never knew my mother's favorite color. I realized this only after she died, while shopping for her burial outfit. I knew I wanted to lay her to rest in a pretty dress, something smart and fashionable. But I didn't know what color she would have wanted, just like I didn't know so many other things I should have asked her before Alzheimer's disease took hold.
Sometimes I think she didn't want to be known. With her curly black hair and dark sapphire eyes, Frances Eileen McGivern was a proud beauty, classy and distant, even to her four daughters. She wasn't one to give kisses or hugs. When I tried to hug her, she stiffened and her arms stayed loose. Before we realized she was getting Alzheimer's, she'd sting us with the things she said. Things like, "I never wanted girls."
Although she didn't show much affection, my mother did love us. She always told us to be proud, even when we were living in Burton, Ohio, without electricity or indoor plumbing and had to use an outhouse. For her entire married life, she worked long hours in grocery store meat departments so my father could get a graduate degree in art and we all could go to college.
Frances Eileen inherited her pride and independence from her parents. My mother's mother, Mary O'Brien, came from a family of working women who ran coal yards in the docks of Ireland and England. My mother's father, Michael McGivern of Newry, Armagh, in Northern Ireland, was a member of Sinn Fein and the Irish Republican Army. He gave speeches in Gaelic when it was illegal and blew up ammunition on the docks. When the English came to arrest him, he escaped to the United States, leaving Mary to raise their five children by herself until he could afford to bring them all to America. He sent money to her via the town priest so his location couldn't be traced. It was my grandfather who taught me never to leave the people I love without a kiss and an "I love you" because, as he used to say, I might not see them again.
My mother adored her father but didn't heed his advice. She used to leave without saying goodbye, and I doubt she kissed me 20 times in my entire life.
I think marriage and babies derailed my mother's dreams. She was the first in her family to finish high school, and she found a job she loved working in a department store as a fashion and cosmetics buyer. But she was helpless when it came to my father. She loved him deeply, so deeply that she looked past his inability to hold a job, his problems with money and his constant criticism of us. Because he was an artist, a dancer, a truly creative soul, we had it hard. Sometimes he hunted and fished for our food. Or we ate baked beans and bread or boiled beef heart. For one two-week stretch, we lived in a tent.
When my mother got Alzheimer's, it was a gift, in a way. She forgot that life had taken away her dreams, and the distance she kept from us shortened. She let me hold her while I sang "Too-ra-loo-ra-loo-ral," the Irish lullaby she used to sing to my sisters and me when we were little. Once, when Shania Twain's "Man! I Feel like a Woman!" came on the radio, I started singing that to her, and she laughed. Another time, while my daughter and I were with her, she suddenly looked up and said, "We used to have so much fun when we all sat around talking and knew what we were talking about."
By then, age had turned her raven hair a beautiful white, and she still had great-looking legs. Alzheimer's took away her ability to remember many things but not how attractive she was. Whenever I saw her flirting, I had to smile and think, "Now, that's my mom!"
As the disease progressed, though, she would fade in and out of her happy moods. Not all the things she did were as funny as the time she became ferociously jealous of the female lead in a Clint Eastwood movie. Sometimes she would tell me she just wanted to die. Why couldn't she just die?
After a while, the sun couldn't bring out the gem-glitter in her eyes anymore. The disease replaced it with a helplessness, a questioning look that I never could answer. She forgot how to dress herself and would walk into the living room naked.
Once she sat outside my sister's house for hours talking to all the people she imagined had come to visit her. When I asked her what she was doing, she said they needed her, and she couldn't go inside until she helped every one of them.
Toward the end of my mother's life, I was trying to decide whether to visit her in the Alzheimer's home near where my sister lived in Maryland. Frances Eileen wasn't supposed to know who we were by then, and I wrestled with the concept of remembering who she was rather than who she had become. I was struggling with this decision until a friend told me that presence is more important than memory. I thought he was right, so I went.
The illness had drained her pride and confidence. Her movements, no longer graceful, amounted to little more than the small steps she made to advance her wheelchair down the hallway. For the first time I could remember, the knobs of her knuckles, racked with arthritis from working around supermarket freezers, weren't working at something. And I noticed she seemed to get cold.
The nursing home had an extra room for family, and I stayed there. It saved money, and it was nice to be able to spend the whole day with her. But it was painful watching other people try to get her to remember them, so I decided to enter into her world rather than force her into mine.
I studied theater, so it was easier for me than it would be for most, I guess. Talking to her was like talking to someone who doesn't understand English. Words failed, but we did have moments of connection. One time I saw her rub one of her hands over the other, as if she were taking pleasure in the softness of her own skin. I slipped one of my hands between them, and she stopped rubbing. She let me keep my hand there, comforting her.
The last time I saw my mother, I took advantage of her being strapped in her wheelchair to share some of my life's troubles with her, which I never could have done if she hadn't had this illness. While she couldn't verbally make sense any longer, tears trembled in her eyes. I don't think she understood what I was saying — it was too late for that. But the tears showed me she cared.
Before I left, I kissed her face 100 times. (I know it was 100 times because I counted.) Then I said, as I always did whenever I left her: "I love you. God bless you. Goodbye." In the past, when I said that, she would hang her head, strike her chest and cry. That time she did nothing. There was no response. None at all.
A few months later, she died of a heart valve problem. She just went to sleep and never woke up. I know she wouldn't have wanted us to spend money on her burial outfit, but I remembered how sharp she used to dress before sacrificing for us all those years. So, I bought her a stunning formal dress with crystal beads and matching sequined lingerie. I don't know if she would have liked the color, blue, but it complemented her eyes.
The last thing I said to her at the cemetery was: "I love you. God bless you. Goodbye." Then I left her to her rest, next to my father, where I knew she wanted to be.
If I could have spared her the darkness of Alzheimer's I would have, but not the light. In a way, this tragic disease seemed to bring some openness to my mother, some enjoyment of life I don't think she would have experienced otherwise. What a horrible thing to suggest that this disease that warps the mind could result in something good. Now when I think of her, it helps me to know that we connected on some emotional level that we never may have reached otherwise. I hold up her life as a great example — of how to love deeply, of how to give oneself to one's family, of how to release anger, fear and pride.
Now I remind my children and grandchildren all the time that I love them. And I have made sure they all know my favorite color is Van Gogh blue.
12:00 AM EST
July 27, 2005