This article was originally posted as one of our Carer Tips newsletters.
When I got home, Lena was nowhere to be found. I was terrified. She’d gone out, that was clear, and she’d never find her way back. She had no sense of direction. She didn’t know our address. In fact she couldn’t even tell people her own name ever since Alzheimers really kicked in. Where should I start looking? In the square mile surrounding our house, there’s a tangle of around 200 streets. She could have gone in any one of about eight directions.
This was just the first time Lena went missing. Since then, around 18 months ago, it’s happened on four or five other occasions – twice it was even when I was in the house. I’ve developed coping strategies, but let’s talk today about some of the serious legal and ethical issues. When does keeping people safe become imprisonment?
A Good Samaritan
I’d been out on a training run, just like I had so many times before. With a marathon approaching the runs had been getting longer, and this time I’d been away for around 90 minutes.
Generally I scheduled my long runs for the weekend, when one of the kids would be able to drop by to keep an eye on Lena, just in case, but this time it was an afternoon run in midweek. She always looked a bit crestfallen when she saw me changing into my running gear. I don’t think she really understood where I was going or why it was important to me, but the sight of me in shorts, T-shirt and trainers was a sign that I was going to be away for a while. But I knew she’d stay safe in the house. For the last three years, ever since she started getting lost when she went to the corner shop, she’d never ventured outside by herself.
But today she had. She was gone. And she could have been away for an hour or more already, walking our busy city streets. Heart thumping, but from fear now, not exhaustion, I kept running. Instinct told me she’d probably have taken the route she knew best – the road we took to the shops both day. And instinct, thank goodness, was right. I spotted her within five minutes, talking to a woman, surrounded by four small kids.
As I approached, the woman was on her mobile. Lena spotted me, broke into a big grin and started moving to meet me. But the woman tugged her back, and looked me up and down sceptically. I was a bit of a sight, mud-splattered, perspiring, out of breath.
– Do you know her?
– Yes. I’m her husband. Where have you been, älskling?
– What’s her name then?
– Lena. It’s Lena, isn’t it?
– OK. Well I’m just on the line to the police.
– Oh. Shall I speak to them?
– Yes, you’d better.
Goodness knows how they’d started talking, Lena and this woman collecting her kids from school – but Lena’s never been shy about meeting people, and these days she doesn’t distinguish between people she knows and people she doesn’t … probably because she’s not quite sure which is which.
And the woman had handled the situation perfectly. She could have just walked on, shepherding her children home, ignoring this crazy woman who was pestering her. But no, she’d taken the time to listen, weighed up the situation and decided there was a problem, made the correct decision to call the police. And she was right to question my credentials – for all she knew, I could have been a white slave trafficker looking for easy prey.
I was grateful, not just to her but also to all those Dementia Friends and Dementia Champions who have worked tirelessly to make the invisible visible, and to help people recognise, understand and respond to the problems better.
Lena in chains
When people with dementia leave the house and get lost, they call it ‘wandering’. Wandering’s seen as a bad thing, something to be prevented, almost a perversion. But in fact, as I explained in my recent newsletter on walking, it’s no different from the desire that all of us have just to get out of the house and take a walk. It’s an affirmation of our independence. Lose it and we’re no longer free-range humans, but cooped and caged.
Yet there’s no denying it, going out alone is dangerous for people with dementia when they reach the stage where they can’t find their way home, and when they can’t explain who they are and where they come from. What will happen when they try to cross a busy road? Who might they meet? Where will they end up?
I’ve just checked my feed for news stories about dementia in the past 24 hours. There are ten stories of people going missing. Two of them were found dead.
After Lena’s first brush with real danger it was time to take action. If she hadn’t met her Samaritan, it might already have been too late. But what could I do?
A couple of years earlier, I might have depended on a mobile phone to stay in contact or to track her. But those times were way behind us. By now Lena couldn’t use a phone, and even if I’d just wanted to use it as a tracking device, there was no guarantee she’d have it with her if she left the house. Other GPS tracking devices are available – the ones some pet-owners use, for example. But nothing really seemed to fit the bill, for one or more of these three reasons:
- They can be removed – and if Lena can remove a tracker, I can guarantee that she will.
- GPS only really works well with direct line of sight to a satellite. Indoors, it’s hopeless.
- Most of the devices on the market have expensive monthly network contracts. Because I’m a full-time carer, I can’t work – so money is tight.
So what could I do? One of my daughters came up with one solution: a pretty little gold bracelet. On a plaque, a heart was engraved on the back, and Lena’s name and address on the back. The chain was the perfect circumference for her wrist, with no slack allowing it to be yanked off. Lena’s worn it, day and night, ever since.
But that didn’t solve another problem. Lena wasn’t deterred by her experience. In fact now she’d tasted her freedom again, she wanted more of it, and she kept making moves to go out again, even when I was somewhere in the house. It’s something I’ve noticed about dementia. As old habits die, new ones replace them. Going out for a walk was becoming a new habit.
So I took to keeping the outside doors locked at all times. Not just locked with the key inside. Lena could still unlock it. But in security-conscious Salford, we have a door-chain at front and back, and I knew Lena couldn’t figure that out.
Did my new strategies work? Not entirely.
