One of the difficult parts of being Harriet’s caregiver is that it is up to me to decide when something she loves to do is too dangerous for her to continue with. You can probably think of a few activities that you wouldn’t want someone who is mentally impaired to do. I’ve read of the struggle Caregivers have when their loved one wants to continue to; hunt, carry firearms, cook, drive, work in the wood shop, control the family’s finances, etc. It moves from a struggle to a tragedy when the person with dementia, catches the kitchen on fire, cuts off fingers in the table saw, gets angry and begins shooting at people, gives thousands of dollars to questionable charities, and has one fender bender after another. The friends and family of the person with dementia can see the horrible possibilities but the Loved one cannot believe that he or she should stop doing something that they have been quite good at for years.
Harriet and everyone else, agrees that there will come a time when she will have to stop driving. However, just because you know something is true doesn’t mean you’re going to be happy about it or agree about when it should happen. Very few people will surrender their drivers license and car keys without a fight. The last time we were at the Neurologist’s office he said, “I’ve read the report from the Neurological Psychiatrist, and he recommends that you stop driving. However, I feel that you should continue to drive until it becomes too dangerous for you to do so. I think that you should have your husband ride with you once a week to evaluate how you’re doing. When David thinks it’s time, then you should surrender your license and keys and let someone else drive you.” Have you ever felt like you’ve been set up? (A better idea would be, once a week Harriet would go to the doctor’s office, pick him up and drive him around town.)
Harriet has always been a good driver, probably better than I am. During the time we lived in Miami she drove cars for the Mercedes Bentz dealer. If a dealer in Jacksonville wanted a car that was in the Miami lot, Harriet would get a call. Or if the Miami dealership wanted a car that was in Tallahassee, she would go pick it up. Once she got to drive a Jaguar that was worth over ninety-six thousand dollars and this was in 1988. Being an above average driver is a part of Harriet’s identity.
In November of 2019 we will celebrate our 50th wedding anniversary. We’ve had plans, for a long time, to get a motor home and drive to San Francisco and up the Pacific coast to British Columbia. Dr. Herman* told Harriet not to wait. He said, “You don’t know what your condition will be by then so, any plans or dreams you have, should be done sooner rather than later.”In the spring we bought the motor home and started making plans to celebrate our 49th anniversary with our 50th anniversary plans. Our plans were to travel eight-thousand miles in a 28’ motor home and the question in my mind was, should Harriet drive the RV? She hadn’t had any difficulty driving our Ford Fusion but there is a big difference between driving a small car compared with driving a motor home.
During the summer we both got used to driving the Motor Home and Harriet never had a minute’s trouble. Therefore, this made me much more comfortable with the idea of both of us driving. We left Adrian on September 12th and drove to Denver to visit my sister Debbie and all the nieces and nephews living there. Once, during a time she was driving, Harriet said, “I wish Dr. Herman* had not put you in charge of when I lose my driver’s license. I feel like you’re sitting over there with a clip board just waiting for me to make a mistake.” “What are you talking about?”I asked. “I’m just sitting here reading a book.” “No, you’re sitting there holding a book and making remarks about other cars, what I should watch out for, and little corrections you think I need to make. You’re making me more nervous! So, why don’t you really read your book and be quiet about my driving?” Thank you, Dr. Herman!!
Even though Harriet has a wonderful driving record, the past is no indication of her abilities today. I read about a woman in Illinois who allowed her mom, who has Alzheimer’s, to drive her car. Sure enough, her mom hit another car causing it to tip over and wind up on its side. Fortunately, no one was hurt. However, the insurance company refused to cover the accident because of the dementia. Now both the woman and her mother are being sued, the woman for negligence because she knew her mother had Alzheimer’s and let her drive anyway, and the mother for causing the accident. As bad as this sounds, how much worse would it have been if someone had died in the accident?
The reason driving is so dangerous for dementia patients isn’t just because they forget how to drive. Most people drive without thinking about how to drive. After a while you just drive from force of habit. However, people with dementia begin to lose some important necessary, skills that put themselves and others at risk. Some people come to the place where traffic signs become meaningless. They see the stop sign but it doesn’t register that they should actually stop. For others, their thought processes, and reaction time, slow down so that, in a new confusing situation, they have no idea how to respond. For many, the dementia begins to affect their vision. They will lose peripheral vision and depth perception making driving very dangerous.
