Dementia Days

For as long as I can remember, the humorous value of bodily functions has been deeply ingrained in my family. Whether someone starts to giggle uncontrollably as an odoriferous cloud spreads around them, or anything, anything at all, hints at the subject of farts, my family soon has tears of laughter running down their cheeks.

Strangely enough, we’ve always prided ourselves on our intellectual properties, our higher reasoning. Yet, relate a story involving someone passing gas, and all that brainpower disintegrates into a sobbing-with-laughter mess.

In the world of dementia, it can sometimes be a struggle to find things to talk about, let alone to laugh about. We lose so many ways to communicate with our loved ones, one after another, that it becomes more and more difficult to experience moments of closeness and understanding.

And so it was with unrestrained joy that I discovered that our family’s holy grail of humor not only survived in my mother, but flourishes. Sitting next to her as she lets one rip, and then breaks out in a cascade of laughter has me hugging and kissing her and laughing along with her.

In a way, dementia can be quite liberating. Tossing aside societal conventions for a roaring laugh about a fart that makes my mother’s wheelchair tremble is absolutely worth the multitude of offended stares it attracts; not to mention my 4-year old and 2-year old’s excitement to have a partner in crime in “stink-bombing” an entire room.

Over the course of the last year, my oldest sister has been working hard to clean out our parent’s storage unit. One day she found a cartoon of a little boy blowing with great effort into a trumpet; the only result of the efforts being a small music note hovering next to his behind. (I would have liked to post the image here. However, I couldn’t track down the copyrights, so thought better of it. If any of you know who holds the copyright, please, let me know, and I’ll see whether they let me post it.)

I have since taped that cartoon to my mother’s closet where she can see it from her bed. And, so many times when I’ve visited her, I’ve seen her studying the image with a smirk on her face and a twinkle in her eyes.

Dementia for me (in my mother) has been a journey of discovery, of unexpected twists and turns, many sad, but also a great many happy, enriching, and down-right funny. You never know where you might find a connection, some closeness, some shared memories; and it doesn’t pay to be picky and choosy. I intend to make every one of those moments count.

On December 17^th, 2005 my father died. He was a sharp witted man of the World War II generation, happy to tell many a fantastic tale (some quite fictional, I’m sure), generous in spirit most of the time, and a man who guarded his privacy as a treasure never to be touched.

He also protected the little unit he and my mother, his wife, had become after all three daughters had moved out.

I, the youngest of the three, will turn 40 this year, and I cannot claim that I was completely naïve to my mother’s dementia. Yet it felt easier knowing that my father, although in his eighties was standing watch, when there seemed something not quite right with my mother – something that hadn’t felt right for many years already.

When we came together as a family to mourn my father, we instantly knew that my mother would not be able to continue living in the apartment they had shared. We also knew that we needed to get my mother diagnosed, as the word “dementia” started to cross our lips more and more frequently. There were many things we knew, and oh so many more we had no idea about.

It took a few months to get the definitive diagnosis of Alzheimer Disease, and another few months to get my mother who could still be considered to be in the early stages into an assisted living facility with dementia care (the politically correct term these days seems to be “reminiscence care”).

That time now seems an eternity ago. Many tears have flown since, many long conversations between the sisters reminiscing about the past, speculating about when it all may have begun, have taken place; many (web-)pages have been perused to learn about this tragic disease, to understand beyond the stereotypes, what lay ahead.

So, now you’re saying, why the heck is your blog called “Dementia Days – The LIGHTER Side of Loss”? Nothing light so far. Well, you’re right, what I actually want to focus on in this blog are the moments of humor, the lighter side of the loss all of us encounter who have a loved one with dementia, who care for somebody with dementia, and also those who have dementia. The literature is filled with depressing facts and figures. Many moments around dementia are intensely sad. So to balance out all of the tears we have shed and frustrations we have encountered, I am writing to share the laughter, the smiles, and maybe even the sparkles in the eyes when smiling doesn’t come easily anymore.

The first entry simply served to give you a quick background on my experiences with dementia. I promise to delve into some of the fun my mother and I are still having now that she is in the late stages in my following blog posts.

And, of course, your comments, be they humorous or not, are gladly welcomed.

I’d also like this blog to be a place to share knowledge, wisdom, tips and tricks we have picked up along the way; information that travels better by word-of-mouth (or in this case “word-of-blog”).

I dedicate this blog to Sigrun, my mother, the woman who has lived such a full life that even Alzheimer Disease can’t stop her radiant person.