Monday, August 6, 2012

My Dotty

Connecticut, you've done it again. I've left part of my heart in the Constitution State, and unlike the first two times, I won't be getting it back. The initial wrench was when I left Lucy, my firstborn, at college in 2000. I said goodbye and drove two hours to the airport with tears blinding my vision. When I got to the ticket counter I begged to get on an earlier flight home. I needed to see Lana and Allie. Eight years later I went through it all again with Allie, my last born. I came back to California, but part of me was still there with her.

Fast forward four years. College for Allie was a smashing success. She has graduated and best of all, returned to California. Southern California, but still, so much closer. I just had one more goodbye and it was a doozy.

Dotty married my father in 1965, when I was seven years old. She's been in my life ever since even though Dad rudely left her after fourteen years. After my stepbrother was killed and Dotty lost a breast to cancer. My father chose then to be his worst self and look for another life. That was the beginning of the end of our life with Dad.

Ironically, Dotty took my father away from my mother (and ended her own marriage as well) but then she gave him back to us. She adored him and thought the four of us were wonderful extensions of the man she loved. She valued us and she kept us all on a schedule and together as a new family with her two children. Even though we lived two hours away we saw them every other weekend and every vacation.

Dotty and Dad worked in schools so they had the summers off. We took the epic trip from New York to Florida in the VW bus, camping along the coast. They bought an old boat, Xanadu, but with six kids there wasn't a lot of spare cash. We had big, family dinners at home. Dotty cooked for everybody. I don't remember all of us eating out in a restaurant except for the occasional breakfast on a road trip.  

“Dorfy” was strong willed, so bright and very affectionate. From our earliest days together we bonded. I'd crawl in her lap and comb her hair, which she loved. We had a special hairstyle for her that we called a "Poofontay". She made us all play recorders and wear matching sweatshirts with embroidered initials. A librarian, she shared her love of books and reading. Dotty made me feel special and loved.
Wendy, Doug and Dotty - hair combing

Fun loving Dotty really enjoyed children and vice-versa. My girls got to know her as they grew. We'd visit and always get up to some kind of adventure. Synchronized swimming in the pool was hilarious. She was never too old to get right in there with the kids and have a ball. One year we formed a club with her called "The Red Devils and Black Dragons". I can't remember the point of the club, but one of the by-laws was that you had to wear one of her crazy hats during meetings.   
Dotty and Lana

Now Dotty's life is in limbo. At eighty-seven she has a dreadful disease. A God- awful confluence of symptoms - it's the worst of Alzheimer's and Parkinson's. Called “Lewy Body Dementia”, this disease has cured my lifelong fear of cancer. I've seen loved ones dies from cancer. It's horrible. LBD is a nightmare that lasts for years. She's probably five years into the disease with several more to go before her body shuts down completely.
Now Dotty is in a wheelchair, but keeps trying to walk. One of the symptoms of Lewy Body is that there are "good" days and bad days. It all looks bad from here, but when we visited she was able to recognize me. It made her cry to see me. She knew I would leave her again and became agitated. Yet, she was able to crack a couple jokes. One minute she can't get the words out, the next she says something you understand. That's what so horrified me. She KNOWS. She knows she's trapped in her own body, not getting better. It just seems so unfair and wrong.  

My stepsister, Ann, has Dotty in a wonderful facility right near her house and she is an angel to her. I do not know how she does it. I guess you get used to it, but I don't see how. In a previous visit Dotty was in a different care center. Allie and I took her swimming in the pool there. I knew she was having some dementia, but it was nothing extraordinary. That was two years ago.

Dotty has classic symptoms of Lewy Body Disease. It started with visual hallucinations. She was talking about drain bugs for a few years before any other symptoms were noticeable. It also makes victims prone to falling and several falls were the beginning of the trip down. Into the hospital, in long term care, out of her own home. The predictable pattern repeated by so many of our elders. Knowing what I know now, seeing what I've seen, I wish one of those falls had done her in. Knocked her out cold. We probably wouldn't have known it was a blessing.  

It was so hard to see her - unable to feed herself, struggling to speak. Even now, if I really think about her and how she is I feel almost hysterical. Such a wrench knowing I can't do anything for her and will never see her again. Annie loses her Mommy over and over again - every time she sees her. When Dotty goes, Ann has to lose her once more. When someone has died the sadness eventually eases. The traumatic images are replaced by better memories. This unspeakable limbo seems so unfair. I know Dotty never wanted to be like this, but here she is. There is no healing, no closure, only the prospect of something even worse.

A couple years ago Dotty and I talked on the phone. I was in California and she in Connecticut. I apologized for not calling more often. She said, "That's okay, honey. I know how much you love me." Thank you for that, Dotty. For knowing and for loving me so much. And thank you, Annie, for taking such good care of Dorfy.   

Photo: On the trip from New York to Florida with all six kids. I'm the one in front with the camera.