Life Within These Walls

Because there is currently no cure, prevention, or slowing of dementia, families and caregivers face the ultimate question: when is enough?     When does a person’s quality of life lose all substance and leave them with something that can no longer be called life, just a constant state of confusion or anger or fright?  Who gets to make that determination?   

When my mother is still living at home, my father and I have whispered exchanges about a future conversation to discuss when we should stop giving Mother her pills.  We have no idea whether these pills, which she hates, are even doing any good, but as long as we keep up the façade that they are slowing the disease, we are still conveying to her that she is important to us and we have not given up on her. 

These hushed conversations never yield a plan, as Mother goes straight from the hospital to the Memory Unit, and the staff takes over the onslaught of new pills prescribed for her.  No one survives Alzheimer’s, so all residents of the Memory Unit are required to be DNR, do not resuscitate, because, well, isn’t living with the disease torture enough?  Why bring someone back just to let them continue suffering?

NewGuy visits the Memory Unit for day care until a leg injury keeps him in the facility for an extended stay.  In his seventies or eighties, he adjusts poorly to the doctor’s order that he put no weight on his leg.  Unwilling to wait for Nurse’s assistance, he tumbles out of his recliner and pulls himself, inch by inch, to the unlit bathroom.   Nurse finds him there, sprawled across the tile with his head under the sink, and asks what he thinks he’s doing.  In a quiet, well-mannered tone, he says that the floor on his cheek is nice and cool.  A tremble in his voice belies his tears pooling on the tile.

NewGuy is not a large man, but he is tall, and with atrophied muscles, he is dead weight.  Nurse cannot lift him alone, so she stands in the doorway and lectures about consequences.  “You can’t keep doing this, NewGuy,” she says, sighing.  “You’re too heavy for us to lift, and if we can’t lift you, you’ll go to a nursing home.”  When the other nurse finishes helping another resident, they ease NewGuy off the floor.  NewGuy does not stay at the Memory Unit long after this, and I hear different reports from different nurses as to his whereabouts (another facility, the hospital, his home).  I pretend that wherever he is, he is comfortable.

Meanwhile, the makeshift family of the Memory Unit continues.  Gatherer carries a baby doll that opens and closes its eyes depending on how the head is tilted.  She seems to be the only one who does not realize the difference between skin and plastic, as several residents ask why she is holding a doll.  But she cradles that toy like it is her life’s calling.  Mostly, the baby sleeps, but one evening Gatherer realizes it does not move on its own, and she cries over the dead baby in her arms.

She eventually throws the doll on the floor and wanders the hallways, scooting past HeyYou on the couch.  “Hey, you,” he calls to Nurse, “where’s my highball?”  Nurse ignores this outcry until HeyYou stands and toggles his weight from one unsteady foot to the other. 

“My name’s not ‘hey you,’” Nurse addresses him in an even tone, “and you are not supposed to walk around without your walker.”  She slides the octogenarian his walker, complete with tennis balls on the base.  He nods his thanks and leans forward. 

Lowering his voice, he asks again, “Where’s my highball?”

“Sorry, we’re out of scotch,” Nurse replies without skipping a beat.  Her attention turns to LadiesMan as HeyYou slumps back onto the couch.  Defeated and demoralized, he touches the tips of his fingers to his forehead and asks, “What kind of father doesn’t buy his son scotch when he visits?” 

LadiesMan rests in the rocking chair nearby, watching the proceedings.  He just sits, waiting for supper, until someone notices that he is not wearing any pants.  His jeans are arranged on his lap, but he does not have his legs in them.  Upon further inspection, Nurse realizes that he is not wearing anything below the waist. 

“What are you doing?” she asks. 

LadiesMan shrugs.  “I was hot.” 

Nurse holds up a blanket to shield him from the rest of the residents.  “Let’s go back to your room and get you dressed,” she says. 

“Well, I don’t care,” he explains, “I’m not embarrassed.”

Time passes at the Unit in a way unique from the world outside its walls.  It seems to slow down and speed up in odd increments. 

NewGuy returns as a permanent resident.  He is thinner than I remember, but his mobility is still an issue.  So afraid of falling, he barely moves his feet when the nurses help him to the table or out of bed.  He is dead weight, and he knows it.  Quietly and politely, he tells Nurse that he does not want to sit in the living room after meals, and instead spends hours in a wooden dining room chair, gazing out the windows at the gray, sub-zero winter sky. 

Though they do not say so, the nurses seem to know that NewGuy will not be staying long.  He smiles politely, but the dullness in his eyes betrays his understanding of what the Unit is and why he is there.  After a few weeks, NewGuy spends all day, every day, stretched out on a recliner in the living room.  He sleeps almost constantly and refuses most meals.  He is ready to go, and the staff make him as comfortable as possible while he quietly passes away.

On a few occasions, Gatherer stops breathing.  Nurse shakes her shoulders, and Gatherer’s breathing picks up again.  This seems to frighten Gatherer, and she becomes much more subdued.  The facility puts her on hospice and prepares for her passing.  Her health declines for several days, but her family does not spend much time with her.  During what seems like her final breaths, Nurse holds Gatherer’s hand.  Since Gatherer’s family is not there, Nurse tells her that she is loved and has been an important part of the Unit’s family. 

To everyone’s surprise, Gatherer rallies.  Her health seems to improve, which infuriates her family.  They accuse the facility of reviving Gatherer in order to keep billing them.  Gatherer’s daughters move her to a facility in a nearby town within days of her recovery.  The official reason is so she can be closer to family, but, unofficially, it seems like Gatherer’s family is more ready for her to die than she is.  What else would motivate someone to move a ninety year old woman with dementia out of the only home she’s known for the last four years, especially when it is filled with people who know and care about her?

The Memory Unit is the last home for most of the residents who pass through its doors, but life still continues inside. 

HeyYou finally gets his highball.  Every evening before supper Nurse mixes his drink on the rocks, and he sips it down at the dining room table.  Nurse retrieves the empty glass as HeyYou scoots off with his walker, a new air of dignity in his posture.  “This is the first time I’ve ever been required to mix a drink based on doctor’s orders,” Nurse admits, chuckling.