Everything I do these days...

     ...that used to be so important to me is done in fag ends of spare time. Everything I do that doesn't relate to basic health care, the spoon feedings, the dispensing of medicine that gets spat out, food that meets the same fate, constant changing of diapers, sheets and clothes, everything I thought was so important until Saturday is now relegated to the ever-growing back burner. Typing of old material, especially writing of new material, auditing chapters from narrators for three audiobook projects. Vaya con Dios.

      I've never been in this position before, raising a toddler in their mid 60s. Toddlers at least, have the ability to learn from their mistakes. That's not the case with me. Gross and fine motor skills get degraded, never to be remastered. Memories are held onto as if they're smoke.

      It's not the constant babbling and getting mauled that affects me so much as the ever-haunting sense of failure that will one day culminate in an even more massive, crushing failure, one from which there is no return. Like any good Irishman, I hate my enemies with a passion but even I wouldn't wish this on them.

      From my time working in nursing homes in the 80s and 90s, I discovered right off that nobody wants to be in them. Not the staff, not the Joint Commission and state inspectors not the families and certainly not the residents. Old people, especially old ladies, become invisible. Funny how that never truly became known to me until these days.

      I remember one resident whose name was Regis. She was directly descended from the Boston Fitzgeralds (Yes, THAT family). She used to brag that she went to Rose Kennedy's wedding, and had the photos to prove it. Day after day, she'd stand in the doorway of her room, nattily-dressed, her purse over her right arm, waiting for Fitzgeralds and Kennedys, glittering American political royalty who would never, ever come. Regis became, in my mind, the perfect synecdoche for almost every nursing home resident on the planet. I wrote a good poem about her. In fact, I think it was the last poem I ever wrote before I stopped entirely that month (the month I got signed by a literary agent).

      And, as proof that no one wants to be near anyone even caring for someone with dementia, when I put out my post on Facebook announcing I was taking a hiatus, I immediately lost five friends and more from my book group.

     Harry Truman once said being president was the loneliest job in the world. I would challenge him to care for someone with advanced dementia for just a week and to still stick by that assertion.

     But even more heartbreaking than that poem I wrote about Regis, one that's never seen the light of day, is a picture, one that I'd taken on August 16th. I remember the date because it was our friend's birthday, the same one who'd taken us to Concord last Friday. I wanted to take her out to a new Mexican restaurant that had supplanted the last one during the thick of the pandemic. After lunch, she and Mrs. JP stood in a neon-lit alcove that they put up so people could have their picture taken there.

     It's so heart-breaking for more than one reason,.One is the contrast between our friend's sunny smile after a good meal and the heartbreakingly sad look on my girlfriend's face. She's looking down, ever-abiding sadness in her blue eyes, as if she's wondering, "Where am I? Who's this next to me? What am I doing here? What's happening to me?"

     She already looks as if she's becoming invisible and she's barely aware of it, someone who used to be alert and astute now possessed of barely enough self-awareness to know she's being erased line by line by some cruel celestial artist until there's nothing left but a faint outline of the person she used to be. And, in time, even that will be gone.

     It's the tear-jerking look of a woman at odds with a universe that's supremely indifferent to how its subtractions from our lives are affecting us, the wanton maleficence of an unchecked, dead force. The very sight of that photo makes me burst into tears.

     Friday in Concord was the dividing line in our lives. By the next day, she was completely out of her mind and she'd stopped eating. By Sunday, she couldn't walk and, even with my help, collapsed in the parking lot. 

     So what can I do about this? Half walk-half carry my girlfriend to bed, then write about it after midnight. I'm a writer. It's what I do. It's how I cope. Hence the poem about Regis 26 years ago. It's how I cope, memorialize others while trying to establish some small but vital remove from it in some tiny yet all-important way.

     But there's no blessed separation from this. She's all I have, even in her tragically depleted state, and I'm all she has. Is it possible to love someone who's no longer there? I'm finding out the hard way and the answer's Yes.

     And can you miss and pine away for someone who's still physically there?

     Again, yes.