He’s seen this episode. In fact, he’s seen them all, at least five times. And I wish I were exaggerating, but I’m not. He spends all day sitting there, struggling to catch enough breath to rise from the chair and move to the bathroom or kitchen. Unpaid bills lie buried beneath piles of unread magazines, and unread correspondence from friends. His world is the television. If it’s not NCIS, it’s Law & Order, or House. He doesn’t remember what he’s watched, and he talks to the characters like they can hear him. He knows their backgrounds, what makes them tick, and speaks of them with a reverence that he only used to speak about people he really knew and cared about. He will sit all night in front of the mindless glow.
This was the cycle of our lives for several years.
My dad has dementia. He is 67 years old.
Dementia is an irreversible, degenerative loss of brain function, of which Alzheimer’s is the most common. Memory, thought, speech and behavior are the most noticeably affected. Though some medicines can potentially ease symptoms, there is no cure or treatment. According to the Alzheimer’s Association, over 60 percent of family caregivers report high levels of stress due to the prolonged duration of the illness and 33 percent report symptoms of depression. I spent my 29th birthday listening to a neurologist tell my father that his condition was growing rapidly worse, and his lost memories weren’t coming back. Dad didn’t understand a word of it. That night, as we cut the cake, he said “Thank you for breakfast.”
Birthdays have been unfortunate milestones of this journey. Three days after I turned 26 was his first heart attack. Mom didn’t even tell me immediately when it happened, because she knew I was neck-deep in my thesis, and though her intentions were good, the fact that she kept it quiet let me know just how severe it was. Dad had stints put in to open up the arteries in his heart, and was given new diet and exercise instructions. Thousands of miles away, through a wavering phone connection, her voice was tired, but optimistic. She said “we’re going to come through the other side of this stronger, and better than ever.”
What happened in the short time since that hopeful long-distance phone call was a rapid degeneration of both body and mind, a fast and furious meltdown brought upon by causes both intangible and entirely preventable. How long were the signs there? When we were growing up, sometimes we would be out to eat in a restaurant, or watching a DVD at home, and Dad would ask “Do I like this?” We’d laugh and say “of course you do, silly.” Because it was funny. We were joking. At least I thought we were. Most people who survive a heart attack see it as a second chance, a new lease on life with their families. Dad ignored the doctor’s advice. Actually, he flaunted it. He refused to use an ordered sleep apnea machine, ate whatever he wanted, and sat in front of the TV all day. Boxes of papers and books from his old job sat untouched in the spare room for months. I finally just put them in the basement because he adamantly refused to address it. He rarely changed clothes or showered. We suggested he speak to a therapist and he angrily dismissed us. And then... he forgot. The names of people he’d worked with. He couldn’t remember directions to places he went every week. In the car, his anger would rise quickly and often, yelling at other drivers, speeding, cutting them off. He repeated stories and jokes he’d told only a few minutes before. Before we could switch our primary appointments from cardiology to neurology, his heart failed again. Instead of seeing my first play produced in New York, he had a metal valve inserted into his heart, along with a double bypass, and a small hole sewn closed. He was on the operating table for well over six hours.
In more self-pitying moments, I freely admit to feeling so completely screwed over. Why am I dealing with this now, while so many of my peers have healthy parents, successful careers, supportive partners, and happy lives? There is no answer. When I was young, and my grandfather was dying, Dad half-jokingly said “When I get to the point that I can’t take care of myself, I want you to take me out back and shoot me.” Granted, that’s a fucked-up thing to say to a nine year old, but it comes to mind frequently as I put on his jacket for him, or wheel his chair into the next doctor’s appointment. I wonder if he remembers having ever said it. I look at Dad, and think “He’s had so many chances to change his behavior for the better; to eat well, follow through with the physical therapy, heed the doctor’s orders, and he refuses to. I just struggle to keep in mind when his demeanor oscillates rapidly between frightening and heart-breaking that this isn’t the man who raised me. It’s all that’s left of him.
This is such a personal, frightening experience, it’s easy to cut off contact and move into isolation. Friends are too busy starting their careers or falling in love to understand what you’re going through, so you feel this is something that can only be dealt with alone. Bringing a new person into my life is daunting. Who would ever want to be part of this mess? It is so easy to close yourself off. Isolation conjures up a terrifying darkness I never knew I had inside of me. In this instance, being solitary is no longer synonymous with independence, it is with fear and loneliness When I met P, I was so thrilled that someone wanted to come home to me at night, and hold me when I slept that I overlooked huge red flags in his behavior, simply because I was so desperate for support. I’d wanted someone who would take care of me every once in a while.
Today, Dad lives in an assisted living facility. There was no other choice. And it is slaughtering us every single day, emotionally and financially. It's only been for a few months, and it hurts every time - going home without him feels wrong. As for his mind, the tape loop is shorter. Now he has on average about two minutes before he begins to repeat the same phrases, questions, outbursts that make no sense. The deep laugh I once loved to hear now puts me on edge- he laughs too long, too loud, at situations that aren't funny. It scares me. I doubt it will ever feel ok, but it's our lives now. I can't change it, so I will keep on.
I think it is impossible to feel ready for this. You can't really prepare for it. The strain is great, and more often than not we find ourselves dealing with situations far beyond our years. We are going through hell. We are trying our best.
And we are most certainly not alone.
