The Visit

I’m sitting at the stoplight waiting for the light to turn green, fighting the urge to make a u-turn and drive away. I do not want to go in there. This is the point where I engage in the all-too-familiar battle with my conscience.
"Maybe I could put this off for a couple days."
"Don’t be ridiculous; you’re already here."
"I dread walking through those doors."
"Get over it."
"Why do I even bother?"
"If not you, then who?"

My conscience wins again; I go inside.

She’s in the sitting room. She is, as always, staring down at her hands. She appears to be troubled by what she sees; then again she appears to be troubled by everything she sees. The look on her face is always one of… I don’t know how to describe it… Confusion? Anger? Unhappiness? Worry? You’d think I’d be used to it by now, but I still find it very disconcerting. I wish she at least looked content – I’d even settle for no expression at all rather than this sad, afflicted face.

I drop to my knees in front of her wheelchair and she momentarily averts her gaze from her hands to look at me. I’m hopeful there will be a sign – maybe the slightest hint of a smile – some flicker of recognition. There is not. She immediately returns to studying her fingers. My presence is of no interest; her look of consternation never changes.

I wheel her out of the sitting room and down to her apartment. It is a space just large enough to contain a hospital bed, wardrobe and chair. We put some pictures on the walls when we moved her here, but she never looks at them. I remember when we thought it was so important to have familiar things around to make her feel at home. We thought we were doing it for her, but I realize now we did it for ourselves; to assuage our guilt. We wanted to make her room look less stark; less institutional.

I face her wheelchair towards me and sit on the edge of her bed. She glances at me briefly, then her eyes wander aimlessly around the room before returning to her hands. I try my litmus test: I start dancing wildly, jumping up and down and whirling around in circles – making as big a spectacle of myself as humanly possible. I stop to search her face for a reaction. There is none. I knew there wouldn’t be. Two years ago that would have elicited a smile, but now… Now I could stand perfectly still in front of her or I could ride in on an elephant with my hair on fire and her response – her non-response – would be the same.

I gently lift her chin so she sees my face and I say, “I love you.” Nothing. I grab the whiteboard, write: I LOVE YOU in big block letters and place the board and marker in her lap, but she doesn’t acknowledge it. It bothers me that I can’t remember when she stopped being able to read and write. At one time I actually kept track of every disappearing ability; every cruel subtraction. I marked the day when she could no longer use stairs, no longer dress herself, no longer walk unassisted, no longer brush her teeth. I know exactly when her behavior changed; when this genteel woman started yelling, hitting, kicking and biting. I can tell you when she became incontinent, when she could no longer get out of bed, when she could no longer feed herself and when she could no longer speak. I know when I last heard her laugh; it was three years ago.

This is her life now. Not a life, really – ‘existence’ would be more accurate.  She sits in her wheelchair staring at her hands hour after hour, day after day, week after week, month after month, with that distressed, sad face.  She is alive because three times a day someone pushes a spoon between her lips, forcing them to part just wide enough to slip a blended concoction the consistency of baby food into her mouth.  To be more specific, she is alive because her involuntary swallowing reflex is still functioning.  She thought her Living Will would prevent precisely such a putrid existence, but she was wrong.  Living Wills don’t cover dementia.  There is no legal provision for what can be done (or not done) when the body continues to function long after the mind does not.  She is forced to languish.

I go into her bathroom and although it appears to be clean, it smells of urine. It always does – they all do. I conduct my usual routine: scrub the wheelchair, check the bed to see if the sheets are clean and dry, change her diaper and examine her skin for bedsores, wipe off her shoes, file her nails, wash her face and comb her hair. As always, her mouth is full of food; sort of a mushy mixture of saliva and whatever she was fed for breakfast.  My attempt to brush her teeth is only moderately successful; the futility of it all prevents me from trying to do a better job.  Lastly, I massage her shoulders, but if she’s able to derive any pleasure from it she is unable to express it.  A couple years ago she would have responded with a sort of guttural purring sound, but now... nothing.

I wheel her back down the hallway to the sitting room. Those few who are still able to function are partaking in the morning activity: playing with beaded necklaces. I pick one up and lay it across her hand, but she lets it drop so she can continue to stare at her fingers, unencumbered. I put my face in her line of vision once again and say, “I’m going now. I love you, Mom.” She looks at me (or rather, she looks at this figure obscuring her view of her hands) with that perpetual distressed stare and I suddenly feel a wave of panic wash over me because I can’t for the life of me remember her smile.

I turn to leave and as I’m walking away I try to console myself with the knowledge that at least she’s not in any pain, though I’m not sure I’d know if she was. I’m suddenly struck with a terrible thought: could the constant look of angst on her face be pain? Oh my god – is it possible she has been in pain every day for the past three years? I stop, lean against the wall and close my eyes in a vain attempt to halt the tears. I haven’t cried in years and suddenly now I cannot stop. I say a silent prayer apologizing to her for my inability to do anything to help her; I ask her forgiveness for allowing her to endure this dismal existence and I desperately try to tell her how much I love her. I stand there, leaning against that wall for a long time – absurdly trying to communicate with her telepathically and even more absurdly hoping I’ll hear a voice in my head saying, “It’s okay, honey. I understand.” The voice never comes.

I continue down the hallway and pause for a moment to steal a look at the man in room 227. He’s sitting in his chair in front of the television. On the off chance he might recognize me, I dart past his room and quickly make my way to the exit. I punch in the code and push the door open, dutifully ensuring it locks behind me. I feel guilty. I know I should have stopped to see him, but I just can’t bear it. I’ll come back tomorrow to visit my father.

-December, 2008

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