Coast to Coast: Readers Share Insights on Driving and Vision Loss
One of the most devastating consequences for people who become visually impaired is not being able to drive. Driving is a critical part of everyday life - enabling you to carry out daily tasks, keep an active social life and have control over how you get where you need to go. Even more, driving is a source of freedom, independence and self-worth. Over the years, many of you have shared feelings of frustration, despair and sadness about the difficult adjustment that follows giving up driving.
In our last issue of Sharing Solutions, we told you about a grant that Lighthouse International's Arlene R. Gordon Research Institute received from the National Institute on Aging for a five-year study to better understand driving transitions among people with vision loss. This study is looking at current drivers who are visually impaired, with the goal of identifying what influences them to change their driving behavior or to stop driving; the psychological impact of these decisions; and the factors that make it more or less difficult to make the transition from driver to ex-driver.
While the progress of this initiative will be shared in future issues of this newsletter, we asked drivers and ex-drivers to share their insights and experiences. What would lead current drivers to "give up the keys" and what emotional and practical consequences do they anticipate? We also were interested in the most important influences on people's decisions to stop driving, the psychological impact, and what has helped or hindered their adjustment. We received heartfelt responses from readers across the country. Here's what you had to say.
Factors That Lead to "Giving Up the Keys"
People who are still driving described changing where and when they drive in light of their vision problems. One individual stated, "I limit driving to non-rush hour times and I do not go very far." Others no longer take passengers, don't drive at night or in bad weather, or drive on less trafficked roads, avoiding major highways.
What would make these drivers with vision loss stop driving? People shared the following comments:
- "Advice from my ophthalmologist or close relatives and friends."
- "When my vision deteriorates or I don't pass the vision test for license renewal."
- "When I have a close call or car accident."
They are apprehensive about the future, anticipating a difficult emotional adjustment, limited transportation alternatives and loss of independence should driving no longer be an option.
Primary Influences on the Decision
The decision to stop driving did not come easily for anyone. While numbers of people reported that they stopped on the advice of their eye doctor or family members, many came to the decision themselves. The most common reason was that they no longer felt safe and were concerned about the safety of others. One individual shared, "I never would forgive myself if I hurt someone else."
Many people stopped driving because they noticed changes in their ability to see traffic signals, road signs and lane dividers. Others described difficulty with discerning signal colors or making out the hand signals of a policeman directing traffic. Some people had trouble keeping up with the speed of traffic or noticed that cars appeared suddenly in front of them as if coming from nowhere. One individual's jolt occurred when pedestrians on the side of the road suddenly became visible only as his car was nearly abreast of them; and, for another, sailing through an unseen traffic light scared her so badly that she never drove again. One man shared with a heavy sigh, "The probability of having an accident is high and the only way I can eliminate that risk is not to drive anymore."
For many people, it took a near miss or even an accident to decide. One man gave up the keys after narrowly missing a bicyclist. And one woman shared a harrowing tale of driving in the wrong lane when two oncoming cars swerved to avoid her. She never drove again. Having a car accident was often a "wake-up" call - from fender-benders to actually hitting a bicyclist, who thankfully wasn't hurt.
The Emotional and Practical Consequences of No Longer Driving Most everyone described the painful loss of independence.
- "I was devastated. I felt like part of my life had come to an end."
- "It's terribly hard to give up the independence I've enjoyed nearly all my life."
- "It's the control over my own life that I lost."
And it's this lost freedom that often triggers feelings of anger, helplessness, fear and depression. One individual commented, "I felt as if I slipped into a dark hole and went into a state of depression." Sometimes, the sense of despair grew out of concerns about being a burden to their family.
No longer driving often means having to ask others to get where you want to go. Many people described how difficult it is to ask for and accept help, whether it's from a spouse, family member or friend. One woman shared, "I didn't like having to ask my husband." It's not surprising that a number of people commented on how grateful they are to friends and relatives who offer rides without being asked.
