Ch. 18: Not Driving – A Blow to Your Sense of Self.
Do you remember how proud you were when you passed your driver’s test, maybe at age 16, 17, 18? “Now I am an adult” is how I felt at the time. In America being able to drive is associated with freedom, autonomy, maturity, and taking charge of your destiny. Pat began driving at age 15 and drove continuously until last year. She drove well and virtually accident free all that time. But then came her Lewy Body diagnosis. And just like that Pat’s 57-year driving career braked to an abrupt halt. She has not taken this change gracefully. At various times she suggests that she would like to drive. When I tell her “no” (which makes me feel awful, by the way) she sometimes becomes angry, or sad, or argumentative. I believe Pat feels diminished. She probably feels like she’s being treated like a child. I think I understand. I think I’d feel the same way. But understanding the hurt doesn’t stop every episode from being painful for both of us.
The last time this happened we agreed to discuss the matter with her neurologist, Dr. Donn Dexter. Today he looked at the results of Pat’s neuropsychology testing a colleague had performed and pointed out that she had done quite poorly on exactly the tests that predicted driving performance. He was very respectful, never lecturing or pronouncing judgement. But it was clear from Dr. Dexter’s remarks that he much preferred Pat continue refraining from driving. Pat seemed to accept his remarks --- but I suspect we’ll return to this theme in the future, maybe several times.
Driving concerns are one of the most frequent topics I’ve heard at my caregiver’s support group. People talk about how their Lewy Body person “snuck out and drove around the parking lot” and “It got to the point we had to hide the keys” and “I worry he’ll kill himself or others because he insists that he can still drive fine” and “I dread talking with people who bring up driving places without realizing how that affects my wife.” Stories get told with a kind of war story humor that serves to mask the underlying worry and anxiety. Caregivers joke about a non-joking matter because what else can we do?
Pat and I have tried to lessen the damage as best we can. For instance, she used to love just driving around and getting “lost” to the extent of driving on unfamiliar roads with no destination in mind. It’s not my natural style but by now I’ve driven us around just about every country road within a twenty-mile radius of home; in the process I’ve learned that it really can be fun to drive around just to drive around, appreciating the world’s beauty and variety. I’m also fortunate to be mostly retired so I can promise Pat I’ll willingly drive her wherever she wants to go. But, of course, there’s always that one catch: “I’m driving and you’re my passenger.”
Pat’s comments on Not Driving – A Blow to Pat’s Spirit.
My comments on not driving would begin more angrily. Having driven since age 15 without any problems I feel that the assumption that I won’t drive responsibly is incorrect and I resent people making that judgement about me. I would often like to drive to a quiet place and look at the plants and do any small things I can do to help heal a plant, for example, but other people don’t seem to understand these things and think them silly. Another problem is that the people I’m with when we are driving places don’t understand those things and therefore not driving by myself leaves me in a place where almost everywhere I go I feel judgement.
When I was in the West I was marvelous at finding bone stashes everywhere. Two were up in the hollows of trees. They are a sacred mark of those animals’ existence and I appreciate seeing them and then letting them be. But I can’t drive to those places anymore so I feel stuck in a way – I feel there is a part of me I can’t go out and find and explore. It doesn’t seem reasonable that in all this world because I cannot drive I cannot explore some sacred places. This is really a painful thing. However, it is my circumstance and I’ve not gone beyond what I’ve been asked/told to do.
There are many things I can do with Ron or with others. For example, especially with small children present. Smaller children are great at exploring the meaning in the little pieces of nature we find. I don’t think I have anything more to say about this right now.
Added Note: January 2020. Pat. I can still imagine those sacred spaces in my mind. Just because I haven’t seen them doesn’t mean I haven’t seen them.