For the past few years, I wrestled with my conscience, debating whether I should leave Chris in his Long Island house, (which, for this lifelong bachelor, was wife, children and more) dreading the call that he had bled to death at the bottom of the stairs, or, wrest him from every semblance of security, and place him in a 24-7 facility, where only his physical body would be safe. I had hired home health aides, and done all I thought I could to keep him safe and confident in his house. My other option was to consign him to an assisted living situation that would wrench him away from all things familiar.
I opted for the latter.
After several months of nursing home hell, I flew up to New York to see him. I found him, unkempt, and unwashed, tethered to a wheelchair, in someone else's clothes, in a urine-smelling hallway by the nurses' station. "Oh, Lisa!" He immediately started crying, and held onto me as if I were his savior. He thought I was there to finally take him home.
But the plan was to transport him south, never allowing him to see his beloved home again, believing a visit there would cause us unnecessary stress, and him an unrealistic view of his future. Dave and I transported him safely, even making sure he had a good home-cooked dinner upon his arrival.
He never saw his beloved home again.
Chris's diagnosis became official 18 years ago. I had seen his shaking hands, and rather than asking him about it (I should have!) I asked my then-ailing parents about it. They said it was stress. Finally, one Christmas, as my parents and Chris were leaving, I again, noted his tremors. "Chris, I think you should see a specialist." He agreed without hesitation. The only reason he had not done so before, was most likely because my parents, in their own time of need, tried to will away the more pressing needs of their youngest devoted son.
Chris went to the neurology appointment, and was quickly, and accurately diagnosed with Parkinson's. My mother, already suffering from Alzheimers' Disease herself, was not able to comprehend her baby boy's situation, making the appointment all about herself. "What do you think about my hand tremor?" she asked. The doctor -- A brusque man, who initially came across as rude -- later becoming a staunch ally, kept her at bay. "We are treating your son right now. I will speak to you after."
In the ensuing years, I accompanied Chris to countless doctor appointments. I drove him into upper Manhattan to see a specialist to see if he might be a candidate for brain stimulation surgery (he was not). I took him shopping for groceries (He wanted mostly pasta). I took him out for lunches (his treat). I welcomed him to my home for every one of his Christmas Eve birthdays, making sure he was in the mix of his nieces and nephews, and enjoying his remembered childhood birthday foods -- Veal Parmigiana, Crespella, and a chocolate Christmas Tree-shaped birthday cake . . .
Fast forward . . . Company had already arrived. 26 family members milled around, playing with the kids, and chatting with each other. My cell phone rang. A Caribbean voice spoke: "This is ... from West Broward Nursing Home. Mr. Christopher was found unresponsive in his room, and has been taken to Westside Hospital Emergency Room." Numbly, I thanked the voice, hung up, and told everyone I needed to leave for the ER.
When we arrived, we were quickly escorted through the ER to a conference room. A young doctor began speaking. "Your brother came in presenting no vital signs. We worked on him for a half hour. I am so sorry to tell you, but your brother has passed away."
WHAT??? NOOOOOO! This is not true! Let me see him!
The young nurse led me to ER cubicle number 29. As I approached, I could see Chris lying in the bed. He still had a tube inserted into his mouth. For the first time in many years, his limbs were still. I held his still-warm hand, and stroked his head. "I'm sorry," was all I could say, over, and over. His hand was soft, and I felt him still there, holding my hand.
I dialed Dave's number. "My baby brother!" he wailed. Neither of us could comprehend what was happening. Where had Chris gone? Did he go on purpose? Did he give up? Was this his only escape from a life he hated?
I do not have answers. Really, the only question that both haunts my dreams, and keeps me awake, is, did I do this to him?
