My mom, Linda, has lived primarily in a wheelchair since the spring of 2014; she suffers from an illness called Normal Pressure Hydrocephalus. Before her diagnosis, the disease caused her already-developing dementia to become rapidly worse; on one horribly memorable night in February 2014, while I was over from England visiting my parents, she literally forgot how to walk. (NPH causes both dementia and mobility problems.) It was nightmarish to watch.
That visit was the last time I would see her not living in a wheelchair.
Since then, mom has been through the health-care wringer: she has a neurologist, a neurosurgeon (who performed the life-changing surgery that allowed her to learn to walk again – he never doubted her), a community care access coordinator, an occupational therapist, a regular caregiver paid for by the Ontario government… the list goes on. We live in a small university town in a wealthy province, and we benefit from three major teaching hospitals and a dedicated geriatric facility all within a few minutes’ drive. So mom was set up to bounce back from the worst NPH could throw at her, and she did.
Still, she spends most of her days in her wheelchair, even now. The time it took to reach the NPH diagnosis, meet the neurosurgeon, decide on a care approach, have the surgery, and then go through rehabilitation was long, and in that time she lost a large amount of muscle strength in her legs and hips. Her long-term back condition also got much worse. These days, she walks regularly with her walker in the house as a rehab exercise, but she isn’t comfortable using the walker too frequently. She fears falling – very understandably. And she won’t walk with it outside (not yet).
This poses a challenge for her, and for my dad (her primarily caregiver), from a wellness point of view. Not walking = not walking! Not moving from the waist down, not observing the wide world around, missing out on stimulation both physical and mental. This is the primary health issue we deal with these days: how to help mom exercise, within her comfort zone, both her body and her brain.
Needless to say, we’re working on a variety of approaches. One of her favourite, though, is going shopping.
Back in the day, my mom was a massively active woman. When I was too lazy to get out of bed at 6am (hey! I was, like, thirteen!), she took over my paper route. She walked the dog three times a day, every day, around our neighbourhood in North Edmonton. She walked long distances without the dog, just for fun. She gardened constantly, skipping and hopping and singing her way through her chores. She was not just active, but lively.
She also liked to shop. Like, a lot. Out at the mall or the big-box grocery stores, she’d walk miles while browsing the aisles. I hope that doesn’t sound condescending, because it shouldn’t – it’s not. Shopping includes walking, bending, lifting, the bodily contortions required to change in and out of potential outfits in badly designed, teeny-tiny change rooms, and so on. There is actually a huge amount of physical labour involved in “going shopping” – among other forms of labour, too.
The women in the image above have tongues in cheeks, but make no mistake: our culture mocks the idea of shopping as anything more than frivolity in part in order to mock the women whose primary job it is, and has always been, to shop for their families (or for the families of those for whom they work). Our culture trivialises those women’s labour and pretends that labour isn’t integral to the workings of free-market capitalism. In fact, women as consumers have always formed the backbone of Western capitalism. And shopping has always been great physical and mental exertion. In the early days of the department store and what we might now call shopping-as-usual, the freedom to browse and buy gave women the attendant freedom to be out alone, or in small groups, on city streets without being accused of being sex workers. Really. In other words, shopping, at the beginning of the modern period (roughly circa 1900), literally gave women the freedom to walk, unmolested, in public near their homes.
(Curious to learn more? My friend Marlis Schweitzer has written a terrific book that takes up this issue, and more. Check it out here.)
All this to say: shopping is now a regular workout for mom, with me as personal trainer, and I’m thrilled about it. She gets a challenge when we get into and out of the car: this is a transfer she completes herself with the help of a portable handle that can be inserted into the side of any car door frame. She gets another challenge anytime we try on clothes, which I insist we do (even if she claims to know her size in every single outfit we pick! Every personal trainer knows that trick…). Last week, she stood up, sat down, and otherwise shimmied and manoeuvred into three different pairs of trousers while we shopped for the right fit – after climbing out of her chair and into the totally wheelchair-inaccessible change room. (Thanks, Hudson’s Bay Company. Sort of.) That was quite a bit of ab and leg work for someone who largely sits all day.
Sometimes, too, we bring her walker with us, park ourselves in a small shop or section of a department store, and she lifts herself out of her chair and browses a bit using the walker as her aid. If she becomes exhausted and cannot continue, she either sits on her walker’s built-in seat for a moment, or I simply bring the chair to where she is and she takes a break.
As important as this physical work is for mom, the mental stimulation of shopping is even more valuable. Her memory’s decline was slowed by her surgery, but it continues; she is living with dementia, which means she needs to find basic ways to be challenged, mentally, every single day. At the shops all the neat stuff for sale offers plenty of useful stimulation, as does thinking about prices and whether or not something is worth the splurge. (She’s an elderly woman in a wheelchair who worked hard all her life! I always say the splurge is worth it. Sometimes she agrees with me.) Last week we encountered a really helpful sales assistant at the perfume counter, and she gave mom a host of samples to investigate. That olfactory stimulation, too, was mental exercise.
In my first regular post on FFI a month ago I wrote about the “We’re the Superhumans” campaign for Team GB’s paralympians. Mom isn’t about to pole vault, swim, or cycle her way into any record books, but who cares? Like many of the ordinary people in that campaign’s trailer, she is carrying on with her life as she lives it now, seeking gymnastics where she can find them and hoping to enjoy herself along the way. For her, exercise has become about living as well as she can, in her body as she finds it each day, making opportunities happen when she can, and taking pleasure in the ride as much as possible (especially when I’m driving).
In fact, that’s probably what exercise should be about for all of us.
Until next month!