By Brian LeBlanc
I hate to be a downer. Anyone who truly knows me knows that – that I’m always looking to find the good, to find the laughter, to smile. Because we’re all “on the way out,” only at different stages. For me, with my Alzheimer’s disease and vascular dementia, my “way out” may be a little closer than yours.
And that’s OK. Complications from dementia kills 100 percent of us. Life, even for healthy people, kills 100% of us. So let’s focus on living on the way to dying.
I spent last weekend at (you guessed it) Disney World with my life partner/care partner, Maureen, our granddaughter, Emma, and some close friends. It’s like my 4 billionth time there (you think I’m exaggerating haha), and each time I find something new and exciting. Or perhaps we can find some humor in that it’s only new and exciting because I don’t remember it from before. And you can see from the picture that I was completely helpless against being covered in Mickey Mouse stickers, compliments of our 4 year old Granddaughter, Emma. 🤣
This was Emma’s first visit to Walt Disney World.
Now, THAT’S living! Enjoying loved ones. Enjoying a happy place. Living in the moment. Relishing the time I have left. And I would hope, as my dementia progresses, I’m able to return time and again – even when I can’t communicate or move around freely. I’ll remember Maureen and Emma and other loved ones and the place – even if not by name – as something loving and pleasant.
I have to admit, this time was a bit different.
I have gone through some brain changes since the last time I went to WDW. I still remembered certain attractions, but I couldn’t remember the names of them. That made me very sad.
The BIG BLOWOUT, something happened that never thought would happen.
We were having a great time, especially when we saw the joy and happiness on the face of Emma and her new found friend
Living and Dying with Dignity
We’ve make a lot about a life worth living and dying with dignity in our messaging for #WeAreDementiaStrong, Caregiver Support and Resources, A Bit of Brian’s Brilliance, and our new Podcast. It’s a process. There’s a lot of planning and organization. Thankfully, that’s what Maureen does professionally. But even with her expertise, there’s a lot of learning and adjusting along the long-and-winding road.
We do what’s needed to light the path where it’s most dim, to smooth out the rough areas, to understand complex realities. And I thank God for Maureen coordinating all those doctor appointments, medications, memory-care treatments and outside-the-box thinking. She knows listening to music for a bit can snap me from a fog. She knows when to tell me about upcoming events and appointments – and just as importantly when not to tell me – to avoid unnecessary anxiety.
So as we prepare for the end, whenever that may be, I know we’ll have that life worth living … together.
A Friend in the End
I’ve said for so long that I want to have a living memorial service. I want music, drinks, Hawaiian shirts, laughter, more drinks, more music, and memories (even if they’re no longer mine). Let’s celebrate the good years, the bad years, the in-between years. I hope for a friend in the end – a bunch of friends would be even better!
But death … when it happens … will be a solemn occasion. Lots of people will congregate at the funeral home, waiting in line to see the person they once knew lying in the casket.
They may shed a tear or two, say a prayer, and then they walk away. As they join family and friends, they say things like, “Oh, he looks so good.” or “WOW, their last days must have been hard seeing all the makeup they used.” They may live out of town and didn’t visit or make any phone calls during the last weeks or months, so knowing the details of decline and what to expect would be quite impossible.
These are folks who say, “Well, I would’ve called but I didn’t think he would understand what I was saying. I would have been embarrassed.”
I think you get the picture. But know the presence of loved ones, even if we may not comprehend, is still welcome. It’s actually vital to our well-being.
As my Alzheimer’s progresses, I know it or a related illness will probably lead to my death. But I’m not going to live out the rest of my days waiting for my time to come to an end.
I WANT TO LIVE as much as I possibly can. I want to visit places I’ve never been but always wanted to.
I want to LIVE like there is no tomorrow with no regrets.