There was one time when my daughter Josie dropped by for a chat after work. I made her a coffee, and we spent 20 minutes deep in conversation in the kitchen before I suddenly realised we hadn’t seen Lena for a while. We’d forgotten to lock the front door when Josie came in, and my adventurer-wife was gone.
We set out in different directions, me going one way on my bike, Josie the other on foot. Every five minutes we called each other.
– Seen her yet?
– No. No sign of her.
30 minutes had passed, and I was about to call the police, when suddenly, taking one last pass on the road from the shops back to home, I glanced into one of the connecting streets, and there, a hundred yards away, I could see a little cluster of people – that was Lena’s hair glinting unmistakably in the sunlight. As I rolled up, there she was with a glass of water in her hand, chatting away to three women standing on the front patio of their house.
– There you are!
– Ah. Do you know her? We couldn’t make her out or what she was saying.
– She’s been speaking Swedish to you, I expect. This is Lena. She has a little problem with her languages … Alzheimers.
– That’s what it is. Told you, didn’t I?
– Yes, she’s got a little bracelet on, with her name and address on it. Look.
– So she does. We didn’t think to look there. Anyway, we saw her walking down the street, looking a bit lost like, and we asked her if she wanted a glass of water …
These Salford people! Salt of the earth!
Dementia safety vs ethics
I got better at remembering to lock the door, and my kids all knew the protocol when they come by to visit. But did keeping Lena locked in the house make her safe? Not necessarily. Not when I went running.
It’s one thing to keep the door locked when you’re in the house together, quite another when you lock someone in because you’re going out.
After that first incident, I stopped doing long runs unless there was someone to take care of Lena. But I was serious about my training – I’d just been selected to run for my country in an age-group marathon, and I didn’t want to let the opportunity pass. The kids weren’t around every day – so perhaps it would be OK if I took just a short fast 20-minute run leaving Lena locked in. After all, what harm could she come to? There were no risks in the house that I could see.
I had terrible qualms about it when I took that first run though. I was imprisoning my own wife. I felt even worse when she came to the door behind me, eager to come out with me.
– You can’t, Lena. This is my training. I’m going to run. You hate running.
As I turned the key in the lock, I could see her still standing there, behind the frosted glass.
It was the same every time, but I learned to live with my guilt. 20 minutes became 30, then 40, then an hour. And I consoled myself with the thought that Lena was safer inside than outside … until one day, when I was in the house, she managed to blow up the oven!
No matter how safe you think your home is, you can never entirely rule out freak accidents. And if something awful happened in the house while you were away, how would your loved one escape? That’s one of the reasons why it’s actually against the law in the UK to lock people with dementia in the house when you go away. The Deprivation of Liberty Safeguards legislation (DoLS) states that in cases where it is necessary to deprive the liberty of a person who lacks the capacity to consent to care and treatment, in order to keep them safe from harm, then the local authority must present a case to the Court of Protection which may then grant authority. Not the carer. The local Council!
I confess. When I locked in Lena, I was breaking the law. I suspect I’m not the only carer to offend.
The other reason for the law, as its title suggests, is that locking people in, whether or not they have dementia, is an infringement of their basic human rights. Article 3 of the Universal Declaration of Human Rights states that “Everyone has the right to life, liberty and security of person.” There’s no clause adding “… unless you have a mental disability”. Dementia doesn’t change the fact that we’re human beings: we still deserve the same respect and right to dignity.
My conscience was right in the first place. It was unethical to lock Lena in, as well as potentially dangerous.
To find out more about this important campaign start with Rethinking Dementia Care by Banning BPSD from Kate Swaffer's blog and then search her site for "BanBPSD". Howard Gordon also has an excellent primer / reference point on dementia and human rights in his article The United Nations Convention on the Rights of Persons with Disabilities (CRPD).
The carer and liberty
What about the carer’s human rights?
By the time of Lena’s explosion, I hadn’t been running for several months, so I wasn’t leaving her locked in any more. A long-term injury put me out of action a year ago, and it’s only now that I’m feeling almost ready to get out on the road again.
I can’t wait to get started. Running got me through those first four years after Lena’s diagnosis. It gave me a precious time every day when I could forget all about dementia, all about responsibility. It gave me personal goals to aim for, targets that meant nothing to the world but a lot to me. It gave me companionship. It got me into good physical shape – the best I’d felt for 40 years. And all of this made me a stronger, more resilient carer when I got back to Lena.
After a year away, I feel all those benefits rapidly slipping away. Sure, with The Care Combine I have a stronger sense of purpose than ever. But now I’m back all day long on the dementia wheel again. I’m tired – my brain needs a break from it. And I can feel my body filling out and slowing down again. Hell, none of my clothes fit any more – there goes the feel-good factor! The one saving grace is that I got myself into shape before, so I know I can do it again.
Or can I?
The difference is that now I know I can’t get out and leave Lena alone like I used to. I’m just as much dementia’s prisoner as she is. In very different ways, we’ve both lost our liberty.
That’s why we need The Bine.
Next time, I’ll go on to explain exactly how The Bine will restore freedom – to those with dementia and their carers – giving examples from a pilot project we’re planning now.
Care to share?
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