People struggle with not being able to spontaneously go out when and where they want. Careful advance planning becomes necessary for shopping, appointments and social events. One woman said, "Being dependent on someone else to go anywhere, having to schedule appointments at others' convenience and not going anywhere alone all make a normal life difficult."
Learning to be patient is easier said than done. One woman commented, "Since I stopped driving, I had to learn patience in dealing with the public transportation system." And for a man who relied on his wife, "Not always needing to be taken 'right now' has helped both of our dispositions."
Making Adjustments
Deciding to stop driving on one's own rather than having it imposed seemed to make a difference for many people. One person said, "Giving up driving was the hardest thing I ever did, but I did it on my own." One man shared, "It's easier to accept not driving since it was my decision rather than someone else taking the privilege away." Another woman reflected a similar sentiment, "It was best that I made up my own mind. My husband told me later that while he had concerns, he also had faith that I would stop when it was time." One individual sums it up well: "It's important to make the decision ourselves . . . not have the children take the keys away from us . . . to keep the control ourselves over the decision."
Many people talked about the help received from spouses, relatives and friends. Several people kept their cars and hired drivers or asked family members to take the wheel. Others admitted that the adjustment affects more than just them. One man shared, "My wife has been supportive and understanding of this big change in our lives."
Some people described how it helps when others openly acknowledge and genuinely empathize with how difficult it is to adjust to not driving. Others spoke about their support group and the benefits of sharing the loss and disappointment with people who are in the same situation.
Living with a spouse or partner seemed to make the adjustment a little easier for some. This is not surprising considering many people's reluctance to reach out and ask for help. Yet, one woman commented, "People are kind . . . they take you where you need to go. People will help. We have to learn to ask."
Many people felt that the availability of community-based transportation alternatives helped with their adjustment, and limited or inadequate resources made things difficult. While resources differed widely, options included transportation programs through local area agencies on aging, public bus services, low-cost senior taxis and various types of paratransit programs for people with disabilities. In fact, a couple of people reported that had they known about the transportation resources in their area, they might have stopped driving sooner. One woman moved to a community with a countywide door-to-door transit system. "It works great! A wonderful feeling to go alone, to go when I want to or need to, and it's only a phone call away."
To Drive or Not to Drive . . .
"Giving up driving was one of the hardest decisions I've had to face," is a comment that reflects the sentiments of many people. The decision, often made over time, usually comes after making adjustments on where and when to drive. While driving is one of the things that people miss most, they do adjust. One person shared, "I thought I could not live without driving but in time I adapted." People credit their adjustment to the thoughtfulness of others, the support of family and friends, and the availability of public transportation and paratransit programs. One woman shared, "The transportation service in my area helped enormously because it gave me independence." And regaining that lost freedom can make all the difference.
Thanks for sharing...
Deanna Austin, Program for Visually Impaired Adults Support Group, IN; Gertie Bias, Affiliated Blind of Louisiana Training Center Support Groups, LA; Donald Blodgett, NH; Beverly Bookbinder, NJ; Betty Cain, Low Vision Support Group Max II, SC; Juleen Farnstrom, South Central Nebraska VIPS, NE; Chester Grabowski, IL; Janet Hargreaves, Sebastopol/Santa Rosa Macular Degeneration Support Group, CA; Judy, Eye Am Coping Support Group, MI; John McElheron, Lakeshore Seekers Support Group and Lake County Michigan Support Group, MI; Anne Moran, Eye Openers Brick/Point Pleasant Support Group, NJ; Connie Payne, Low Vision Support Group, MI; Shena Robinson, ME; Mary Rumman, Turner Geriatric Clinic Low Vision Support Group, MI; Linda Scribner, League for the Blind and Disabled Support Groups in Fort Wayne, Auburn, Decatur and LaGrange, IN; Marion Slacke, Focus on Eyes Support Group, NJ; Wilma Vencill, NE; Delores Wussler, Insight Support Group, FL
To get in touch with people who shared their experiences, call Carol Sussman-Skalka at (800) 829-0500 or e-mail her at sharingsolutions@lighthouse.org.
This article appeared in Sharing Solutions - Spring 2005 Edition