puzzle was more of a challenge. Mum came up with plenty of words, but not many of them had a 'g' in them and lots were only three letters long. I kept reminding her of these rules, but to no avail. 

I was also keeping a list of words that we had come up with, but rather than referring to that, Mum kept offering the same ones. 

'Have we got "gate"?'

'Yes, Mum, it’s on the list, look.'

A moment later…

'What about "gate"?'

'Yes, it's here, see? Second on the list.'

Two minutes later…

'Ooo, I've got another one…"gate".'

Alison subsequently – and quite sensibly – pointed out that it would probably have been better just to let Mum come up with words, whether they had a 'g' in them or not, and whatever length they were. The point of the exercise, after all, was enjoyment and mental stimulation. I'm a very rule-driven person and it simply hadn't occurred to me to bend those supplied. In fact, with dementia, you might as well throw every rule book you have out of the window.

As an example of that, later the same afternoon, I found myself having to talk Mum through writing the family Christmas cards, literally word by word. The brain is, of course, a complex organ, and dementia a complex condition, but it was hard to reconcile these two versions of Mum – the word whizz and the person who couldn't write a Christmas card on her own.

Image courtesy of Pexels/Pixababy
The most successful activity I've tried so far is watching old music DVDs with both of them. Singing and listening to music are known to be beneficial to people with dementia, but I had never tested this before. We began with a John Denver concert and it wasn't long before I found myself witnessing something akin to a miracle. 

Dementia has exacerbated Mum's natural restlessness and she usually can't sit still for more than five minutes. As she became more and more engrossed in the show, however, she seemed to lose any inclination to shoot off and do nothing in particular somewhere else. 

As for Dad…well, he actually stayed awake for nearly an hour and a half, eyes glued to the screen. He even chipped in occasional comments, such as 'He died in a plane crash', and 'We saw him at the NEC'. That might not sound much, but he rarely initiates a conversation – or, indeed, even answers questions put to him. To see such involvement was amazing, especially after he had declared he 'wasn’t bothered' about watching DVDs.

As I cuddled next to Mum on the sofa, with Dad nearby in his favourite armchair, I struggled to hold back tears, knowing that this was a memory I would always cherish.

When I got home, I researched John Denver online and was spooked to realise that the concert we had been watching was actually the one Mum and Dad had been to, in May 1986 – probably the reason they had the DVD. The idea that my 'real' parents, my pre-dementia parents, were in that audience was disconcerting. If only I could reach into the screen and pull them out…

On my next visit, I got out the same DVD, so that we could pick up where we had left off. Of course, Mum and Dad had no recollection of having watched it before. 

'We could just start from the beginning?' Mum suggested.

I persisted in fast-forwarding, fearful of otherwise becoming trapped in a Groundhog Day type scenario, in which I'd never get beyond 'My Sweet Lady' on the set list.

A few songs in, Mum turned to Dad, her face glowing, and said 'This is good, isn’t it, Georgie?' He gave a silent, but very firm nod in response. That simple exchange made for one of the best moments of my year. 

For the last 16 months, Alison and I have focussed solely on ensuring that our parents are safe and comfortable. Knowing that we can also still bring some actual pleasure to their lives is immensely rewarding. I only wish that they could remember and treasure those moments as I do.

Wishing you all many happy and memorable moments with your loved ones in 2018.