Spotlight: Kathleen Van Cleve

Each week we will be picking members to spotlight to tell their Alzheimer's story and why they are running in this year's New York City marathon. Check in each  Wednesday, Friday and Sunday for new updates on who will be spotlighted and get to know your teammates...(each person is picked at random) 

I think, on reflection, that I’m a person whose basic good luck over forty years wrecked my notion of what is “fair.”  Things came easily to me, mostly; I’ve had a bunch of jobs, with accompanying failures but more often successes; I’ve had good health - that includes the running of three NYC Marathons (‘88, ‘98, ‘99); I married my Prince Charming and have two terrific sons; and I had, most importantly, an incredibly tight-knit family headed by a mother and father who encouraged, supported, and loved me no matter what.

And then, at around the age of forty, things changed.  My father, with the brain of a 25 year old but the body of a 100 year old, died in January 2008, after six years of intermittent but persistent health concerns.  Within six months, my mother – my rock, my drill sergeant, my cheerleader – had a gall bladder operation that in retrospect was the final trigger for her descent into Alzheimers.

My siblings and I – there are four of us, two boys and two girls – now think Mom was showing symptoms of Alzheimers prior to 2008.  For sure, she seemed fairly gregarious at my father’s funeral – an odd behavior we thought was due to the stress of caregiving for so many years.  In March, at Easter dinner, she seemed shaky and told us she was going to go work at her alma mater because assuredly, Temple University would remember her.  (She had received her Masters from Temple in 1956.)  And then in July, at the hospital for her gall bladder removal, she wouldn’t/couldn’t sleep and by the third day – in restraints, agitated, confused – she pleaded with me: “Kathy, please go into the kitchen and get me a knife to cut these things off.”  I told her as gently as possible that I couldn’t, but that she should try to go to sleep.  She said she would.  And then, seconds later, she’d politely repeat her request as if she had never asked me.  I did my best to convince myself she was just overly-tired.  My mother, Lucy Falciani DeMarco, could not have Alzheimers. She was too smart, too proud, too disciplined, too savvy.  What was going on, I insisted to myself, was that she had a stressful life, and this was a stressful time, and her brain wasn’t used to working this hard.  After she got home from the hospital, she would be as good as new… which meant that she’d go right back to being there for me, whenever I needed her, because that’s what moms did, even when your children were no longer children.

This is what forty years of good luck will do to you.  It will make you think that God and the universe owes you, who has received so much; it will make you think that your notion of what it means to be a child is as unmoving as a redwood tree.  Your belief in this forever childhood is so unyielding that it takes Alzheimers – as strapping and strong as the meanest lumberjack – to literally uproot the redwood before you start to realize that your hold on childhood is fundamentally messed up; that yes, even your mother – your very own living angel – is not, cannot, be there for you anymore. She is sick, very sick, and it is your turn to be present, to support her, to love her, no matter what.

Today, when I visit my mother at her Alzheimer’s care facility, she beams, grabs my hand and searches for words to explain something that is 100% evident to her, but not to me.  “You should come with me,” she’ll say, “and we can go to those people, I mean, well, wherever you want, I want to go, no, this chair?  Ok.  I’ll do whatever you say.”

Luck again, of course – Mom hasn’t become one of those patients who hurl food and names at people.  She isn’t in pain and she smiles a ton.  She kisses my cheek over and over, and she giggles, particularly when she shows me a new piece of costume jewelry that my sister or I have given her.  But I still struggle because – and this is the hard part - my mother was never, ever, a giggler.  Nor was she ever particularly demonstrative with kisses or holding hands.  I don’t mean to imply that my mother wasn’t loving.  She was ferocious in her love for us; she would have run into burning buildings, slayed lions or otherwise lifted the universe itself if it meant that her kids could sneak in underneath and grab a bigger, better piece of life.  But she wasn’t this sweet, old Italian lady who kisses everyone on the cheek.  My mother was so different from this person she is now.  The child in me – that stubborn little girl who feels so wronged – rages against the disease; where have you taken my mother???  But the adult in me is learning, slowly, that this is woman in front of me is my mother, and I try and try to make her feel as beloved as she has made me feel for my entire life.

This is why I’m running the NY marathon.  I run to raise money, of course, to cure this disease.  I run as a kind of mental therapy so that the loss of my mother in real time is somehow less painful through the routine of an almost-daily run.  And I run as a daughter long overdue in becoming an adult, so that I can remember who my mother was and who she is - no less than the most important person in my life.