It’s great when caregivers have time to plan in advance for a challenging event. Although our plans don’t always work perfectly, thinking ahead helps us handle difficult times more calmly and effectively.
But Alzheimer’s has a way of blowing away our expectations. We plan for one set of obstacles and find we’re faced with others we never anticipated. What then? We simply do our best—that is, the best we can do at that moment .
New caregivers, take heart. Time and experience bring new skills. The more difficult situations we work ourselves through, the more we realize we can rely on our instincts and judgment. We find we can work for our loved ones with confidence, strength, and trust in a Wisdom far greater than our own.
This trip with Mom to the doctor is a carefully orchestrated event.
First I made a plan, which, to my surprise, Dad readily agreed to. A few days before the appointment, we’d let the doctor know our concerns, not by telephone, but in writing. I’d deliver the information to the nurse in person and ask her to have the doctor review it prior to Mom’s appointment.
We carried out the plan to the letter. A week ago, Dad gave me a sheet of yellow legal-size paper on which he had hand-printed a list of the issues that most trouble him: Mom’s confusion; her repeated questions; her frequent refusals to eat, bathe, take her medications. He also included her anger, saying that, although it’s usually directed toward him, it’s now occurring both at home and in public. He ended by expressing his opinion that Mom’s sadness and anger are indications she is depressed.
To Dad’s sheet I added a printout of a computer file I started soon after the Colorado trip. The file, titled simply “Mom,” contains descriptions of her bizarre behavior on that trip and documents how that behavior has intensified in the weeks since. Like Dad, I mentioned Mom’s hostility. I described how she slams her fist into the furniture at home and told of her more recent tendency to get angry with people she doesn’t even know. I included a description of how she aims her shopping cart at other shoppers in the grocery store, noting she hasn’t hurt anyone, but only because I’ve intervened. I mentioned her incontinence, saying I don’t know whether she’s no longer able to tell when she needs to go to the bathroom or simply chooses not to go.
Four days ago, I met with the nurse at the geriatric clinic. I gave her the envelope containing our notes and requested she have Mom’s doctor review the information before her appointment. The nurse assured me she would place the notes in Mom’s file.
Now, as I sit with Mom in the waiting room, Mission accomplished, I think. The facts are on the examining table, so to speak, so I’m sure we’ll get help.
Finally Mom’s name is called. On our way down the hall, we stop for her to be weighed. She’s all smiles as she steps onto the scales and then chats about the weather with the nurse who takes her pulse, temperature, and blood pressure.
When the doctor enters, Mom greets him with another wide smile, which he returns. Is that surprise I see in his eyes? “No need to get up on the table,” he says. “We can do this right here in your chair.”
With scarcely a glance to Dad and me, he listens to Mom’s heart and lungs. In the next couple of minutes he educates her on the value of exercise and she politely agrees to stop smoking. He mentions nothing about the notes I delivered, but I see the corner of a piece of yellow paper sticking out of the file beside him on a desk. I wait.
Finally he opens the file. After flipping through the pages stacked inside, he at last takes action on the information Dad and I provided…with a five-word question to Mom. “Mrs. Bailey, are you depressed?”
Mom looks at Dad, not the doctor. “Depressed? Oh, no. I’m fine. We’re fine, aren’t we, Daddy?”
Patting Mom’s shoulder, the doctor answers, “Good! See you in four months.”
Is that all? I want to scream. Is that all? Will you just watch for ten minutes, see Mom’s smile, hear her words, and dismiss the experience of the people who live with her all day every day? Is that all?
In the time it takes the doctor to gather his notes, turn to the door, grasp the knob, and turn it, my brain presents my choices.
Step up, speak out, make him listen. If Dad’s eyes blaze or he tries to interrupt, ignore him. If Mom gets upset, so much the better. The doctor can see it for himself. Isn’t that what you want?
No! Play it safe. Who knows what Mom might do if you make her angry? She might throw a chair, grab the needles, smash the equipment. Just leave. Try again next time.
Silent, I watch the doctor walk through the doorway. I hear the door close behind him. I’ve chosen escape. Escape from the situation without doing anything to hurt Dad. Leave before the wild woman who lives in my mother’s body can make herself seen.
Coward. I keep silent and we walk to the car.
Until today I have utterly underestimated the extent of my father’s denial. Mom’s confusion and questions, her anger and fear, the hitting and shouting and all her refusals of food and medication—all were apparently erased from Dad’s memory when she looked at him and said, “We’re fine, aren’t we, Daddy?”
His denial is maddening. And I’m incensed by the doctor’s casual “See you in four months.” But I save most of the anger for myself. My fear infuriates me.
Four months. Four months. Next time I’ll be ready. I won’t rely on paper in a file. I won’t be intimidated by a man in a white coat. Four months from now, I’ll make myself heard.
Lord, I feel I’ve failed. I had the opportunity to get real help for my parents, and I let them down. I’m too ready to depend on someone else to see the hard facts and say the hard words. Remind me, Lord, to depend on You. I can do nothing without You and everything with You. Remind me, Lord, please: we can do it together.
“You will not have to fight this battle. Take up your positions; stand firm and see the deliverance the Lord will give you…. Do not be afraid; do not be discouraged. Go out to face them tomorrow, and the Lord will be with you.” 2 Chronicles 20:17 (NIV)