The Loss of Freedom With Dementia
July 8, 2009 by Holly
My husband, Dave, who has Frontotemporal Dementia knows that his driver’s license will be taken away, but we aren’t certain when. We have a friend who was recently diagnosed with early onset Alzheimer’s and when he went for his initial visit to the neurologist, his license was taken away that day. If someone has a diagnosis of Alzheimer’s or related dementia, the rules for driving are very strict. If the doctor doesn’t think that you have enough ‘reasoning’ ability to handle emergency situations (determined by the cognitive tests in the office) then your driving days are over. There will be no 2nd chances or road tests. Since the rules are stricter and Dave didn’t score well on his tests, I doubt that he would still be driving if his initial doctor’s visit was this year, instead of 2 years ago.
Our lives are going to change dramatically when Dave loses his license-one of our biggest challenges is the fact that we live in the country and the nearest bus stop is 8 km. away. Many of our friends are surprised that he is still able to drive and have offered to help out when needed. I have started keeping a list of their names and phone numbers because I know some day they will be part of my ‘assist’ plan. Another issue is that Dave loves to drive. It is his ticket to freedom to go to the gym, take the dogs for a hike or to run errands. When Dave picks up groceries or takes the garbage to the dump, it not only helps me out, but it gives him some structure to his day. He feels better when he has a good reason for getting out of bed in the morning and that he is helping out around the house. Since there are some things, such as contacting service people or cooking meals, that Dave isn’t able to do any more, we have switched chore lists to make it work for both of us.
Every time I watch Dave drive away in his truck, I am reminded that he will be losing his freedom-likely within a year. It is weighing heavily on my shoulders because the doctor said it was my responsibility to report when Dave wasn’t safe enough to drive our grandchildren-if we had them. I feel those guidelines are too subjective and I am going to pray that someone intervenes on my behalf. Fortunately, Dave is doing fairly well with his driving-other than the odd reminder to slow down or to stop pointing out the redtail hawks on the fenceposts! Actually,he has driven that way for as long as I have known him-over 34 years. I used to get so annoyed that I would threaten to put those suction window shields on his driver’s side window-the type that keeps the sun off the kids in the back seat?
Nina on Thu, 9th Jul 2009 5:07 pm
Holly,
You have a talent for writing, please keep it up. I have an aunt with FTD. You are right, it is underexposed compared to the other dementias, especiallly Alzheimer’s.
I think it is especially heart breaking because of the impulsivity issues and their repercussion associated with the atrophy of the frontal lobe.
Thanks for putting a face on FTD with you and your husband.
Nina
hollyeburne on Thu, 9th Jul 2009 5:31 pm
Hi Nina,
Thank you kindly for your words of encouragement. I didn’t know if I was too raw being on this new journey with FTD, but I felt called to share our life, and lessons, with the world. There is so little information on FTD and I want to help raise the profile of it.
I really enjoyed clicking on your blogs-I am going to spend more time reading about your cat and chihauaua (spelling?).
Great to connect with you and all the best with your aunt.
Warmly,
Holly
sara g on Mon, 13th Jul 2009 8:46 pm
Dear Holly
My father lived for 6 years after being diagnosed with FTD. He also had primary aphasia which affected his speech. He was the bravest man I knew and I made sure he knew it. He died on June 6 @ 8:56 pm. There is so much I could tell you about his journey, but I think it best that you get the answers when you you are ready to ask the questions. Try to keep humor in you life together and focus on the things your husband can still do. Through reading your blog it seems you already do that. If you ever have a question, feel free to e-mail. Maybe I could be a little support. There are not many families or physicians who know much about this disease. I was with my father every step of the way.
Sara
hollyeburne on Tue, 14th Jul 2009 9:01 am
Sara,
Thank you Sara for commenting on my story, and I was quite emotional when I read your story. I am very sorry about the recent passing of your Dad and it felt comforting to read about you being with him until he took his last breath. He is a lucky man to have a daughter like you.
I understand when you say that few people know about FTD, and one of the many reasons that I have decided to start writing about our life, is to raise awareness in the public-even to the doctors. My other reason is to share the lessons that life is teaching us, so that other people dealing with their own challenges might learn from our perspective.
I also appreciate your support and offering to answer the questions as our journey continues. It was very wise of you to comment, that when I am ready, I will ask. Little bits of the ‘reality’ of our future are slowly seeping in,(I think that is a good thing)and you never know, even my children (Amy-25 and Kyle-27) might ask for some guidance.
Please stay in touch. Thank you.
Warmly,
Holly