The messy, personal side of health care

By Stephanie Tames

The ambulance driver knows my sister’s name. He’s come to her apartment a dozen times, summoned there by a 911 call placed by my sister or her emergency response company. The call button hangs around her neck like the creamy strand of pearls she used to wear to work.

Not long ago she accused the driver of stealing her prescription pain medicine from her purse when he took her to the hospital. She said she didn’t notice it was gone until after she returned home. She called the police. They’ve been to her apartment before, too.

Four years ago my sister had a stroke that left her speech altered and the left side of her body damaged. Now, her left arm is thinner than her right, the muscles useless and withered, and the hand on that side curls in on itself like a backwards question mark. She tucks her arm close to her body and keeps her twisted hand hidden under the sleeve of the sweater she always wears. She’s cautious with her arm as if it’s cradling something fragile, like a baby bird.

The muscles in her left leg are weak and even when her brain is able to send it the right signals to bend, lift and step, it no longer has the ability to hold her upright. She uses a tripod cane to walk, relying on the strength of her right side to keep her body steady. Even then she battles the laws of gravity.

There were problems earlier, surgery for a brain aneurism that didn’t go well. And before that, throughout her teen and early adult years, well, let’s just say she liked to party. Still, she held good jobs, was married, has a son.

But then things started to go wrong. Divorce. Bad decisions. She fell back into old habits. Now she lives alone, relying on disability and food stamps. A home health aide gets her bathed and dressed and fixes her meals. She’s broke.

My sister has a primary care doctor but often she goes to the emergency room instead. It’s easier. She doesn’t have to make an appointment or call for the medical van. She goes for things like a sinus infection, migraines, a pain in her back. Bronchitis. Sometimes she really needs the emergency room. Her heart is weak. She has breakthrough seizures.

But more and more she goes because they’ll give her what she wants. She wants the medicines that make her numb. She wants the medicines that make her happy. She gets these from her doctor, too, but it’s never enough.

It would be easy to say that my sister is part of the problem with health care, why costs are rising out of proportion to the care that’s given. She overuses, and misuses, the system. Each of her unnecessary trips to the emergency room costs thousands of dollars. Medicaid is picking up the bill, which means we’re picking it up through our taxes. These are the facts.

But she’s not alone in creating this problem. I’m part of it, too. I don’t take care of my sister.

She needs rides to the doctor. That might help her stop using the emergency room as her personal physician. She needs someone to keep track of her medicines. She needs companionship. She needs money. She needs help managing her pain, and her use of pain-numbing, mind-numbing drugs.

Needs. That’s the way it is with my sister and why I can’t help her. She needs so much, takes so much. It’s been that way for a long time. I don’t know what happened. And I don’t know why I feel the way I do. Maybe the strokes and her other health problems altered her in some essential way. Maybe I’m the one who changed. All I know is that I love my sister, but I can’t help her.

My sister reminds me that the Bible says family should take care of one another. I know she’s right. But when I help I feel like I’ve stepped into quicksand, her needs become its sucking hold pulling me deeper each time I try to move away. I’ve learned I can only give a little at a time, and to let the rest go.

My sister is part of the problem health care costs have soared. I am, too. But don’t judge us too harshly. We didn’t plan it this way. One minute we’re two girls riding our bikes together. The next, four decades have passed and I’m pushing my sister in a wheelchair while she stares off into some memory, her face pulled into a crooked smile.

What my sister and I didn’t know all those years ago was how messy life can be. And unpredictable. I think she’d say that if those were life’s lessons, she aced them. I wouldn’t disagree.

I visit my sister a couple of times a year. We talk on the phone often. I send her a little money when I can, try to help her avert one crisis or another. Should. Need. Responsibility. Care. Enough. I see these words everywhere, often like an aura hovering over my life.

On the phone my sister asks me if I remembered when we used to go dancing together at clubs. She loved to dance and had a natural rhythm that I envied. We didn’t need partners. She would grab my hand and pull me onto the dance floor and I’d follow her with complete abandon. She’d throw her arms up in the air, her head falling back, and she’d shimmy and sway while I pretended that I looked just like her. On the other end of the phone, I knew she was smiling her lopsided smile and I was smiling, too. Of course I remember, I tell her. But we were different then.

Stephanie Tames, a writer, lives in Statesboro.