Changing the Future of All Minds

BY BETSY BILLARD

She was at the top of her game not so very long ago. Countless accomplishments. Two successful runs in the New York City Marathon. Strong enough to ride a bike more than 200 miles from Boston to New York City.  She was so professionally successful that the New York Times cited her as one of the most powerful people on Broadway in a Sunday spread in the Arts and Leisure section.

My ex, Tanya, was so many things to so many people—to her 35 employees, to her family, to her friends and to me. She was a leader, a mentor, and she loved all of us deeply. I speak of her in the past tense but she is still with us today, although failing rapidly.

In the summer of 2013, I noticed changes in her. Changes in her ability to decipher what was on a printed page and changes in her responses. I’d occasionally ask her whether she was having any issues and she always blamed it on menopause. As the incidents continued, I knew in my heart it wasn’t menopause and I feared it was a neurological issue.

In the winter of 2014, I received a call from her current wife letting me know that Tanya was diagnosed with early onset Alzheimer’s. She was just 50 years old. I wasn’t surprised and I had suspected this was the case, but it rocked me nonetheless.

Since then I have been part of a very small inner circle of people who have watched her rapidly decline.

First it was her inability to read e-mail, so computer time stopped abruptly.  She was an avid news junkie and always watched MSNBC. By the time the 2016 election rolled around she was only moderately interested and one year later she could no longer tell you who the vice president was or what was going on in the news. Her eyesight deteriorated. She could no longer bathe herself or brush her teeth. She needed help eating her meals. All food had to be cut and she needed help with a fork. Often these days, it’s easier to pick up food with her hands.

Her care at home increased from a few hours a day to having caretakers in the home 16 hours a day. Her bathroom needs became compromised. She obsessed about clothing although couldn’t pick out anything she was to wear for the day.

Now she finds comfort in painting and in listening to music. Her world has shrunk down to that of a very small child, but without the joy. Her visitors are few, except for her small circle. Her dedicated and caring wife, her dedicated care takers, me and a few close friends.

Sadly, she still is still aware of her condition. There are times now when she does not recognize me. She doesn’t remember the houses we owned together in Los Angeles and New York. She doesn’t remember our dogs. Her vocabulary is garbled. Everything is a word salad. Nothing makes sense any longer.

Fortunately for her, I was not only her partner at one time, but I also was her financial advisor before that and I had the foresight to make sure we both had strong long-term care policies. Her policy is an older one with an unlimited lifetime benefit. Those are no longer sold, but for Tanya it has literally saved her. Her care is essentially 100% covered. Soon a decision will have to be made about institutional care, which always seems to be the hardest of dozens of decisions to be made. I try to see her every week but that isn’t always possible. I go to her apartment and we listen to music and her wife cooks a beautiful meal. Time spent with her is so important because the clock is running down. I met her when she was 35 years old and the world was her oyster. To see her fading away and the light dimming in her eyes is the heartbreak of my life.

I am profoundly grateful for what we had and who she has been to me—as a partner and forever as my friend. A world without her seems hard to bear. Alzheimer’s is a thief in the night, stealing the people we love. It cannot, thankfully, steal our memories.

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