Most of my friends mark the passing years by their children's birthdays, anniversaries, graduations and mothers' days. My clock of passing time is the face of my mother Cookie, who at 83 had a black out and found herself on the floor of the kitchen with her face badly bruised and a slight concussion.
Her husband was in no condition to understand what had happened and had no ability to help her as he was diagnosed with Alzheimer's. He could only tell me that, since she had fallen, she had changed. Everything was to change for me, as well. But my experience surviving the AIDS epidemic taught me everything I needed to know, especially how to ask for help.
It's such a painful decision to realize your parent needs assistance beyond what you can give her. And though I have an older brother, I became her sole caregiver. I would be the one to make decisions on her behalf and be her voice and her memory. It would be daunting, but I would fight like hell to help her survive the bumps.
The Beginning of a Change
When I moved from Cambridge, Massachusetts, to Los Angeles in August 1999, my mom and I flew out to California together with my two little dogs. I was starting over at 46 years young, divorced with my first twelve years of living with HIV behind me. My mom Cookie stayed until my furniture, my car and my beloved piano all arrived, a huge help -- and she continued to visit about twice a year for a week at a time.
It was always sad when I drove her back to the airport and watched her go up the escalator to her departure gate. I really hated the sting of that moment. I was much happier picking her up at the airport, seeing her arrive on the down escalator with that big smile, knowing our visit was just beginning. Our visits always seemed to go too fast.
But her last visit in 2011 marked the beginning of a change.
She was no longer able to walk down the block to a restaurant or around the park with my dog Romeo. She required frequent rests and naps. I would run errands and leave her at home where she said she was more comfortable. I had bought tickets to shows, to the Hollywood Bowl and planned for great things to do when she arrived -- but now it was all too much.
That was her last visit to Los Angeles. I knew she was no longer able to come see me, and I would need to go see her in Florida where she now lived. We spoke on the phone almost every day.
Seeking a Civilian Life
My life had been rudely interrupted by a little death sentence called AIDS in 1987. But I lived in perpetual youth mode. In 2012, I decided to live a civilian life for the first time in decades -- not thinking or speaking about HIV/AIDS very much, singing at fundraisers and having more fun.
Finally, at 58 years young I had a love in my life again. I felt rejuvenated. My heart was full. I hadn't felt like that since I'd been with my husband so many years ago, before HIV. I didn't need to eat or sleep -- I just needed the air that I breathed to live. I was that happy.
But nine months later it ended. I had forgotten how painful a broken heart could be and why I had avoided love and intimacy for so long. Shattered but stronger than I had ever been in past break-ups, I ran to where any young woman goes, home to mom -- not my childhood home but Florida.
It had been two years since I'd seen her. I had an inkling that something was wrong when I received a card from her and noticed her handwriting was squiggly when it used to be very neat and easy to read.
When I called her to let her know I was coming to visit she was thrilled. Then she said, "I just don't want you to be afraid when you see me. I've gotten old." I laughed and said, "Don't be silly mom. I know what old is. I just can't wait to see you. I miss you so much it hurts," I added as tears streamed down my face. I couldn't wait to get there to give her a hug and heal my broken heart.
Reality Hits Hard
But the picture I had in mind suddenly changed when I entered the foyer to her condo.
When I reached the top of the stairs there was a walker standing in the living room, and my mom was sitting on the couch with a caregiver watching sitcom re-runs with my stepfather. Her appearance had completely changed from the full-figured woman she had always been to weighing just 100 lbs. Her full voice was now soft and often hard to hear. My heart sank. It was a sudden hit of hard reality. Time had passed, and I could see it for the first time through my mothers' eyes.
It was clear I had to help them, forget about me and heal as I had often done before. After years of living with HIV, I was crisis trained. Driving my stepfather every morning at 6am to his "job" where he would nap for a few hours, then pick him up, drive him to the liquor store and bring him home. I'd go to yoga, the caregiver would be with my mom and Romeo would be walked. Often I found solitude in the car and cried my heart out.
I was no longer a young woman coming home to play with mom and do some retail therapy. I was now her caregiver and her power of attorney. My stepfathers' Alzheimer's progressed. His son reluctantly picked him up and brought him back to New Jersey to an assisted care facility close to where his family lived. My mom loved the warm weather and did not want to go up north. She wanted to stay near me in California.
Making Ends Meet
Cookie went into a reverse mortgage during the real estate disaster. Hemorrhaging unpaid bills, another symptom of aging, the condo needed to be sold. My stepfathers' family, unhappy about having to take responsibility for their father, took all the money out of their joint bank account.
So there we were -- just mom and I, a caregiver and my dog Romeo -- making ends meet.
Thankfully, I had checks from work forwarded from Los Angeles to her address along with my meds, but I missed doctor appointments for the next nine months.
No one wants to buy a condo in the summer in Florida unless you want to give it away! That's when I discovered Hot Yoga. Can you believe it? In the sweltering hot, humid summer weather of Florida I would go to a 105 degree studio six days a week for ninety minutes of moving through twenty-six postures. It was a practice of focus, balance, patience and faith.
I looked at options for my mom to see whether she could stay in her condo and share it like a golden girl or move to assisted care. Both frightened me. I began looking online at facilities in Los Angeles.
In the next month's conclusion to her story, Sherri Lewis shares her journey finding care for her mother, and reflects on resilience and the passage of time as a survivor of HIV.