The long good-bye

Dealing with my mother's dementia/ Alzheimer's is like being at the bottom of a well on a dark night. I look up and only see an oval of velvety sky. But instead of stars I see swirling faces. Angry ungrateful faces. Pointing fingers at me telling me how bad of a son I am. Telling me that I am selfish for not wanting to take this monumental task of giving care to a terminally ill person, especially my mother, with nothing but exhausting pain and deterioration to come. These imaginary faces mix with the real ones of people I know, giving me advice on how to handle "the situation." They console me by telling me they know how I feel. But, really, they do not.

For many people, terminal illness is an abstract concept. It's frightening and inexplicable but ultimately detachable. They see the illness from a far, akin to watching a remote disaster on television. Your heart goes out to the victims of 9/11 and 7/7, or the survivors of the tsunami, an earthquake, a mudslide or Katrina. But, ultimately, you can turn off your TV. You can leave those visceral images of decaying bodies and bloodied children behind. They will become the fodder of our lunch time discussions at work or our missionary meetings at church. We'll email digital sympathy cards signed by the thousands. We'll text relief aid to a five-digit number after witnessing planes crash into buildings and giant waves wash over unsuspecting tourists on YouTube. But it's still not your pain. You can log-off and sign-out, call the kids to dinner or hit up your friends to come over and play cards. However, you will never know the hurt locker certain of us must go through everyday.

When I was a small child my older cousin, Wilma, was the victim of a stalker (long before stalking became such a widespread term). I remember the tragedy as if it were yesterday: The perpetrator was her ex-boyfriend whom she left due to his being abusive. She was smart, gorgeous and tall with a demure sexy nature--similar to Audrey Hepburn and Pam Grier rolled into one. At the time she was studying cosmetology and had ambitions of modeling or acting. She lived in Rock Hill, South Carolina and wanted to eventually go north to New York or D.C. She had a nice, new beau and a new job at a mall in Charlotte. This new boyfriend came to pick her up at the end of her shift in his fine 1976 Buick. Stalking nearby was the abusive ex. A barrage of shots suddenly rang out, shattering the windshield. The new boyfriend dived to protect my cousin but was hit in the leg in the process. Wilma was hit too; a single bullet cleaved her spine and, in an instant, my beautiful 19 year-old cousin became a quadriplegic for the rest of her life.

I remember going to South Carolina with my parents to visit my father's family. Sitting in the room was Wilma as her machines wheezed and bleeped and hissed. To my young eyes as a child, she seemed alien, bizarre, freakish. She was mostly jovial, however. I remember her mother shooing us out of the room so she could be changed. Wilma eventually was unhooked from the machines and was allowed to leave the house. Her older brother Everett would lift her up out of the car and place her lovingly in her wheelchair. My mother used to say that the strain of carrying her around would kill him and that Everett should be afforded a "normal" life. He shouldn't have to totally give up his life to help his sister. My father would say it could've been God's retribution because Wilma was vain, spoiled and had too-often argued with her parents. The images of my cousin would haunt me. They would remain on my mind like a funky treasure--something I wanted to hide, yet something I needed to share. Of course, like most youth, when dealing with the incomprehensible such as paralysis, those feelings were fleeting. They would last just until we passed that famous Red Dot Liquor Store on the way out of town. By the time we crossed the Catawba River Bridge my mind would return to Legos or my Rock-em-Sock-em Robots--completely oblivious to Wilma's and her care-taking brother's reality.

Life is a brutal thing. It can mete out great and wonderful fortune to some while cascading untold horrors to others. As I now begin that long good-bye with my mother I find that I am being consumed by the disease as well. Everyday more and more of my time is devoted to my mother's caretaking. No decision can be made without weighing the consequences that could either positively or negatively affect her well-being. My life too has been snatched from me just as surely as hers has. And in those dark and secret moments I feel anger and pity for myself because I have been caught in the melee of this disease. Each step, closer to pain and loss. Each decision made, more challenging than the next. But this time I cannot go away. I cannot turn off her dementia. I can't grab Legos with the sweet bliss of knowing "somebody else" is there taking care of her.

About a month ago my mother told me that she wanted her favorite bible verse inscribed on her headstone: "Be still, and know that I am God" -- Psalms 46:10.

Admittedly, I'm not usually a religiously minded person. But when she said this a peace came over me that was so sublime I cannot adequately describe it in words. So I just became still. For the first time in my life I actually listened. Listened for those little whispers that everybody hears (except for me, usually). At that moment I did absolutely nothing. And by doing nothing the waters became still and I was clear in my thinking. Maybe now I could see in those crystal waters what I could not before.

Wilma went on to actually become a model and win a beauty contest. She was crowned Miss South Carolina Wheelchair 1981. She even moved out on her own and had her own apartment. She finished college and even got another boyfriend, all without the use of any of her limbs. Everett married. His wife was even a home care attendant for Wilma once and they now have several grandchildren. This stillness brought into perspective that which is truly important in life: your family, your friends and each of the ones you love. Realizing this, the choice becomes more palatable--just as I'm sure it did with Everett who devoted so many years of his life lifting his sister in and out of that wheelchair. Maybe this illness, this brain-eating, soul-sucking illness is, in some odd way, a blessing; that this diagnosis doesn't have to define my mother or me. That we should make this long good-bye as wonderful and as rich as it can possibly be because, in reality, it's not about how you die---it's about how you live.