The Alzheimer’s journey is a lot like a spooky, foggy, bumpy winding road. And it's rarely paved.
There are hundreds of twists and turns, and dozens of potholes that throw you off course.
Just when you hit a nice smooth patch, here come a series of roundabouts and you don’t know which way to turn.
And there's no exit ramp.
There are no roadmaps and the GPS isn’t working.
I have been sharing with you, my kind readers, the road my family has been on with Alzheimer's disease.
I say four years, but we’re not entirely sure if we are correct.
When a family member starts to forget things, you don’t jump right to a conclusion that it might be dementia.
At the risk of being sexist, we thought for ages that my brother-in-law Doug was just being a man. He would forget where he parked his vehicle (don’t we all), misplace his eyeglasses, keys, wallet (check, check, check), what he went to the store for and forgetting everything on the list (guilty), and just do random odd things (perfectly normal in my family).
But as time wore on, there were more obvious signs that something more was going on.
Doug, a plumber/pipefitter by trade, couldn’t replace a kitchen tap. He even forgot the saying “righty tighty, lefty loosey.”
We knew, over time, he was still thinking of his profession because he was constantly playing with the taps and checking the toilets. We often found water left on and overflowing the sinks. We had to remove the stoppers. Always, always trying to fix things around the house, as was his way.
As the disease ravaged both his mind and body, there was no denying we were in a no-win situation.
I say all this to tell you we lost Doug this week. But, if we are honest with ourselves, we lost the real Doug years earlier.
There were always glimpses of the mischievous but gentle soul. He found the secret candy stash and squirrelled the chocolate away in his room. He was forever stealing my shoes and wearing them. Whenever he passed one of his four cats, he stopped for a pet and a conversation.
Despite days of utter despair when my sister (his wife) was dealing with incessant pacing and agitation, dirty diapers, lack of sleep and a constant struggle to administer his medications, there would come moments of clarity and humour.
If anybody tells you they never had an emotional meltdown while caregiving, I tell you they are lying. There were outbursts, some non-Sunday school-like language and times we felt like prisoners.
One day, when my sister was a bit angry, Doug looked over at me and said, “What is wrong with her?”
It broke the tension and made us laugh.
Dear caregiver, don’t ever think you weren’t doing your very best, even if you sometimes needed to scream.
Somewhere, deep inside, Doug knew we were on his side. As we recently sat at the kitchen table, making some hard, final decisions, he grabbed our hands and said, “Good job, ladies!”
As fate would have it, he got to pass gently, in the beloved home he himself had built, with his wife at his side and his pesky sister-in-law on the other and his cats surrounding him.
His favourite singer, John Denver, played on the TV on an endless loop singing him to heaven. And, friends, as has been shown to us many times, music is the one memory that seems to remain to the end. Just one week ago, he and I sang dozens of Elvis songs and he knew all the words.
This part of the road trip is over, but no doubt there will be rough and broken pavement ahead for those left behind.
Doug may have forgotten many parts of his own life, but he never forgot us. That gives us comfort.
I will never forget him. He was someone you never forget.