Why is Nana/Papa So Strange?
I was much younger than today when I first heard my 6 year old son ask that question about his grandfather. I honestly did not know what to say. We had been living with “Papa’s" dementia diagnosis for maybe a year or two at that point. He and my mother-in-law had been living with us since the spring and on that day, we, our family, were walking along a wooded trail behind my son's school, admiring the beautiful colours of the season. It was the perfect fall day, with muted sunshine filtering in between the leaves that danced in rhythm with the wind. I have a picture I took that day and it stands as a time capsule that reminds me of so many details of that day. It's funny how different memories can be so clear one day and so distant another.
Dementia was not talked about back 25 years ago, when we took that walk. To be honest, I question whether we still bury our heads in the sand and refuse to acknowledge our own decline as if by doing so, we can delay the diagnosis. A 6 year old could see that something was wrong with his Papa; why are we not asking more questions and seeking more answers? Now is the time to talk about Young Onset Dementia, while that window into our minds is open for a limited amount of time. Tomorrow may be too late. At least for me.
I would wager to say that anyone reading this article knows someone with Young Onset Dementia, even if that friend or family member denies having more than a few “small” memory issues.
You may be seeing any number of symptoms, which, in themselves don't amount to much. Such as using inaccurate words when talking and denying that we EVER said what you think we said. Or we forget an appointment, even though you reminded us multiple times the day before. Maybe it's the way we get flustered when you talk over the TV or during a phone call when we are trying to focus. Or, how about the questions we repeat through out the day which you have already answered an hour ago? It frustrates our friends and family, but, believe me, it terrifies us a lot more than it does you.
If you could be a fly on the wall in the home of an YOD person, one of the first things you would see, can only be described as confusion. We can't seem to remember things as simple and routine as brushing our teeth, taking our pills or which cupboard the coffee cups are in. We no longer seek out friendships or activity that would take us out of our homes, because, to venture out takes a lot of courage, and we are anxious that someone will see something missing in our eyes or in our smiles. What you cannot see is the slow, decline of our sense of self and our personalities.
I'm not saying these things to elicit sympathy or encourage more compassion. People generally are compassionate when they know we have dementia. I don't want to make anyone feel guilty, but I do want to point out that YOD is a disease that begins much earlier than when it is finally diagnosed.
The one thing I do remember the best about our family walk in the woods, was not the way my father in law shuffled his feet in the leaves on the ground, or his child-like wonder on finding a butterfly so late in the season, but his ear to ear smile as he walked hand in hand with our 6 year old and 2 year old. That was when I clicked that moment in time, which I will always cherish.
Dementia is not a dirty word. It's not something we should pull away from as community members, caregivers, friends, or shy away from as professionals. Did you know there are over 50 million people worldwide that have been diagnosed with Dementia? How much higher would that number climb if it included the number of people experiencing symptoms of Young Onset Dementia? However, the professionals who deal with these numbers, are apparently not diagnosing YOD until sometimes years after the beginning of symptoms. Perhaps what we need to look at is converting the numbers into people; actual living, human beings who need doctors and caregivers to start listening to us. No one knows what dementia is, more than those of us that are slowly losing our abilities and the time to communicate.
Tomorrow, when my 5 year old granddaughter asks, “Why is Nana so strange?” I hope she is met with a compassionate, loving and understanding reply: “She's just dancing to a song we can't hear. She’s walking thru the fall season of her life and let’s just love her while she's with us.”
In future articles, I would like to address more symptoms and solutions, handy little adjustments to our daily lives, which can actually slow down the progression of YOD.
Walk with me.
Rose (Girouard) Ong is a writer, poet, retired accountant, married for 34 years, mother, grandmother and a founding member of YODA Group (Young Onset Dementia Action Group) that meets through Memory Lane Home Living (www.memorylanehomeliving.ca). To be part of this conversation, email us at firstname.lastname@example.org
“In a dark place, we find ourselves, and a little more knowledge lights our way” - Yoda