When I was eight, my mother fell. She was beside me, holding my hand and then she wasn’t. Her foot slipped beneath her, on ice, and down she went. It was the first time I witnessed my mother as vulnerable. It wasn’t long after that, that I began to worry about my parents and death.
At that age, it was as much about me as it was about them. What would happen to me if they were no longer here? The fear of losing them would come and go over the years, often to return when I’d lose someone close.
In my twenties, I moved to Hollywood for a career opportunity. I planned to stay for a few years and then return to New York. But a funny thing about Los Angeles—with its mildly discernable seasons there was little sense of time passing and with the preponderance of plastic surgery there was little sense of mortality, so I remained for twenty-eight years while my parents lived out their lives on the East Coast.
It was 9/11 that brought me home. Nothing I was doing on the West Coast was important enough to keep me there any longer and the need to be close to my family tugged. My husband generously agreed, and together, with our dogs, we drove east.
Soon after we settled, my mother was diagnosed with Parkinson’s Disease. PD is an unforgiving disease, not as bad as most, but it is progressive and watching a parent disintegrate in its clutch is difficult.
“Can you notice it?” my mother asks covering her mouth with her hand. She has been living with Parkinson’s now for seven years. We all have.
“Let me see,” I say.
Tentatively, like a child, she pulls her hand away and smiles self-consciously. Somehow, she has broken a tooth. Once beautiful, she remains, at eighty-four, concerned about her appearance. Her dentist wants to pull it, replace it with a bridge. I tell her the truth; it is barely noticeable which offers relief since she fears surgery.
I watch myself reassure her, take her hand. I am now the parent, the caretaker of my mother whose life has been spent caring for us.
My mother has had a fear of drugs her whole life. She has never taken anything more than aspirin and has avoided even this. Her mother died at forty-two, having been given the wrong drug for an asthma attack in the emergency room of a hospital. This was before anyone ever considered suing a hospital or a doctor or nurse for malpractice.
And now it’s pills, pills, pills. Parkinson’s is controlled by strong, steady medication, four times a day. Without carbodopa/levadopa, my mother’s body is unable to move. It’s impossible to realize how devastating Parkinson’s is until witnessing someone without their medication. As her disease progresses, the doctor adds another pill to sustain the power of the powerful drugs she already takes. First, selegilene, which has left her hallucinating. He takes her off that and on to Azilect. Two days on this and she has severe pain, tremors and her blood pressure is rising. We monitor her blood pressure as the pills wear off and get rid of them, after paying for a month’s worth. Now what?
The last thing we want to do is increase the carbodopa/levadopa since it will leave her with nowhere to go as the disease marches onward and upward. The doctor prescribes NuVigil to keep her from getting sleepy, which is a side effect of the Lexapro she takes to quell the anxiety associated with PD. Since it is not generic, NuVigil is not covered by their insurance and thirty pills, a month’s supply, costs $350. I discover through research on the internet that NuVigil has replaced ProVigil, the same medication which remains on the market. It seems that ProVigil was about to lose its exclusive patent and go generic but to keep their profits going strong, our Big Pharma friends, came up with a new name for the same pill! For the same month’s supply, ProVigil is $42.00.
