That's right, "Yikes!" It's what the "Host" in the Caregivers segment of HBOs The Alzheimer's Project said when Chuck, a care recipient with Early Onset Alzheimer's, reported that 12 out of 14 of his maternal grandparents' children died of Alzheimer's, including his mother. This word is uttered once more by the "Host", later in the film, when Daphne's partner and caregiver, Jude, is explaining to him an incident of crossed medical signals that she will have to sort out. After watching the film, I had to echo it. Yikes! What were the producers of The Alzheimer's Project thinking when they put together this episode?!?
Despite my immediate reaction, this episode is the hardest of the segments for me to review. I was impressed with the first episode, The Memory Loss Tapes. I liked the next two, and the last. I was really looking forward to this one because I figured, considering what they did with the first two, the one on Caregivers couldn't miss and, anyway, that's the one I was excitedly anticipating, seeing as how I was a companion and caregiver to my mom for a decade and a half. I can't quite put my finger on what bothers me about it...so, if you don't mind, I'm going to ramble in a combination of stream-of-consciousness and seat-of-the-pants writing.
Maybe I was disappointed because of my expectations. Like when I saw Mary Poppins in grade school. My expectations had been built up so out of proportion to the movie, I practically expected Mary Poppins to walk off the screen and into the movie theater. I was disappointed that she didn't. Still, "they" say, you get what you expect; and, certainly, one of the caregivers in the video, Mike Sanchez, got exactly what he expected in regard to taking care of his dad. He'd been told taking his father into his home would disrupt his personal and family relationships. It did. People told him he couldn't do "this" forever. He couldn't. They told him he'll know, he'll just know, when he can no longer do it. He did. He was told it takes six months for someone who's been placed in a nursing home to "adjust". It looks like that will be true for his father. At four months, his father is still having adjustment problems.
"It's hard to explain to someone with words until they've been through the experience. But now that I've been through the experience, I know exactly what they mean." And yet, almost everything he says, almost everything he tells us he's experiencing as a caregiver, sounds like something someone told him. I know this because I heard, and read, everything he's saying, often in exactly the same sequence of words. Almost all of it was wrong for me, and I knew it immediately as I was hearing it. Almost all of it was right for him...or, at least, turned out to be right for him. I can't guess whether he thought, as he heard other people tell him everything he said in the film, that they were right. Maybe he didn't know. But, somehow, he proved everything right.
I know there are many caregivers to the demented elderly who operate this way. I've met them. I've talked to them. Sometimes I've even advised them, when they've asked. I've found them frustrated. I've considered their caregiving instincts blocked, but I've known there was little I could say to them to address a blockage they didn't think they had. The times I've tried I've been called "a saint". That's when I know they don't want anyone breaking through their block.
"I don't think I'm a saint," Marianne, Chuck's partner and caregiver, says early in the film, after the interviewer tells her that Chuck has said she is. "And I'm not sure Chuck really thinks I'm a saint. Maybe in that instance, but..." Knowing that Chuck was a caregiver for his mother, I'm sure she's right. Seeing his character in the film, I suspect he said this with a touch of irony that he knew he and Marianne share about their situation. She chuckles. She stares pointedly into the camera and grins. The interview ends. I suspect it ends there because the "host" is dislodged and doesn't know how to recapture his bearings.
We're not saints, people. When someone called me a "saint" while I was caregiving I knew that either they were related to a caregiver and were feeling guilty about the help they weren't offering, they were a caregiver who hadn't accepted the role and probably never would, or they were one of my close friends or sisters and were acknowledging a shrewd shared understanding.
Despite this, the editing, the lighting and the dirge music surrounding all the caregivers in this film, whether or not they were handling the role well, regardless of what they were saying, cast an aura of sainthood around each one. For me, a caregiver who's been accused of being a saint, it was annoying. I'll bet it was annoying for the caregivers in this film, too, when they viewed the film created from their interviews.
At the beginning of the film the producers have captioned across the screen: "Alzheimer's Disease progresses differently in every person." The producers, however, forgot to mention that caregiving progresses differently in every person who takes on the responsibility of giving care to an Ancient and/or Demented One. There's a reason for this. The older we become, the more we differentiate from others. It's the most important aspect of aging. That's a medical and psychological observation; it's even the answer to a CME question on Medscape. Thus, caregivers to the elderly, by definition, are likely to be, within their group, extremely differentiated from caregiver to caregiver, no matter what their age, because each is taking care of someone not just slightly but solidly different. And yet, producers behind shows like this, even as they present differences, they have to, the differences are inescapable, because they are not focused on these differences and the multiplicity of meanings they confer upon elder caregiving and elder caregivers, somehow gloss over the differences to the point where it's easy for a viewer to miss them. I think they inadvertently train their cameras and their editing to ignore the differences. I'm not sure why this happens in most specials of this type. Most caregivers and people around them know better.