We left Denver and headed west on Interstate 70. What a beautiful drive through the mountains. It rained the first few hours but even that couldn’t hide the spectacular views. After driving about four hours we stopped for lunch in New Castle. After lunch Harriet wanted to drive. It wasn’t much further to our destination; we were going to camp in Rifle, Colorado. The sun was setting as Harriet began to drive, and she proceeded without any problems. We took the Rifle exit and turned right go to the rest area but the signs showing the way were difficult to see. Harriet realizing that we had gone too far down the highway became confused. Suddenly she said, ‘I don’t know what to do!” and slammed on the brakes bringing the RV to a complete stop. I could see a traffic light about a hundred yards ahead of us and said, ‘You can’t just stop in the middle of the highway! Pull up to that traffic light.” She pulled ahead about sixty yards and stopped, saying again, “I just don’t know what to do.” I said, “Look, the light just turned green. Turn left at the light and pull into the gas station, and we’ll figure it out.” She got the RV moving turned left at the light and pulled into the gas station. “I’m sorry,” she said, “I’m just so tired and feel kind of foggy headed” I resolved not to have her drive later in the day or anytime she felt tired and foggy headed.
Did you notice how I made that situation worse? I think she remained confused and stopped the second time because I didn’t look at her and speak slowly. I always speak too fast, and like most people even faster when I get excited or upset. When speaking to someone with dementia you should always look at them, if possible, say their name and speak slowly and distinctly. Otherwise, most of what you say will go right by them. When she stopped in the middle of CO 13 all that teaching went right out of my head. I was looking in the mirror to see if we were about to be hit from behind and was speaking way too fast and way too loudly. The second time she stopped, I looked at her and calmly said, “look, the light has changed, turn left and into the gas station,” which she did. (Strangely, Harriet has no memory of this episode.)
I was a bit surprised when, one day right after lunch, she had a similar episode. We had stopped for lunch in Elko, Nevada. After lunch she felt great and wanted to take a turn driving. She turned on the road leading to the expressway and started moving toward the first entrance ramp. She asked, “Do I turn here?” “No,” I answered, “this entrance is for the east bound traffic. You go under the bridge and turn left.” She stopped the RV and asked, “Are you sure?”This time I didn’t freak out. (The speed limit was 35 not 65, it was day time, and I knew that there were no cars behind us.) I answered “Yeah, we’re heading to California, which is west of here.” “OH. Okay.” And off we went.
Another time, Harriet had been driving for a couple of hours and we saw a sign for Wendy’s, so we decided to pull off for lunch. The restaurant was on the main drag on the left side of the road. She pulled into the turn lane but realized that there was a cement barrier and that she had turned too soon. Without checking the mirrors, she whipped back into the left lane. There was the screeching of tires and blowing of horns behind us as people behind us tried not to rear end the RV. Harriet was completely oblivious to what was going on. At first, I thought, “This is it. Time to take her driver’s license.” However, later as I reflected on what had happened it occurred to me that everyone has times when they mess up when driving. This didn’t mean that the dementia had made it, so she should never drive again. Rather, she was so focused on getting to Wendy’s that she wasn’t thinking of anything else. I don’t think that mistake was from dementia, I think it was just a mistake.
Finally, the night we got back into Adrian, we were driving on the Ohio Turnpike and Harriet smashed the passenger side mirror into a post at the Welcome to Ohio, Tollbooth, cracking the case and breaking the mirror. Earlier,when pulling up to the Goodbye Indiana toll booth, she pulled too far to the right, and the tires were rubbing and bouncing as we pulled away. Pulling up to the Welcome to Ohio tollbooth she again pulled too far to the right. You could tell right away because the tires were again rubbing the curb. The mirrors on a motor home stick way out and it connected very squarely with the post. I asked her, “Do you want me to drive the rest of the way?” “I’m okay. Those tollbooths are just so narrow, and I didn’t realize that I was so far to the right.”The rest of the way home was without incident, until she pulled into the driveway. Pulling into the driveway she swung so far to the right that the branches of the pine tree were on the windshield. In fact, she had to back up and straighten the rig out before pulling all the way in. Because I know that dementia can negatively affect a person’s vision, I think it might be time for her to stop driving. Three episodes, in one evening, all because she was pulling too far to the right, seem to indicate that her driving has become problematic.
I hesitate to tell her that she needs to stop driving because she has already lost so much from Frontotemporal Dementia. However, I also know that she would regret it for the rest of her life if she injured or killed someone while driving. Therefore, the difficult decision must be made, and it looks like I’m the one who must make it. Did I tell you how much I Hate this disease already? Sadly, the worst of it is in front of us. please pray for us.
*Not the Doctor’s actual name
A Caregiver's Journal 