For those who care for someone with Parkinson's disease

Parkinson's disease Caregiver Commentary

Driving Dilema
By Lucille Carlton

Editor's Note: This is an encore commentary. We first published Lucille's article in 2001.

My husband was a quiet man, soft spoken and calm. When I heard his voice rising in volume and intensity, I paused in the doorway to hear what was upsetting him. He was speaking to his brother on the telephone, and he sounded exasperated.

"Harold," he said, "don't be a fool! It's time for you to give up driving before you maim or kill innocent people. You could end up that way too. Another near-miss today is bad enough, but you may not be as lucky tomorrow or any other day." There was silence while Bob listened to his brother's excuses. I watched my husband struggle for control of his emotions. Bob echoed Harold's explanation. "How can you say that your Parkinson's has no effect on it? It's stupid and dangerous to compensate by driving with BOTH FEET on the brake!"

I could hardly believe what I had just heard. I had been nervously biding my time for several months, waiting for the perfect moment to talk to my husband about his diminishing driving skills. Harold's disturbing telephone call actually presented me with a wonderful opportunity to broach the touchy subject. Was my husband really unaware of his own driving problems? Our new car was Bob's "baby". Whenever we drove anywhere it was understood that he was the one behind the wheel, not I. That was acceptable for years, but when his Parkinsonian symptoms increased I became a tremendously nervous passenger. Bob had always been a tailgater, but now we could never depend upon his slowed reaction time. He never kept an adequate distance between our car and the car ahead of us, so each time he slammed on the brakes I found myself shouting warnings. . .STOP!>>>WATCH OUT!

"Lu," Bob commanded, "stop it! You're unnerving me. I need to concentrate! Your screams are uncalled for. Can't you close your eyes and relax?"

The success of my plan to ask my husband to give up driving hinged upon a calm and concerned approach. I knew that I had to watch my words and not be accusatory. I begged Bob to consider giving up driving and I offered to be the family chauffeur. I acknowledged the fact that he viewed the car as his "FREEDOM WHEELS'. He felt that I was asking him to give up his most valued possession – his independence.

"Lu, look what you are asking me to do. I had to take early retirement because of my PD and that meant giving up my profession. . .my life's work. It made me feel worthless! Now I have to fight for control of my body each hour of the day. I can no longer do most of the things I used to do quite easily. I'll be lost without my "wheels". I seem to be losing total control of my life! What's left for me? Don't ask me to do this. . .please."

I could understand my husband's desire to hold on to this last modicum of control; however, I had to stand firm. Too many lives were at stake. When we were both calmer I patiently explained my reasons for such drastic action. We spoke about Bob's slowed reactions which could have been influenced by:

My husband sighed, then grudgingly agreed that my points were valid. He admitted that night driving had become a problem too. Familiar landmarks no longer looked the same after dark and street signs were becoming too difficult to read. We were silent for a while. My husband slowly removed his keys from his pocket, fingered them longingly, then carefully placed them upon the table. I breathed a sigh of relief. Sometimes the decisions caregivers dread are less of a problem when they are shared by both partners. Our world did not fall apart with this decision. I became the driver; my husband was still in control because he was my navigator.

Caregivers, if you and your loved one need an objective opinion about whether it would be wise for the patient to give up driving, you have several options available:

  1. Ask the neurologist for an assessment of the situation.
  2. The patient can be evaluated by a certified driving instructor. This will take approximately two hours. The check list is long and thorough, and include information about all medication the patient is taking, reaction time, vision and hearing problems, a check on the accuracy of steering and braking, directional errors, etc.
  3. Many states have provisions for doctors, family members or friends to report persons who may be dangerous drivers. Consult with an appropriate local or state agency, or with an attorney, to learn what can be done. This may be a desperate measure, but if it saves lives it's worth it.

Until the car keys are surrendered, please advise your partner to avoid rush hour traffic, driving in bad weather or after dusk, and driving while emotionally upset. If, as a caregiver, you are unsure of physical limitations at the time of departure, reach for the keys and take the wheel yourself. Think about using a taxi or public transportation more often.

It takes courage and wisdom for the caregiver and patient to handle this matter. A period of adjustment will require patience and understanding. It will not be easy for either party. Caregivers develop "broader shoulders" to better handle each increased responsibility. It's really a "gift" for your loved one.

About the Author
Lucille is the widow of a Parkinsons patient – the late Dr. Robert Carlton. Together, they authored the book "Courage Behind the Mask: Coping with Parkinson's Disease." Lucille is also the author of the book, "In Sickness and in Health: Sex, Love and Chronic Illness," published by Delacorte Publishing, New York. She also wrote an advice column for the NPF Parkinson Report entitled "Straight From The Heart," a quarterly publication and authored the brochure, Practical Pointers for Parkinsonians, provides valuable daily living guidance for Parkinsonians and their families.

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