Awakening to the Riches of Dementia-nugget#1

Have you ever been on the phone when someone in your household is trying to tell you something very important and you can’t focus on either conversation? I don’t know about you, but I get flustered and confused-either I turn my back or put my hand up for the family member to stop talking. Well, that is how I felt in the neurologist’s office in March, 2007, when he was giving us the results of  my husband’s CT scan and memory tests. I wanted to put my hand up for him to stop, but I knew that I shouldn’t because this was our new reality. Dave, my husband, who had just turned 57, was being diagnosed with dementia. A week later, the type of dementia was identified-Frontotemporal Dementia.

By the time we left the doctor’s office, I was feeling numb and dazed-almost floating, as we walked to the elevator. For over 5 years, I had been noticing ’red flags’ with Dave-like headaches and not recognizing long time friends-but I was thinking it was related to the stress of teaching high school for 25 years. Then when Dave retired at age 55 and his symptoms actually got worse-it now included seizures and personality changes-I knew that we were dealing with something that I couldn’t help him just by reading the latest  brain book or buying sudoku and Nintendo DS Brain Age games. But I still didn’t think of dementia. Dementia at age 57? I was thinking Dave might have a brain tumour and the doctors would be able to operate and remove it.  If they couldn’t remove it all, at least there would be chemotherapy and radiation to gives us some hope of a cure or remission. And just maybe, the man I married 31 years ago would come back.

At this time, there are no drugs which will cure or even slow down Dave’s dementia. There are no handy little books telling us how to live with dementia, so we are doing our best to make each day count. Dave has been amazing from the beginning. I have asked him several times if he has ever been angry or embarrassed about his dementia and the answer is simple and always the same–no. I want to try to understand what it is must be like for Dave to live in a world that is becoming foreign to him. One day, I asked him what colour his brain was and he said ‘black’. Why? “Because my brain is dying”. I was curious to know if he understood what that meant. He surprised me by saying ”it means I will die”. He told me that he isn’t afraid to die but worries that he may have passed the dementia gene onto our children. He also regrets that he won’t be able to travel to all of the places we dreamed about. You can imagine how emotional I felt while listening and looking at this courageous man. I made a promise  to Dave that we will do our very best to fit some of those dream trips in over the next couple of years.

Lesson #1: don’t put off those vacations you have been dreaming about. If you can’t afford it, then still plan a special time away-maybe not as far.