The Imperfect Caregiver

To a doctor schizophrenia is: “A long-term mental disorder of a type involving a breakdown in the relation between thought, emotion, and behavior, leading to faulty perception, inappropriate actions and feelings, withdrawal from reality and personal relationships into fantasy and delusion, and a sense of mental fragmentation.”

For his psychiatrist the treatment for Rodger entailed medication to control his symptoms and regular visits to assess his thoughts and behavior. He was treating the disease. Every three months Rodger would assure him he was taking his medication and he was not experiencing hallucinations or hearing voices.

“She worries too much. Don’t listen to her.”

At home I was dealing with the illness. Despite Rodger’s insistence that everything was fine, I knew it was not. He paced the upstairs hall day and night, muttering and gesturing. I found him on his hands and knees trying to catch something scooting across the floor. Something only he could see. I reported all that and more to his doctors on every visit.

They listened to him. They got tired of hearing from me.

I knew when he was hearing voices. It was evident in a certain tilt of his head as he listened to the silence around him and in the sudden bursts of laughter when he was alone in his room. They goaded him into seething resentment when I insisted he take his medicine resulting in accusations of mistreatment.

“The others are here.” I’d tell myself, bracing for a difficult day. For weeks I watched as his behavior deteriorated. I scheduled appointment after appointment.

“She worries too much. Don’t listen to her.”

The doctor treated the disease the only way he knew how. More medication. It didn’t work. We didn’t know he was hiding it in his cheek and spitting it out.

The others came again and again. Then they stayed. Relentless. Aggressive. Unyielding. He broke. His mind a cyclone of confusion and suspicion.

He arrived at the hospital in the back of police car.

“Why did you wait so long to bring him in?” the admitting doctor asked. “He is in desperate need of treatment,” he added before calling for an orderly to take Rodger to the psychiatric ward.

I’d been telling them that for weeks. I was the one who worried. I was the one they should have listened to. Where they saw only the disease I was living with the illness and he paid the price.
Doctor, please hear me. Listen to the caregivers and heed their concerns. Caregivers see what you do not see. Caregivers hear what you do not hear. Caregivers live with the illness and that is often far more difficult than treating the disease.

Caregivers, do you find it difficult to communicate with your loved one’s doctors?
Do they heed your loved ones when they minimize your concerns?

Have you found a way to communicate with medical personnel that works for you and your loved one? Please share your comments in the space below. I’d love to hear from you and maybe the doctors would too.

Click here for an excellent post on this subject on The Caregiver Space.