I am no stranger to Alzheimer’s Disease. I watched my wife disappear into its fog.
I cared for Ginny, my wife, in our home, through the first seven years of her illness. It hurt me then; it hurts me now and during the past eight years I had visited her in confinement in an Alzheimer’s facility. I continue my visits, although I am now disabled, and in a wheelchair. I have witnessed the slow, seeping, and sweeping away of her senses and remembrances. As a victim, she remains unaware of what is happening to her. As a caregiver and a loving life partner for fifty-eight years, I am anguished.
When I see a person with Alzheimer’s, I see a gradually fading persona encased in the shell of an earlier time. Ginny has lost the knowledge of who she is: identity and past. She is unable to hear, unable to speak, and unable to walk. She has lost the ability to eat by herself, to use a toilet. Eventually she will lose the ability to swallow, even drink a glass of water. But – she will have the ability to die.
I have walked in the aura of fog surrounding Ginny. I should not have to live within that mist in the Assisted Living Facility (ALF), in which I am forced to live, having been swept into the dependent embrace of an institution. I don’t need to see what I see at Ginny’s “home” here, at my “home.” But, I do.
Zachary is a slob. He scatters his food all over the table, drops it on the floor, and spills it all over himself. Spaghetti with meat sauce is catastrophic.
Zachary may be singular, as far as his eating habits go, but he is not alone while he eats. He sits at one of half-a-dozen multi-person tables in the dining room at the ALF where we inmates – ooops! – residents – gather for our “three squares.”
Zachary sits at the dining table with Zelda. It’s snidely referred to as the “zombie table,” as the cloister of Alzheimer’s and other forms of dementia is referenced by some residents. Gentle Harold also sits there. Harold is not always gentle. He strikes out in anger on occasion. He often doesn’t know where he is, or where he wants to go; he spends a portion of his day pushing his walker around the front hall, or just standing, looking around inquiringly.
Short, chunky Virginia can’t tell where her room is. She waits for her husband - who has been dead for years. She was a constant smoker who suddenly stopped – she had forgotten she smoked, so neglected to ask a caregiver for her cigarette. Milo, reaching toward ninety-years-old, retains the authoritative life-habit posturing of a college professor, positive in his erroneousness.
We are collected from our apartments to gather in the dining room. Some travel under their own volition - when reminded - morning, noon, and night. There are forty or so RESIDENTS who live in our ALF. The correct number depends on who goes to the hospital, nursing home, memory center, or dies. (After all, are we not on the last journey?)
While Zachary and Zelda are table-mates, they are also coffee-drinking-mates, hanging-around-in-the-hallway-mates, sitting-in-the-entry-mates, resting-on-the-front-porch-mates, as well as a taking-a-walk-mates. Whether they are soul-mates is unclear.
But, they are kind to each other.
Sad to say, what bonds them as mates is Dementia. To my experienced eyes, each suffers a different degree of dementia. I suspect Zelda has Alzheimer’s sizzling on the grill. Zachary is cooked already - but medium-rare: he only forgets – to bathe, to clean his room, to change his clothes, to put them on right-side out and facing the correct direction. Where are the caregivers?
More important than his quirks, Zachary is docile and friendly. An occasional outburst, perhaps – but that’s Alzheimer’s speaking.
I’ve seen that behavior– in my wife. She is known as sweet Ginny. Reserved and quiescent – a kind word for everyone. I saw her crash her “merry-walker,” the cruelly named hard plastic wheelchair, into the walls of the Alzheimer’s facility. She cursed with each bang, a new vulgarity, as she slammed the wall. Where did Ginny go? I’ve seen in her the anger caused by Alzheimer’s. Sad to say, it explodes here at the ALF. Those who are victims require unique care from those who are especially trained.
Zelda is quiet, even taciturn. She appears alert to what’s going on around her – unlike Zachary, who at times seems confused. But she doesn’t readily speak. It’s hard to elicit words from her – even a “hello” might not get a reply. Her lips are drawn tight, so any emission slides from her mouth as a mumble, further hidden by the gravelly quality of her voice.
The situation of Z&Z is sad, but not uncommon in the world of ALFs. Pairing, suddenly, occasionally, or consistently, occurs in dementia and Alzheimer’s and – more euphemistically, “memory center” facilities.
