Three years ago when Dave was diagnosed with Frontotemporal dementia (FTD), the specialist told me that it was up to me to decide when he wasn’t safe enough to drive our grandchildren (if we had them). I kept pushing that responsibility away because it felt too heavy. I was already adjusting to the increasing load of being a carer for my husband, without taking on this decision as well. But last fall I reached a point of clarity and realized that I had to get my head out of the sand. Dave was a danger on the road. He spent more time searching for wildlife in the fields and pointing out full moons (on blind corners) than the cars on the road.

For most people, driving is their ticket to freedom. I fully ‘get’ that. Dave loves to drive, and honestly, it was my ticket to freedom as well. It gave me time to be alone, while it gave Dave a sense of purpose and contribution as he did errands for me every day. Having a reason for getting up in the morning is what keeps us happy and healthy. This is one of the reasons why retired people who volunteer stay healthy—physically, mentally & emotionally.

When Dave lost his license, it has been more difficult than I imagined. Despite the inconveniences (9 km. from the nearest bus stop and added chores to my list), I understand why he shouldn’t be driving, but Dave can’t. One of the features of FTD is poor insight and reasoning abilities–frontal lobe. Although Dave has an amazing attitude towards accepting his condition, he is stuck in this area of driving. He feels cheated that he wasn’t given a proper test and that he walked into the doctor’s office with a license and walked out without it. There are 2 places in our province where he can appeal the doctor’s decision, but I am not willing to drive him or spend the money because I know he is not safe to be on the road. I would like to see a test which is easy to administer locally, affordable, and accurately tests their abilities. A test where the person with dementia has a sense (if that is possible) why he shouldn’t be on the road.

So my question is…how can we handle this issue with more ease? There is money going into researching the causes and treatments for dementia but what about the day to day reality of living with it? Where are the systems to help us deal with a problem which seems to be at, or near the top, of stresses for both the person with dementia and their family?  I would love to have a driver twice a week to take Dave where he wants to go, and to run some of my errands. He wouldn’t feel ‘trapped’ and I wouldn’t feel like I am bailing water out of a boat which keeps filling up. If you have suggestions or creative solutions I would love to hear from you:  hollyeburne@gmail.com.

© 2010 Holly Eburne

So why am I feeling sad today? Because I had a small taste of what Dave must be going through as he gets closer to the date when his driver’s license will be taken away. My situation is temporary. Dave’s is permanent. I will wake up tomorrow and exchange one set of keys for another. I will still have my freedom to come and go as I please. Not Dave. He loves driving more than I do and this is the first time since he was diagnosed 3 years ago with Frontotemporal dementia that he is kicking and screaming. I get it now.

Dave is losing his ability to reason and has poorer judgment, so it is no longer safe for him to be driving. Unfortunately, he is the only one who doesn’t understand it. It doesn’t matter how much I reassure him that he will still be going to his woodcarving meetings and to the gym with his friend, Doug—this is little consolation. He is feeling pretty crushed these days and even wondered if he would still be allowed to ride his bike on the road.

The next few months are going to be challenging for both of us (nearest bus stop is 8 km. away) We have managed to weather the past 3 years in good shape and I expect we will continue growing and adapting as more bumps come our way.

I am amazed at how quickly a stray, ginger cat with white boots–purring on my lap– can lift my mood. It hasn’t been an easy 2 weeks since my husband, Dave, received a medical driver’s form to be filled in within 45 days–or he loses his license. There is a .001% chance he will be allowed to continue driving. 3 years ago Dave was diagnosed with Frontotemporal dementia and the specialist warned us this day would come.

Dave has a remarkable attitude toward his dementia. He hasn’t been angry or upset…until now. He has some insight into his condition– he knows his personality is changing quickly and thanks me for ‘putting up with him’. But, he doesn’t understand why he should lose his license. “I will sue the doctor who takes away my license”. I turn blue trying to explain why he is a risk on the road, but it doesn’t penetrate his illogical brain. He LOVES driving and there is no getting around it. Dave wants to take the test and show them he is a good driver. Before he takes the road test, he has to pass a 50 question written exam. “Do you think you can pass it?” He quietly says…”probably not…but I still don’t see why it makes a difference just because I have Alzheimer’s?” He forgets he has FTD, not Alzheimer’s.

Winter is coming. The shorter days and lack of sunshine makes it more difficult to feel happy. I understand that I shouldn’t let external circumstances dictate my moods; sometimes I can’t help it. Life isn’t always fun. Living with dementia is much harder than I thought; much longer than I imagined. My mom and sister had cancer, and their disease followed the time lines set out by the doctors. The acute pain and grief of losing them, plus the roller coaster of emotions, lasted less than a year. But dementia isn’t following any neat guidelines. I find myself shaking my head when I listen to Dave struggling to find words, or when I look at him sitting on the couch with a vacant stare. I can’t believe this is the strong, funny guy I married 31 years ago.