There were portions of the film that could have spoken volumes of accurate information but didn't. Daphne's and Jude's relationship, for instance, should have sparkled. All the elements were there...but the editing took the sheen away. The segment during the support group session that Jude attended, where Jude endured it with grace, even though, with a practiced eye, one could see that she was actually politely tolerating it because that's what you're supposed to do in a support group, especially if the support you're being offered is doing nothing to support you, could have been edited into a strong statement on the ambivalent support that such groups offer and the subtle tyranny under which such groups often operate. But, the editing made it seem like this group offered the best of tea and the height of sympathy, even though it didn't.
Mike says, of caring for his father, Nacho, after he's moved him into a nursing home: "We know that you just don't drop them off somewhere and everything's fine." And, later, "When you don't see 'em every day I think, you know, some of the changes affect you a little bit more."
Jackie says of caring for her husband, Marvine, after he's moved into a nursing home: "Marvine and I talked about things, when we were younger, that I would never put him in a nursing home and he would never put me in a nursing home. And it was like a vow that we made. [Her voice increasingly halts from here on.] But...some vows...you have to break them. My...health...was...at stake...so...I really didn't have a choice. It was a very hard decision to make."
Pat says, of caring for his wife, Terry, after she's moved into a nursing home: "When I put her in that home, I used to do the private duty all day Saturday and all day Sunday, because I didn't think the home was qualified enough to take care of my wife."
The scenes in nursing homes could have segued into the discussion of a real and growing problem for caregivers; the inadequacy of the professional care industry to meet the needs of their clients and caregivers; the exorbitant cost of inadequate professional care. It could have developed into information about efforts to change this situation, like Dr. Bill Thomas' resolve to see every nursing facility in the country closed and his initiation and development of the Eden Alternative.
A good friend said to me a month ago, while spending long and meticulous hours tending to her husband who was enduring live-in rehab for a week in the same facility that handled my mother's live-in rehab for a month, "Every evening before I drive out of the parking lot I sit in my car and weep. I couldn't help it. The atmosphere..."
"I know," I said. "I did the same thing."
Later, after her husband was home and doing fine, she told me, "He and I have made a pact. If we are ever in danger [Are you getting that? "In danger"] of going into a nursing home, we're going to close the garage, get into the car, start it up..."
I know these people well. Both have positive outlooks. Both bounce back like the innards of golf balls made in the 1960s. Neither is depression or suicide prone.
But, in the Caregivers segment of this series, the moving of care recipients to a nursing home, when a caregiver's family and community was incapable of providing top-notch support, was delivered with a shrug and the camera moved on, the dirge continued.
Despite the obvious acts of courage, love, tenderness and compassion that were demonstrated in this film, the words that resounded were, "demeaning", "frustration", "upset", "stress", "sucks", "hard", "difficult", "exhausting", "scared".
Anyone who's ever been an intense needs caregiver to someone with dementia knows it's hard. It sometimes takes a superhuman effort to negotiate the challenges involved in giving this kind of care which is why, when I was caring for my mother and had negotiated a particularly difficult patch, I would refer to myself as SuperCaregiver and journal about looking forward to receiving my cape and my SuperTasking paraphernalia. It can, at times, be frustrating, confining, stressful, frightening; it can provoke anger, depression, tears, anxiety, insomnia, a variety of stress related physical ailments. It's important to give overt expression to these so the feelings don't subvert you. This film gives them plenty of expression.
It can also be transcendent, illuminating.
It can delight you by revealing to you the surprisingly resilient and creative stuff of which you are made.
It can, over and over, evoke moments of astonishing acceptance and peace.
It can teach you what compassion really is and make you glad you learned this.
It can teach you what surrender really means and make you glad you learned this.
It can teach you how to acutely tune into a person when everyone else is willing to consider that person "lost" or "already dead" and it can make you glad you learned this.
It can change the way you feel about life, release your capacity for the mysterious.
It can usher you into moments of intimacy you never dreamed were possible with another person.
It can turn you into the person you always admired but thought you'd never become.
It can turn your life in a direction that you realize is so right for you you're surprised you didn't discover that direction before.
I've heard plenty of caregivers talk about these. But, nobody talks about these in the film.
Toward the end of the episode the producers have captioned across the screen: "Families coping with Alzheimer's often face enormous stigma." As I read this I thought: "And HBO has just institutionalized that stigma with this program."
You want to watch a good film about caregivers to the demented elderly? A caregiver film that doesn't flinch from the depths or the heights?
Watch Marvin's Room.
Watch Savages: Even though it's not what I'd consider a classic caregiver film, it covers a lot of gritty caregiver territory.
Don't watch Driving Miss Daisy: It's too full of clichés.
And don't watch the Caregivers segment of HBO's The Alzheimer's Project.