[Editor’s note: This comment was originally posted by Al Power in response to some fantastic comments on his post about the film “Away From Her.” Since it’s longer than the original post (and hard to read in the comments section as Naomi pointed out :), I thought it’s worth putting up by itself.]
Well, now we’re getting somewhere!!
Let me try to explain where I’m coming from in a somewhat coherent way:
First, regarding plot believability (in “Away From Her”), I tried to steer away from those concerns – I could also nitpick some of the details, but I was looking at this movie from a whole different place. I don’t see it as overly pretty or rose-colored at all. In fact I think it asks harder questions than “The Savages” did. The latter movie hits the more obvious problems with nursing home care, (all very legitimate), and the family issues rang extremely true to me in that movie, as I have said previously.
“Away From Her”, however, touched on areas that I have been wrestling with in my current writings. A major difficulty most people have with my ideas stems from the nature of this disease. It’s far easier to make a film that finds hope in coping with, say, cancer or paraplegia without being accused of being Polyanna-ish. But there’s something inherently difficult in the concept of losing one’s cognitive abilities – people find it much harder to see this as anything but the worst of tragedies. I think we’d all rather lose just about anything than our mental faculties, and many would choose death first.
What I’m trying to say is that it is this very tragic view of Alzheimer’s disease that has caused our whole medical and elder care system to treat it purely as tragedy, and to view the person with dementia as fundamentally and irretrievably broken beyond repair.
This has played out in the ways we resort to institutionalized, segregated and programmatic approaches, and resort to medications that we would never rush to use on people in any other state. There is no more disempowered, “abandoned” person in our medical care system than the one with dementia.
As a result, most caregivers don’t even bother to, as Fiona said, “try to find a little grace” in a bad situation. And that is what to me is much deeper than The Savages.
It’s easy to show a crowded, dingy nursing home with crass lighting, but to show a country club atmosphere with people that say all the right things and still make such incredibly poor choices for those who live there is, to me, a far deeper indictment of how our elder care system needs fixing.
It is this same attitude toward dementia that leads many loved ones to take on the person’s disease more as their own personal tragedy, which is what Fiona’s husband did. It certainly was a tragedy for him as well, but he kept trying to shake her back to a place her mind could no longer occupy, because he could not find that grace and acceptance of her illness that she had somehow come to terms with in her own way. That is something I see quite often. And his attempts to shake her back to “normalcy” mirror our usual medical approach to people with dementia – it’s like pushing a paraplegic out of their chair to try and force them to walk.
And when people fail to respond to our efforts, we medicate them for failing. I liked it that Fiona said that she preferred to sit with Aubrey because “He doesn’t confuse me”. What I also liked was that Grant finally discovered that the best way to connect to his wife was to go to her place, even if it wasn’t his own reality.
This is the core of my work with viewing dementia from an experiential, rather than a neurochemical standpoint, and conforming the environment to the person’s needs, rather than trying to force them back into “normal” patterns that no longer exist.
While it certainly doesn’t cure the disease, some amazing “blossomings” have resulted – and people often do things that many doctors said were beyond their capability. (There are a few people with dementia who have traveled the world as spokespeople for those with the disease. In her book Dancing With Dementia, patient/author Christine Bryden writes that she has been called a “liar” by neurologists, because she shows a picture of her MRI scan at her talks and they refuse to believe that a woman with such a “swiss cheese” brain appearance can stand up and lecture!)
So ultimately, as crazy as it may sound, I choose to see each person with dementia as a person capable of continued growth, development and engagement with life, in spite of the fact that they have a disease that will, as Grant said, “progress”.
And that view informs my out-of-the-box notions of how to care for people with the disease. This is the only movie I’ve ever seen about dementia that has dared to challenge our conventional view that there is little more than tragedy and loss, and to show the complex capacities that many people maintain well into their disease, (that our usual approach to care unfortunately stifles and suppresses).
What I’m saying may sound hopelessly naive in theory, but when 40% of people with dementia in nursing homes in the US and other developed countries are on antipsychotic drugs and only 7% of mine are, I think there is reason for hope.
Thanks for the responses!