Zachary looks like a big kid. He has a boyish face, full of wonder and discovery. His smiling eyes still bright and blue perch above an innocent, knowing grin, his spreading lips pushing up into plump, rosy cheeks. His face is shaped like a Mr. Planter’s cartoon, sans pince-nez and top hat.
But Zachary’s boyish countenance is tinged with the crinkles of age, those ineluctable slices in the skin. His once sweet face takes on a menace with deep lines and several day stubble of sharp iron-grey facial hair (Zachary is supposed to be shaved by a caregiver. Sometimes he aggressively refuses). Despite his look of youthful innocence, he can be mean, argumentative, and suddenly angry.
When I first met Zachary, I thought of him as an oversized student in an elementary school class room: uncertain, awkward, the “what do I do with my hands?” sort of thing. John Steinbecks’s Lennie, in “Of Mice and Men” sprang to mind.
That was Zachary when I first arrived at the ALF. Now, with wrinkles, and grey hair and a querulous, sometimes pained face, Zachary doesn’t talk much – except whispers to Zelda.
Zelda talks sparingly, too. In her deep, gravelly voice, she mostly responds; she doesn’t initiate conversation.
Zelda also has a tinge of memory loss. I happen to know her father-in-law, but when I mentioned him to her, she didn’t recognize his name, nor know who he was. She joins the weekly sing-a-longs with vigor, but afterwards can’t recognize the leader of the song fest.
What Zachary and Zelda talk about, I don’t know. I’ve not tried to listen in. Zachary gestures, and indicates they should move from where they are to another location. They slide away. Their day is spent sitting at the dining tables drinking coffee; or sitting in the lounge chairs in the entry drinking coffee; standing alone in the foyer drinking coffee; standing together out-doors on the front porch drinking coffee; or shuffling together a few steps away from the front door – coffee mugs in hand. I see them as I leave the ALF to wherever my activities take me, and when I return. They’ve stayed. They’re there. Nowhere to go. Nothing to do. How sad.
Zachary’s high voice doesn’t match the hugeness of his body. The softness of his speech, however, parallels the soft slope of his trunk, the slouched roundness of his shoulders, and his soft features. Zelda’s voice, her face, and body are all congruent: sharp, raspy, cracked, crinkled.
Zelda’s facial structure resembles the bone pattern of a chimpanzee. It is a lined map of longitudes and latitudes. A wide forehead descends to a sharp jaw line. The sides of her lips are drawn downwards. The wide field of wrinkles suggests a meanness, which may not be there, although I’ve yet to see her smile. Zachary smiles often, but occasionally appears confused and worried.
Emma also reintroduces Alzheimer’s into my life. Sometimes, she enters my room to ask where she should go. Other times, she reaches through the doorway, and lifts a tissue from the Kleenex box on my counter. A recent past invades my memory. I’m constantly reminded of Ginny at home.
Spotted throughout the dining room are small groups attracted to converse with one another by their lack of cognitive ability to sustain a conversation. Then, there are those few alone in their bemusements. Fortunately, not all are like that. And shouldn’t be – in an ALF.
* * * * *
Living here for seven years, I have a context from which to frame the current environment. It’s depressing: the emptiness left by the residents who have died, who you were recently talking or dining with; the melancholy from observing the weakened condition of some residents - those who now have to use walkers, who now require a caregiver to walk behind them in their walkers as they stumble forward, who travel to and from the dining room in a wheelchair, who forget where they sit in the dining room, or the location of their apartment, who can’t identify the names of other residents (“Happy Birthday to . . . WHO?” )
In this sad - lugubrious - atmosphere, I try to remain my (once?) happy self.
Why can’t I? I’m saddened by seeing the mirror images of Ginny, always reminded of the fog of Alzheimer’s. But more: I think I shouldn’t be here. I’m among old people, but don’t consider myself old. Fragile people, but I’m not fragile.
I workout. I teach at the University. I take adult education classes. I serve on committees. I write and publish. I volunteer in the schools. I am cognizant. Aware. Intellectually, creatively, physically engaged in living – away from here.
To accomplish my abilities, I have to leave the ALF. I escape to be with friends from my other life. Connecting with them, engaging in the things I love to do is my respite from being a resident. Despite what I can do, I can’t perform life’s everyday tasks. In that regard, I’m disabled. I may not like it. I may think it’s unfair. I am constrained. But - I have to be here. It is what it is. . . Isn’t it?