Walking, wandering & dementia

Since his fall, my father has been in a wheelchair, and he doesn’t seem to know how to start walking again. The messages just aren’t getting through from his brain to his legs, even if he wants them to.

I googled it, and it turns out this is not uncommon in the later stages of dementia. Another difficult progression I hadn’t anticipated. I had noticed that some of the residents in the care home use walkers, and a few seem to be bedbound, but I suppose I didn’t realise it would happen to us. I assumed they might have had other physical conditions.

My father has always been a great walker – fit and healthy for most of his life. He walked the Pennine Way when he was younger: 268 miles stretching from England’s Peak District to the Scottish Borders.

He dragged the three of us children up many a mountain – holidays in the Peak District, the Lake District, the Yorkshire Dales, and Snowdonia, or just walking in the nearby Kent countryside. I’ve walked with him too as an adult.

What I wouldn’t give to be dragged out for a walk again with him – up hill and down dale, come rain or shine, pausing for a Ploughman’s lunch: crusty bread, a hunk of cheese, and the sharp tang of pickle. Dry-stone walls and kissing gates, fellow ramblers greeting you – a surprise when you’re a Londoner trained not to meet anyone’s eye.

He had a great sense of direction, my dad – something I haven’t inherited, sadly. He always had a sense of where north and south were. He could just glance at a map in the morning and find his way through the day. No staring at Google Maps and walking round in circles to see which way the arrow is pointing for him. For the Pennine Way, he just used Wainwright’s handwritten companion.

They say drivers of London black taxis create new pathways in their brain from doing “The Knowledge”, a test of the geography of London’s roads. How many pathways would my father’s brain have had from his ramblings? Even when he drove, he’d just occasionally glance at an A to Z, head in the general direction, remembering streets that all looked the same to me.

When he retired, he organised walks with other retirees from his work, always planning a nice pub for lunch, just like on our childhood holidays. They completed the London Capital Ring Walk – 78 miles divided into 15 sections, exploring our incredible city. He sent off for a certificate, which he had framed and put up on his office wall – walking was like his new job now he had retired from his old one.

It was on one of those walks with his friends that he had a fall. His balance was off. It had been off for a while, and he’d started to stoop. That was the first sign that something was wrong, and the beginning of the long path to his dementia diagnosis. His walk gradually started to become more of a shuffle.

Now, we’re realising that he may never walk again. That this wheelchair is not temporary. That one day, it might just be the bed – or the end. How do you come to terms with that?

When his dementia started becoming more pronounced, walking became one of the main things I did with him. I’d take him out whenever I could for strolls around our local parks in South London. It was easier to talk to him as we walked, commenting on what we saw. His words and ability to hold a conversation were already beginning to fade.

At the same time, walking became a source of great worry. “Wandering” is the gentle term used for those terrifying moments when someone living with dementia walks off, unaware, and you don’t know where they’ve gone.

He would always leave his phone behind. My brother, who was living with him at the time, would run out into the streets looking for him – hoping he was okay, hoping kind strangers would help him (and often, they did).

Once, he even managed to hail a cab and head into town before the driver realised something wasn’t right and kindly brought him back home. If that cabbie hadn’t been so decent, anything could have happened.

Eventually, my mum had to start locking the front door and keeping the key so he couldn’t let himself out. No matter how gently we explained it, he didn’t understand – and who would? Imagine being locked in by your family and not knowing why. He tried to leave so many times.

Even now, he sometimes tries to leave the care home with me when I visit. It’s heartbreaking to ask one of the nurses to help hold him back while I take the lift down and walk out into freedom.

And yet, what a relief it is knowing he can’t wander anymore. That he can’t fall in the night while the rest of the house sleeps. That someone is watching over him, 24 hours a day.

And now, he may never wander again – lonely as a cloud.