Sunday, April 25, 2010

Driving with Alzheimer's Disease

There are a some pivotal moments in the Alzheimer's journey. Moments that are never forgotten by family and caregivers. They often have to do with loss of autonomy. They are symbolic and somewhat embedded as trail markers in the long journey. Kind of like climbing a mountain, when you get to the end of the tree line, or the first glacier, or the bivouac. The Alzheimer's journey is an uphill climb, except at the end of the climb you are not necessarily rewarded with the beautiful view at the summit. Oh well enough metaphor.
One embedded moment is the diagnosis, another is the loss of one's home, entering an assisted living, or nursing home. Another is driving or the loss of the ability to drive. It is a profoundly emotional moment.
One of the most poignant things about it, is that the disease robs the person of the ability to drive, but being the ugly little entity the disease is, an actual person, has to take it away from the victim. The doctor, or a family member, or some state employee, or worse yet contracted county employee working for the state at the department of motor vehicles. We all know how empathic our civil servant public employees can or can not be.
As a family member I have personally lived through the driving issues. As a physician I have lived through it many times more with patients and families.
It is never pleasant from any end. I talk about it a lot in the memoir. In my own personal situation, my mother was loosing her ability to operate a car. A big part of the problem for her and for most, was not the actual operation of the vehicle, but actually finding one's way, around in familiar, places. Next was the depth perception and visual-spatial issues.

Ironically, my mother was still a licensed driver, but loosing her capacity to drive. I was just seventeen, and had gotten my learner's permit. I had more capacity to operate a motor vehicle than she did, but I could not drive the car without a licensed driver in the front seat, which was my mother. I hastily moved towards getting my regular driver's license as soon as the laws permitted.

With the loss of autonomy for the driver, comes more responsibility an sometimes burden for someone else. That is a tough thing. We don't ever like to use the term burden. For some it is not, other's deny and still others thrive on taking over the transportation responsibilities. (Not to many really, but we don't admit it because then we struggle with the concept of selfishness)

Without a doubt since the end of the industrial revolution, and going back to the days of Calvin Coolidge, the writing of Sinclair Lewis operating a motor vehicle is the ultimate symbol of autonomy and power. We even make cars to be a status symbol and a signature of who we are. Remember when you were a teenager and got your license? Did your life change?

So what happens? Often the victim has a sense that they are not a good at driving and what it entails. They may be anxious or not want to drive in unfamiliar places, but they can't quite articulate it, so it is up to others to figure this out. That leads to one of the most common phenomenons I see as a doctor. Driving the familiar routes. Only to the store, the gas station, the beauty parlor, to church. Just a few blocks or miles, sometimes a route driven for forty or fifty years. The route may not have changed but the disease changed the person.
So I commonly have gotten over the years this: "Mom or Dad, only drives to the store, or to church. There is no one to take them to the store or to church. They are comfortable with that. That's OK right doctor?"
Well sadly it seems okay, but the honest to God truth is, it is probably not okay. Remember Alzheimer's is a variable disease, on a day to day basis, with a downward decline over months and years. There are GOOD days and BAD days. Some days the driving will be spot on, and others maybe not so much. You never know.
The doctor once again gets to be the non-caring and non-understanding bad guy. The bearer of bad news. The messenger gets shot. The doctor does not get it. They only drive to church and the store. The doctor is a jerk, Let's go to somebody else that says its okay to drive.
The truth of the matter is, you can find another doctor who may look the other way, these may also be the docs that are rather apathetic in trying to treat the disease. -since there is nothing you can do about it ultimately- bad attitude.
Remember most accidents happen within a mile or two of home. a motor vehicle is a potential deadly weapon, sorry it just is.
Notwithstanding the fact that there are a lot of really crappy drivers on the road. Driving is w weird thing, most people believe themselves to be an above average driver. Not to mention the fact that you have little rude hormone boys under thirty thriving on the pseudo power of the vehicle, and with each generation, now angry little rude girls also driving with that false sense of power. No respect for others or the deadly weapon they are operating. Not to mention the fact of all the 45 year old victimized by life adolescents, who are operating the weapon under the influence of mi sued alcohol or whatever illicit drug, they use to make there life seem better, Then we have the popular misuse of benzo's and the ever popular ambien, and opiates. Of course we can blame the doctor there. Prescription drugs are a problem, and society continues to minimize how we throw these around, so when the doctor takes it more serious than society, people don't like it, so they go to another doctor.
So throw in the Alzheimer's victim, it robs your judgement and reaction time, throw in everybody else on the road, and it is a bad set-up. The poor AD victim may not be able to react to all the carelessness on the road by others, let alone themselves. And Yes there are bad drivers within a mile of your home.
As a Doctor it is less tense when the AD has stopped driving on their own, or at a family member's urging. That is not often the case, so the doc has to start the process. This is not to mention the fact that the doc is also responsible for whatever happens on the road. Hence lots of lawyers. So it is a legal thing and an ethical thing and always painful for everyone taking away the privilege to drive.
So the doc sends a letter to the DMV, depending on what state you live in.
Here is the best part, the public employee at the DMV can sort of do whatever they want, not so much accountability for behavior day to day, as you may or may not know in the public sector, The DMV employee may be nice or mean. It is about them and if they have a bad day or family life or whatever. Hence they may give the AD victim one or a few chance to pass the test. They may start over. Yes it is all computerized, but believe me there is leeway depending on where you live. In addition if you live in a small town your loved one may even know the employees at the DMV. What do you think will happen- there is some variability depending on how the employee feels about your loved one over the years. Throw in the factor that your loved one may be having a good or bad day, when they visit the DMV. You have a total crap shoot. They may or may not pass. If they don't pass, the chips fall and lots of consequences, and change. If they do pass, everyone sort of denies the illness a little bit and life goes on, and God forbid nothing happens on the road.
This is why nobody knows what to do in the end about the driving issue. The neurologists tried to develop some guidelines recently but i9t is still a major quandary. In the end family members are still in limbo and filled with anguish over this. Doctors get to be once more vilified over it. It is heart-breaking and scary. It is a sad moment and part of the ugly process of the disease stealing from the person and their dignity. It can be pure anguish for the family. It is a universal moment filled with a myriad of emotions. You are not alone.

1 comment:

karen said...

Mom never drove. That is a blessing now. But when I was young sure wish she would of drove me around. I am so sorry for the drivers who have to stop. But it is so scary for all.

Talking about the book with the Lake Superior wind....... a calm day