Deanna Scott’s Caregiver Story

Deanna Scott

My Son is Dead!

A case manager was speaking at a traumatic brain injury conference emphasizing that caretakers must be very understanding when confronted with difficult behaviors from the recovering patient.

Startling the audience, a woman jumped up and shouted, “Why am I the one to be understanding? How about some understanding for me? My son is dead!”

The speaker said, “I am so sorry, I didn’t realize that your son had died.”

The woman threw hostile words back at the speaker. “You idiot!! I am grieving the death of the son I knew before the accident. My son didn’t really die. The boy I knew is dead!”

I was troubled with the woman’s words. I stood up and addressed her. “While I can understand your pain, perhaps what you are feeling is not the death of your son but another ‘death.’ As parents, we all indulge in dreams about our children. Most parents experience fantasies picturing their child as being famous. When your child has been head-injured, those dreams are ripped away. Perhaps your grieving is more about the death of your dreams rather than the death of your child.”

There was an awkward silence in the audience. Just when I thought I had overstepped my bounds, the room was filled with thunderous applause. Various audience members affirmed what I said by giving positive feedback . . . but in reflecting back about this incident, what I did was to transform sadness to optimism.

Thinking the person you once knew as dead is an unproductive feeling for caretakers. It justifies anger and begets fear. If you can recognize this is what you feel, you have to get out of it quickly. The person is not dead, but rather still in there. The “whole” may be in scattered pieces, but that is your job . . . to find the core of the person which is still alive and to be able to reconstruct the person. TBI patients often lose their rational and logical thinking but their antenna is highly attuned to pick up everything you feel. If the caretaker feels grief, it will likely be transferred to the patient. If the patient picks up on the “poor me” feeling, they might take it is their own . . . and “poor me” is dysfunctional for the patient’s recovery.

To be an effective caretaker, you must learn to know what you feel and why you feel it. Be clear to separate the death of your dreams with the mistaken feeling of the death of your child. If you replace sadness with optimism, you will find that the journey of the caretaker has magnificent surprises. There are rewards that are far beyond your fantasies about your child’s “public success.” As a devoted caretaker, you will be fortunate enough to witness true bravery beyond anything you have ever dreamed. You will experience a solo ride being the only one that witnesses this bravery. You will discover that true bravery is without public witness.

“Be of good cheer. Do not think of today’s
failures, but of the success that may come tomorrow. You have set
yourself a difficult task, but you will succeed if you persevere;
and you will find a joy in overcoming obstacles.”

— Helen Keller, 1880-1968