Hi there. My name is Sid and I am the adult daughter of a father with young-onset dementia, currently in a moderate to late stage. I’m in my early thirties and my dad, diagnosed in his late fifties, is now 66.
I went through a terrible and ridiculous seven-plus years trying to understand, learn, and process what my dad was going through. The whole damn thing was a circus and a mystery. I spent many years refusing to accept the truths around it and spent a long time trying to treat and talk to my dad as though he had his same mental capacities.
My dad and I were a fabulous little duo. We would harass and tease the hell out of each other – this was a sign of love and respect. I will never forget the very first moment I knew something was wrong…it was Thanksgiving 2007 and we were visiting my brother in Las Vegas. We were standing in his kitchen and my dad walked in from the backyard, leaving the back sliding glass door open. I gave my dad some snotty comment about keeping the door open. And when he turned around and had trouble making contact with the handle (coordination was early to go for him), I kept teasing him. This is how he and I always behaved…we were hard on each other and it was a sign of affection. Usually when something went awry with teasing it was me, the baby girl, crying because he hurt my feelings. Never did I “win” the teasing battle; never did my dad skip a beat or show an emotion other than pure laughter. I had no idea that his brain was not processing the situation normally. Connections were dying and my playful banter did not compute. I know he felt stressed, embarrassed, and confused – but he tried hard to hide it.
My mom pulled me aside and said: Sid, stop teasing, something is wrong with your dad.
That was the first moment she shared with me that she had taken him to the doctor and they had received an Alzheimer’s diagnosis (this has since changed and has not yet been firmly diagnosed outside of simply “dementia”). I did not believe her. I was speechless and I could not process how someone who could do ANYTHING and EVERYTHING could possibly have dementia, especially when his kids were still in our twenties! My dad was far too young and far too invincible for this, I knew it.
When I think back, there was so much more we could have, should have done. So. Much. More. Much of our delay, not unlike what you may have experienced or are experiencing now, was related to acceptance of the disease, or lack thereof. There were many conflicting diagnoses to follow, lots of therapy for my dad (and, well, me too), and a long, loooonnng path to understanding, processing, and properly treating it.
We were clueless and my brother and I unknowingly left my mom all alone to navigate (all of us living in different states)…with pestering phone calls and inquisitions…we did not understand the magnitude of what was to come. We were not very helpful because we did not know how to be and our mother tried to protect us from the sadness and reality as much as she could. As a result, she carried (and still carries) a significant burden.
It is because of her that I am working to help caregivers find some joy in each day and get closer to the right information, tools, and resources.
As you use my site as a reference tool, an escape, a form of comedic relief, please keep in mind that I am not a medical professional. I am a daughter of a father with dementia (sure, I’m educated and I do my best to be well-researched), but anything I share with you or urge you to do should be discussed with your doctor, your care circle, and anyone else you trust in this process. Nothing should be considered medical or legal advice. That’s my disclaimer. Got it?
I have also found meditation, mindfulness, and some chanting to be helpful for me. You’ll notice this in some of my posts. Don’t knock it ‘till you try it…chanting can settle a shaking universe. The core of mindfulness (being present, feeling gratitude for each moment regardless of how crappy it feels) can help you find peace in those moments when you want to shout, “why me????” or “Screw this, I’m just moving to Mexico!” It’s not magic, but it helps.
Please leave your name and email (and a brief comment about your interest in Alzheimer’s disease or dementia) to stay updated and to join me as I share my journey and encourage others to do the same. I want to hear your stories and would love for you to become a contributor. Just send me a note!
Let’s stick together, huh? Even superheroes need help sometimes.