Previously I have posted a few excerpts from Rubin’s book, Intimate Strangers (1983). In 2011, she wrote an article regarding her husband, Hank, who suffered from dementia (both Lillian and Hank have since passed, Hank in 2011, in the same year of this article’s publication, and Lillian in 2014). She described what it was like in her husband’s last days, her thoughts on family, and her experience at Hank’s dementia unit:
“A couple of decades ago, Christopher Lasch described the family as a “haven in a heartless world.” For us, it was such a haven, but our lives in the “heartless world” enriched and enlivened that haven and were a central part of the strength of our marriage and our family.
Now, he’s gone — and so is the haven. And the world does indeed seem more heartless.”
“I walk through the door — locked on the inside so residents can’t get out — and the show begins: Edward who, no matter what time of day, sits in the same chair near the door, head bowed as if asleep. I have the fantasy that he’s there in the hope that proximity to freedom will get it for him, but as I walk by, I say simply, “Hi, Edward, how are you?” He looks up, a blank acknowledgment that someone has called his name, and his chin drops to his chest again. As I turn the corner to Hank’s room, I see Molly, pushing her walker ahead of her and saying, “I have to go.” I smile at her, say hello, and ask her where she’s going. She stops, seems to be trying to figure out an answer, then repeats, “I have to go,” and sets off down the hall intoning, mantra-like, the same words over and over again. Then, Anna, who recognizes me with the same greeting every time, “You’re Hank’s wife.” I reply that I am, ask how she is. She stands silently for a moment, then repeats, “You’re Hank’s wife.” A few steps further along, I encounter Isabel, smiling the vacant smile that’s often a familiar feature of dementia. When I greet her, she bursts into song in a glorious operatic voice. She, of all of the men and women who live there, gives testimony to the complexity of the human brain. She doesn’t remember her name, but she can sing whole arias without missing a beat; she doesn’t recognize her grown children, but every Sunday morning, when a pianist plays old Broadway show tunes, Isabel’s voice accompanies the music with the words intact.
And Hank? If he’s not in one of the scheduled activities, I find him on his bed, surrounded by hundreds of pieces of paper. “Hi, sweetheart, what are you doing?” I ask as I walk through the door. “I’m working on my book,” he says — a book originally designed for cooks, professional and amateur, who, when confronting a recipe that calls for some foreign, unattainable ingredient, can find a local substitute on its pages. He started this project years ago, maybe a year or two after he’d been diagnosed with what the experts at the University of California labeled, “age related memory impairment.” When I trained in psychology over four decades ago, we called it “senile dementia.” Now dementia has a whole new array of diagnostic names, most of them sounding more “scientific” but meaning the same thing.
Over the nine years since that diagnosis, what was once a book has grown to an unwieldy 600 incoherent pages — an alphabetical list in tiny, illegible handwriting that has no meaning. And as he obsessively counts the entries and the pages, he proudly tells whoever is in earshot that he has 3,000 entries under the letter “C.” Maybe it’s a senseless exercise, but I prefer to think that, as with Isabel’s singing, it offers some connection, however thin, to the man he used to be, and gives some meaning to his largely empty days.
He puts down the paper he’s holding, looks at me lovingly, and says, “You’re so beautiful.” I smile, kiss him, tell him I’m glad he thinks so, and that I love him. Then we sit silently. I get edgy and make conversation, telling him what I did yesterday, what I plan to do today, recounting a conversation with our daughter, whom he still remembers, with an old friend, whom he does not. But there’s no one on the other side to send the conversation ball back. I know he’s becoming aphasic, that words don’t come easily to him anymore, and I try to be patient. I start to speak again, and he interrupts to ask, “What time is it where you live?” Where did the thought come from? I tell him that I live just a couple of miles from him and that the time is the same. He looks puzzled, checks the clock on his dresser, and says, “So what time is it there?”
Tears fill my eyes, I have no words, and we’re silent again. Not the companionable silence we used to know, but an awkward, uncomfortably empty one — a reminder that what we once had is gone. Sometimes after 30 or 40 minutes of this, he looks at his watch and says, “I guess you have to go”; sometimes it’s I who say it. What does it mean when he says those words? Is he as uncomfortable as I am with the silence? Is he also looking for something to carry the conversation forward and finding his incapacity to do it so intolerable that he’s relieved when I leave?
It’s one of the great difficulties in dealing with dementia: No matter how well you knew the person before, you have no idea what he’s thinking now.”
Rubin, Lillian B. 2011. “Mourning a husband who has not yet passed.” Retrieved December 15, 2016 (http://www.salon.com/2011/02/03/living_with_husband_with_dementia/).