As I sit here writing my story, it is 4:30 am—the best part of the day. I have a cup of coffee, my computer and best of all…I have Marty, purring on my lap. When I pet his soft fur or look at his adorable white boots crossing over each other, I momentarily forget about the worries of running the household or taking care of Dave. At 6 o’clock, I let our springer spaniels, Riley and Emma, out of their bedroom; I laugh as they wrestle each other to the door. There is over 30 stellar jays and Clarke nutcrackers waiting in the trees for their morning peanuts, and dozens of goldfish in our pond weaving through the reeds.

Being outside–surrounded by nature and animals–is my salvation. It interrupts the chatter in my brain and gives me mini breaks of fun and laughter. It cuts through the winter sadness–lifting my spirits enough to show me how great my life is. I am forever grateful to these creatures. They live a simple life; in the moment… reminding me that life doesn’t have to be as complicated as I make it out to be. I never imagined that a ginger cat with white boots could start my day off with such magic.

My Sister Kissing Marty’s Boots

Why am I telling you this? Because I took one of the biggest steps out of my comfort zone this past spring when I signed up to be part of an Overcomers project. Thirty-eight authors submitted a story about an event they overcame in their life. Overcomers Inc.-true stories of hope, courage and inspiration is the brain child of Lynne Klippel. She was looking for an uplifting book to help her brother during his ’down’ times while he was undergoing chemotherapy. She thought it would be wonderful to have a collection of stories from ordinary people who have faced challenging times in their life and have come through them with courage, strength and wisdom. Lynne wanted this book to help more people, than just her brother.

Writing a chapter for this book is one of the hardest things I have ever done. I had to put aside my ego and fears (ongoing process!) to publicly write and be willing to ‘let go’ of my insecurities. I have a story to tell about the lessons I am learning from living with my husband’s dementia; I desparately want to share them with others.

I am very proud to be a contributing author to this incredible book. At a time when we are bombarded with bad news–whether it is about the economy or the latest flu virus–this book is going to be the lifesaver for thousands of people. You will find 38 different stories–all of them uplifting, inspiring and giving you hope that you can overcome whatever challenge you are facing in your life.

To give you a sample of one of the stories, here is an excerpt from a very good friend of mine, Barbara McCollough:

When Grace Comes to Get You               
Barbara McCollough  

How can I explain this moment when inspiration broke through in the form of the poem and led me from paralysis into action?

I can’t. Or not in ways the linear mind can report. A teacher once told me that the path to a fulfilling life was like the flight of a two winged bird: one wing was self-effort and the other grace. Without both, a bird won’t fly and neither will our lives. Dogged adherence to effort can take you right into a place you don’t even want to go, yet simply waiting for inspiration without accompanying action leads to paralysis (insightful paralysis perhaps, but still paralysis). It is the true partnership of self-effort and grace—inspired action – that is the secret to success. 

If I were to frame my experience as overcoming an obstacle, perhaps what I overcame was a tendency to let my ego do the driving. I opened myself to that mysterious other force that we all know and describe in our own unique way, that we can never control, but we can always depend upon.

On your path to fulfillment, you don’t have to row upstream, and you don’t have to get in the boat alone

Later this month a geat new book  titled ‘Overcomers Inc.: True stories of hope, courage and inspiration’ is being released. Here is a summary of the book:

Overcomers, Inc: True stories of hope, courage, and inspiration will give readers the knowledge and emotional resilience to face the most difficult times of life by sharing inspiring stories of triumph.

You will find this a book of diversity. There are many authors, from many walks of life. However, they all share a common bond. They triumphed over tragedy and gleaned wisdom in this process. While this is not a religious book, there are stories full of faith, of many kinds and flavors. It is funny how in your darkest times, faith often becomes your brightest light.

All of the contributors to this book want to encourage you to hold tight to your belief that a better day will come. It is their sincere desire to pass along what they’ve learned through their own trials, to make your journey easier.

Here is a sample of one of the stories in the book:

 When Tough Times Hit, There Is Always HOPE!
Mary Hays-Bridges

I was facing something more difficult than trying to survive the devastation from a negligent act. I had truly lost my sense of identity, purpose, and life goals. I could survive being a helpless invalid, but to be hopeless would be downright tragic.

My job in life now is to help others set new dreams and learn about survival – through Him. May my story impress upon you that HOPE can bring you through life’s trials! Dreams DO come true! All things ARE possible! As a coach, “HOPE” now has added meaning for me – “Helping Others’ Possibilities Endure.”

1.  Before going to sleep, answer: “Today has been a good day because____________________________.” Focus on the people you love, the things that inspire you, the daily details that are within your power to change. Happiness is found in these small details of life.

2.  Keep a goals/gratitude journal. Today, what action step did you take towards your goal? Focusing on goals gives a renewed sense of purpose, adds confidence, cultivates self-esteem, and adds structure to life. Writing down your action steps and daily progress is a positive reinforcement. Counting your blessings adds a measure of humility, compassion and keeps optimism alive.

3.  Read and/or listen to motivational and inspirational books.

4.  Use pictures and sayings to make a focus board collage for each goal. Seeing these positive affirmations daily enhances your endurance and strength. Become your own cheerleader through positive self-talk. 

                                                                                                                                                      Happiness + Optimism + Perseverance + Endurance = HOPE

When tough times hit, never give up HOPE!