Driving Me Insane

Driving Me Insane

Okay, so driving is not really a caregiving topic. Or is it?

In addition to all of the physical and cognitive issues that Hugh dealt with after his TBI, he lost his license for over eighteen months. Actually, he earned his license back after 10 months, and then lost it again when he had his first seizure, which is not an uncommon occurrence after brain injury. Our daughters were fourteen years old and both had a full schedule of classes, dance lessons, after-school activities, and social events.

Driving a family of four every place each person needed and wanted to be felt like half the day spent on the road with the other half spent waiting for doctors, therapists, lab reports, and pharmacists ... for school bells to ring and dance classes to end. I became so accustomed to being prepared to wait in or out of the car that I always carried a canvas bag bulging with reading glasses, notepads, magazines, books, water, and chocolate! Never mind that there were places I wanted to go. I shuffled and reorganized my job and errands and simply stopped doing a lot of the things I once did.

The four of us had to go so many places — and I had to get us there — that fun destinations became a chore for me. I did not want to get in the car. I remember clenching my jaw as I marched to the car when appointments were tight. It makes me sad to think about the number of times my kids asked me if we could go somewhere fun — to a movie, an event, or party, and I said, “Maybe.” They knew that answer meant “No.”

Immediately following Hugh’s injury, there were plenty of offers from people to drive the girls to school or dance, or to help with other errands. But these offers naturally dropped off as the weeks and months went by.

Getting people to and from where they need to go is a huge part of caregiving and one that I seldom hear discussed. There are services, but they cost money. Doing it yourself costs time, precious time that could be spent working, cooking, or cleaning — time that could be spent with the kids or “taking care of yourself” as all caregivers are instructed to do.

And there’s the other side of the story: the driver holds the keys, and thus, the power to determine who gets to go and when. This is a power I never wanted and often despised. I was forced to make difficult choices to get someone someplace while deciding that something another family member wanted to do just didn’t work out. I was the bearer of bad news. “We can’t do that today. It’s not happening.”

What can be done to help the caregiver who’s literally in overdrive? There are the obvious fixes, like asking relatives or friends for help, but that is not a long-term solution. Carpooling can work if your driving destinations are set in stone and other people share them. But short of that, I think it’s mostly grin and bear it, and stuff your bag with chocolate.

If you have a creative solution to this problem, please share it below.

Comments

My husband is 3 years post-accident; he has a seizure disorder and cognitive issues and unable to drive. While we don't have young children to drive around, our adult son is a part-time care giver and since we have 1 car, we do have to be flexible and usually plan out who needs the car, when etc. The big issue for me is my husband wants to drive and it is difficult having to remind him that the doctor told him he could not due to the seizure. He is okay with that but the next minute tells me he wants to buy a new car! So I just say okay and let it go - that's life with TBI!
I think some of this is about 'seasons'; you know, to everything ... turn, turn, turn ... there is a season ... turn, turn, turn! A Caretaker of my TbiGuy and mother (of 3-7 kids at any given time, blended family - today all but one is grown and out on own), primary income provider, and MFT who has to practice what she advises :). There are seasons where we are the driver and the bearer of bad news. At the time and in the midst we can't wait to be done and have some of our own time. We want, at the time, to be able to be the "yes" mom/spouse. And yes, we need to stay sane and release steam. In looking back, the boundaries provided by saying 'no' - were good and needed. We learned to prioritize life. My husband didn't drive for 6 years after his injury. This was a time that all of the kids were "involved" in activities; some of the kids were just beginning to drive, juggling the cars, the schedules, the doctor appointments, grocery shopping seemed endless and crazed. This was truly a long, hard season. Yet, working as a team, prioritizing and accepting that there will come a day, a moment, when it will be more calm, really is what got us all thru. Today my husband has his license back, he drives short distances (up to 18 miles one way so far - quite the accomplishment considering 1 mile was exhausting and extremely taxing for him just a year ago). Today, so much has changed. The kids are grown, out on their own, my husband is far more independent and yet, I still drive the majority of the time. And I am getting a little more of my time back. And I find some of that time is spent, yep, longing for the old crazy days of juggling and being the family chauffeur/taxi/transportation & logistics engineer. So, even though the times are tough, and chocolate does help, know that this too will pass ...
I dont have a solution; indeed I shall take up the chocolate idea...or maybe I would if I wasnt trying hard to loose weight. As time goes on, maybe I should take the innitiative and ask relatives for help in making the innumerable appointments over the other side of town. I have a true "phobia" about driving so it has taken extra effort on my part to do all the driving...I still depend on the tbi to be the "navigator" which is funny sometimes...rather a case of the blind leading the blind. We have both had to learn to laugh! Rosemary, keep up the good work talking about "what IS"...even when solutions are not readily forthcoming it is still healing to think that others have the same problems tool
Thanks for all the comments! I love the one from the very helpful spouse, great tips you offered!
My husband has gained and lost driving 3 times now. We have finally figured out that driving causes seizures. I find it harder to readjust to being the only driver after an episode. Once I get in the swing of it, it's better emotionally to just stay as the driver going forward. It is terribly hard though.
Rosemary , how do you know what I am thinking and stressing about week after week? I am still the driver in our household 2 years after my husbands TBI and yes I also clench my teeth whenever I need to drive somewhere. You are right about having to just do it. We as caregivers love our injured family members dearly and we do all we can to help but it is hard on us at times. Thank you so much for sharing all of your experiences with all of us. Dawn
I have no solution, but know where you are coming from. I was so glad when our girls were able to drive, and I get to feel that sense of joy again as my husband, now 7 years post TBI looks to get his license back. It gets tiring, and you don't want to complain, but, dang it, some days, you really just don't want to go anywhere! He's going to need supervision for a few weeks, but I am really looking forward to when he can drive himself places again.
I didn\'t drive for two years and, although it was a strain on my husband, I really made an effort to soften the blow. For example, since he took over much of the \"big\" grocery shopping, I took over the lawn mowing (also bill paying and a few other in-house chores). And I could still walk up to the store for small items like milk, etc. I also took the initiative during sport sign-ups to talk to the parents of my kids\' friends so we could coordinate carpooling. When that wasn\'t possible, we\'d put the soccer balls in a backpack and ride our bikes together. When we had schedule conflicts, I\'d wait with one kid while the other was being picked up, just so he or she isn\'t alone. We definitely scaled back on activities, and had to say no to the kids for plenty of things, but your partner can still be a helpful parent without driving.
I have TBI and even I know that fourteen year olds can ride bikes, take buses or arrange their own car pool rides for classes and after school activities. Making them responsible for their transportation now gives them tools and skills they'll need later in life. And takes a load off Mama and the car. I couldn't drive for a year and I have no spouse so I reached out to those various friends, family and planned ahead for rides. And I still take the bus. It's slower than driving but it gets me places.

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