Many people see dementia as a curse to be dreaded -- its victims to be pitied, even shunned. After all, how do you talk to an old friend who seems to babble or can't remember you?
"Give me a good swift heart attack or a massive stroke," a friend once told me. "Just protect me from Alzheimer's."
On the good days -- most days -- we caregivers know better. There are about 176,000 of us in Minnesota caring for someone with Alzheimer's disease or another form of dementia. Our families are different, but we recognize each other's stories.
Since September 2008, my mother-in-law, Ruby Fairbanks, has lived with us because her husband can no longer manage her care. Ruby is unaware that she is a burden -- and a blessing. Like most who care for those with dementia, we grieve Ruby's evaporating personality, but we also have found a deepening intimacy, even joy.
Oh, we tire of the endless repetitive questions and the grinding demand to be alert/caring/soothing/loving all day and some nights. At times we need to vent our anger over the physical, emotional and financial costs, to shout about things before we shout at someone.
But under her shroud of forgetfulness remain embers of Ruby's buoyant personality.
At 87, despite a shaky gait and sight in just one eye, Ruby retains her innate curiosity about people. Although some words are lost, her agile mind creates new and often playful word combinations.
"I'm waiting for the man upstairs to come down and tell me what to do," she announced recently. "But maybe he's scared of me. Most guys are."
These days Ruby sleeps 20 hours a day, like the cat she dotes on, her naps interrupted by grousing, joking and proclaiming joy over nearly everything in her shrinking world.
Untroubled by reality or social niceties, Ruby often talks over the TV actors who somehow enter our living room.
"I don't know who those people are," she told my wife, Sheryl, one evening, "but tell them I have the best daughters in the world. That's Kathy and ... what's your name?"
Past and present often collide, and the 1940 salutatorian from Minneapolis South High with a photographic memory knows that if she can just find the right house, she can see her mom and Aunt Minnie again.
At times Ruby is painfully aware of the slipping synapses and grows sad, even morose.
"Why am I still here?" she wondered one night. "I can't do anything anymore."
The Sayings of Ruby
Last year I began to jot down the Sayings of Ruby, sometimes poignant, often laced with unintended humor. When I read them to her for this article, she broke in with laughter. "Well, I'm a Svenska flicka [Swedish girl]," she said. "That explains everything."
Some of her sayings:
• "Those leaves up in the trees are so pretty. Did you put them up there? Oh, well, tell whoever did they get a gold star from Ruby."
• "If you weren't here as my caretaker, I'd stand next to you and talk you into it."
• "It's fun being around you and Sheryl -- Warren, keep up with me now. I'm old enough to be your sister, you know."
• "My life has had a lot of trials and temptations, and I guess you're the last one."
• "I need a Kleenex. My nose is knocking on the outside of my face."
• "I've always been kind of a fun girl. Hey, big boy, want to have a little fun? Get me some coffee. That's as much fun as you can stand."
• "Right now I've got goose bumps thinking about my family and how they keep me, what, happy and safe."
• "Heaven will just burst open when I leave this place. Everybody there will be free, I think -- kind of whoop-de-doo, like a good party."
• "What are you going to do when I croak? Whatever you do, don't cry. I'd really like to see my mom and Aunt Min, and I think I have a bunch of cousins, too. Are they all gone? How did I get to be so old?"
• "Sixty-one years? I've been married to that guy for 61 years? That's Roger, right? Are you sure he's still around? I didn't think he could keep up with me."
• "I've been around quite a while but I guess I'm not cooked yet. Somebody put a bomb or something under me when I was a little girl and it hasn't gone off yet."
• [Waking up] "What time is it? Life should be coming around the corner pretty soon."
• "It's so hard in my heart when I think about Mom and Aunt Min. They aren't around anymore, are they? Did you ever meet Grandpa P.J.? I think they're all dancing with the man upstairs -- or they would be except they don't believe in dancing."
• "I must be 100 by now, either that or dead. If I'm not dead, get me a cup of coffee -- and none of that funny stuff in it. Just black, the way it grows."
• "The cruel, cruel world they talk about, it's not so bad. The Lord has his hand under me, because I don't think I can swim anymore."
• "I don't know what's going on, but when I think back in life, I'd say I get an A-plus."
We know Ruby's creative vocabulary won't last. The dementia will continue to erode her personality and speech. But her struggle to celebrate and make sense of life reminds us that she is never to be defined by her disease.
"Being so old, it's awful," Ruby explained one night as I reached for my notebook. "But I don't want to give up just yet, so I might as well be happy. I guess that's my job now, help people feel whoop-de-doo."
Warren Wolfe • 612-673-7253
