This Is What 70 Looks Like: “Why Hollywood Can’t Get It Right”

Still Alice is movieland’s hottest foray into the world of Alzheimer’s.

Given that all of us will come face-to-face with dementia in some form in the next decades, it’s little wonder Hollywood is piling on with films about “lost” loved ones.

Especially women. Statistics point tellingly to a 70 per cent preponderance of Alzheimer’s in women. They also make up more than 70 per cent of caregivers. My only surprise is that those numbers aren’t higher.

Losing your mind while keeping your body will always be an uncomfortable topic.

Indeed, for youth-obsessed cultures like Hollywood, the long, slow decline of your mind is not exactly catnip to audiences looking for a quick dramatic hit.

But when you’re just 50, which Alice was, when she was struck with early onset Alzheimer’s, and when you’re an esteemed university professor, wife and mother who loses her memory, status and connections, it’s especially tragic.

Oddly, the profile of Alice in this movie fits the earliest description of the disease by Dr. Alois Alzheimer in the early 1900s. His documentation of the cognitive decline of a 50-year-old woman signalled that this was a disease process rather than the attrition of her faculties brought on by aging. A post-mortem of her brain revealed the plaque and tangles that became the cornerstone of research for years.

Alice was young for anyone with Alzheimer’s, and her particular manifestation is very rare even today.

So what about us?

My view is that all the memory games, antioxidant diets, exercising and meditation classes will only marginally slow the much longer decline that Alzheimer’s and its fellow dementias have in store for too many of us.

We have every right to be frightened, especially if we’ve already had a personal experience with Alzheimer’s in our family or circle of friends.

So Hollywood’s rendition of what this looks like can only soften a dire reality with adages of meaningful aging and demise, complete with shining paths and sunsets.

Don’t get me wrong. I love Julianne Moore, particularly her teeth, which I watched a lot in this movie. There was almost too much close-up face time with Julianne, but representing her shuddering memory blanks with an opaque, hazy screen and a puzzled look fails us as viewers. Addressing a precipitous fall-off in the capacity to maintain personal care with plaid shirts and sweats and less neatly combed hair … well, that’s Hollywood.

I’m not saying it hasn’t been done well before.

In 2001, Dame Judith Dench did it in Iris, a movie about the decline and fall of British novelist Iris Murdoch. It was so disturbing that I walked out of the theatre and went 20 blocks before I could stop and collect my thoughts.

And it has been done well in Amour, a 2012 film about two retired music teachers that garnered the Palm D’Or for its two octogenarian actors, Jean-Louis Trintignant and Emmanuelle Riva.

Both those movies hit deeply at the personal issues of what it’s like to care for a partner who is losing their memory as they live and breathe. Iris Murdoch’s story so upset the movie critic Roger Ebert that he was on record as hating it because by focusing on her end it wiped out the great achievements in her life.

Both movies tell it from the perspective of the caregiver – both men.

Sadness permeates each frame of these two films, in spite of tender care and the tug to memories past. There is a ceaseless undulating fear and anxiety that hangs over each day. Ultimately, these are portrayals of the brooding and numbing acceptance of fate.

Neither film spends much time in close-ups though both actors are compelling and in some ways it is just as horrifying to watch their struggle from mid-view.

My husband’s comment, not having read Still Alice after seeing the movie, was, “I’m going to have two bottles of pills, for good measure.”

Because what the movie does detail is that Alice, while still aware in her precipitous decline, carefully plans for her own exit. Moreover, she reminds herself not to tell anyone that she is stockpiling sedatives for the day when she fails her own memory test. It is, for at least another year, unless you live in Quebec, a criminal act to help someone end it. Even then, according to the careful wording of the Supreme Court of Canada’s ruling, you will need to be competent to request help in ending your own life.

What my husband was expressing of course, are sentiments we all share: not to be “not there” and in control of how not to be “not there.”

So the recent New York Times article about one prominent lawyer announcing his advanced care directives struck a huge chord. When he doesn’t recognize any of his family members or doesn’t know who he is after a number of weeks, he is not to be fed or offered water. In this way, he can foresee and ensure his own death within a finite number of days. So can his family.

He says “If I am not me, I don’t want to be.”

In Canada, this issue is already being tested in the courts.

British Columbia’s Supreme Court has ruled against a similar directive made by an 82-year-old nurse. For years she’s worked in the field of caring for the aging.

So she was clear about her end-of-life wishes if she become mentally incompetent. Her family was aware and agreed with her. But they found themselves unable to persuade the nursing home staff to carry out their mother’s wishes, which was to stop giving her food and water.

The B.C. Court ruled that offering someone food and drink was not in the realm of medical care or a medical directive but, rather, basic humanity. The fact that this woman opened her mouth to take in food even if it was a reflex act, constituted from the court’s perspective her willingness, even her determination, to continue living.

The issues surrounding assisted suicide let alone advanced care directives are now front and centre in Canada and a matter of hot debate.

It shouldn’t be any less. The justice system is conservative by nature; its roots ground our values and protect us as citizens. End-of-life care is something we all need to concern ourselves with because we are going to live into old and older age.

Unlike Alice, our decline will likely be a creep rather than her crash: diagnosis to total dementia in just three years.

And in the same vein, our decline will not likely be a ravaging cancer with agonizing pain.

That is easy or, at least if you have cancer, we can ease the pain – the track is set. If you’re demented, it is a very murky way.

More and more likely, our death will be a shadowy withering and a husking-out. Even then, my experience is that the end game is a staggered one; good moments intrude and sparkling episodic shards of memory bubble up, astonishing the family and resetting the bar.

In her 90s, my patient had a story from her girlhood she’d never shared before with her daughter. These are the moments that offer faint hope and meaning, however slight, for the family. It reaffirms staying the course.

It shoves aside the unspoken conversation about quality of life and the question: why persist? So the family and the parent continue their endurance game.

I’ve learned that we may not predict how our end will come. But most of us do want control of the process, if we’re able. The stage is now set for these conversations to begin in earnest around the kitchen tables of Canadian homes. Advanced Care Directives can be the tool that helps families state the plan for our end of life as much as our reflections on how it’s going now and can we do any better.

What we need now is a very public discussion of something most of us can barely have a private discussion about.

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Dr. Jean Marmoreo, 71, is a Toronto physician, writer, adventurer and athlete.  Her blog “This is What 70 Looks Like” took silver at the 37th annual National Magazine Awards gala in Toronto.