National Post (National Edition)
A white lie may be a comfort to Alzheimer’s patients.
It takes a village. My colleague Doug Quan wrote a fantastic piece for the Post recently. He reported on a so-called “Alzheimer’s Village” — a Canadian first, though there are some operating in the United States and Europe — that is soon to open near Langley, B.C. The village will be a privately funded facility; the cost will run around $8,000 a month. Patients there will be allowed to move about the village with freedom, or at least enough freedom that their fading brains may not realize their pleasant little community is, in effect, a gussied up long-term care home.
That may sound dismissive; it’s anything but. I’ve been fascinated by the concept of a village-style dementia ward since I first read about it. The concept first originated in the Netherlands; I would have read about it soon after the Dutch village opened, in 2010. I was reading a lot about Alzheimer’s in 2010. That’s the year my grandfather died of it.
What a blessing a village would have been. But there were none available, so he died in a sterile long-term care facility, where he’d lived his final eight months, after his violent outbursts — a product of the disease, he had been a very gentle man before Alzheimer’s — became too much for my grandmother to cope with at home. As unpleasant as the long-term care facility was, we were lucky to have it. It was a relatively good one, and close to home. Not every family with a loved one suffering from Alzheimer’s is as lucky, and we knew it.
The village near Langley is a five-acre property, designed to be
simple and safe to navigate (no stairs, for instance). Other similar villages around the world have gone further, seeking to recreate a retro-themed environment that is comforting to those whose minds have retreated to an earlier part of their life. Others aim to replicate, in a controlled environment, some of the little touchstones of life that can mean a lot to people — a grocery store, or a pub (serving non-alcoholic beer).
Little touches of a normal routine can make a big difference for someone lost in their own sick mind. Even in his final days, for instance, by the time my grandfather had begun to lose all connection with the outside world, he still kept a comb in his pocket and would routinely comb his hair — a lifetime of fastidiousness had somehow created a habit that even Alzheimer’s couldn’t touch. Ditto his love of butterscotch candies. Some communities seek to recreate those comforting, familiar little habits on a larger scale, and place dementia sufferers in an environment that corresponds more closely with how they remember the world.
Quan’s piece does raise a fascinating ethical issue. He cites a 2016 report by the United Kingdom’s Mental Health Foundation. It’s a fascinating report, which notes that a whopping 98 per cent of caregivers reported resorting to untruths when dealing with dementia patients. The report concedes this is sometimes necessary, but still acknowledges the ethical concerns over such false environments, asking if they’re akin to lying to the mentally ill. It’s an interesting question, but for anyone who’s dealt with a loved one lost to Alzheimer’s, you come to accept the lies. It’s a harsh truth, but a truth even so — 98 per cent of caregivers resort to it for a reason.
A small example: my grandfather had worked hard most of his life, and once fully consumed by dementia, he woke up most days thinking he had to get to work. He could get violent if you tried to stop him. He didn’t recognize any of us anymore, and I always ruefully understood why he’d get so angry. Imagine if you were leaving your house in the morning and a bunch of people you didn’t know tried to stop you. You’d get upset, too. So eventually, rather than try to explain that he was an 82-year-old man 27 years into his retirement, we’d just tell him that it was his day off and he could relax. For some reason, that usually worked.
Another example: a friend of mine watched his grandmother slide into Alzheimer’s, just a few years before my grandfather did. She was always looking for her sister, who’d passed away — she’d call her son’s house, trying to find her, sometimes many times a day. Eventually, it became easier to just talk around the questions or avoid them, rather than having to tell her over and over that her sister had died.
Lying becomes a necessity, if not a kindness
No one likes the idea of lying to their loved ones, and it seems cruel to lie to them when they are so helpless and confused. But you don’t have to live with it long before you come to realize that the greater cruelty is expecting them to understand that their brain is being ravaged by a condition we barely comprehend, and to accept that while they think they need to get to work or pick up their (longsince grown) children from school, they really just need to stay put.
There is a time during the progression of Alzheimer’s when you can have fairly coherent conversations with someone about their condition. They sometimes have insight into their own failing minds that can break your heart. But that window closes. When it does, the primary goal becomes keeping the patients calm and happy. Repeatedly breaking bad news to them, in the end, stops serving any purpose. A comforting lie becomes a kindness.
Again, no one feels good about this. But Alzheimer’s is a disease that strips people of their memory and autonomy layer by layer. It is relentless, and forces caregivers into the horrible position of having to be the bearers of the same bad news over and over again. Anything, anything, that makes it a bit easier to get through a day with your fading loved one has to be considered.
Until we have a cure, all we’re left with to offer is comfort. If a white lie or a faux pub makes the daily life a little bit easier for everyone involved, those blessings should be embraced.
National Post magurney@postmedia.com
Twitter: MattGurney