Dementia Days

Sigrun Posing for Photographer

A few days ago, on my way to visit my mother, one of her care managers approached me with a request: My mother’s closet is packed full of clothing, and it is difficult for the care managers to keep everything laundered and organized. Since Sigrun no longer wears most of those clothes, the (very nice and considerate) care manager suggested that I remove some of that clothing from my mother’s apartment.

It seemed like a very reasonable request; a request I agreed to without hesitation.

Then, I found myself standing in front of her closet – paralyzed, unable to remove much of anything. There were some blindingly bright pieces of 70s garb, some sheer blouses in all the colors of the rainbow, tight, form-fitting tops and sleek pants; most items clearly impractical for life in the reminiscence unit.

All of this may sound like the wardrobe of Peggy Bundy, but it is the tool chest of the couture magician I know as my mother. For as long as I can remember, Sigrun has been an impeccable dresser – no, more than an impeccable dresser, a woman with style; not a fashionista following every trend, but rather a connoisseur of elegance that lasts. Her favorite designer – Coco Chanel. Remember the pencil skirts with the tight short jackets? The high heels and the cute little hats? That was my mother, and, if she was still capable of picking out her clothes, it would still be her.

So, who am I to steal colors from the palette of Michelangelo? Sneak instruments out of Mozart’s compositions? So what if my Michelangelo started wearing 13 pairs of underwear at the same time? I’m sure they were carefully chosen and matched in color! So what if shoes didn’t always come from the same pair? I’m sure they, too, complemented each other in my mother’s creative mind!

In fact, Sigrun still holds strong opinions on anything that might compromise a perfect ensemble. When I visit my mother, I am always acutely aware of what I am wearing. As I stand in front of the entry to her assisted living place, I look myself over, regretfully discovering the snot stains on my jacket from my children’s runny noses. I rediscover the little hole that I’ve been meaning to fix in my sweater. And, oh yes, there’s the pimple that’s been forming on my forehead.

And, sure enough, as I then sit across from my mother, the lady who now is confined to a wheelchair and no longer is able to intelligibly utter a sentence, the lady whom I love so dearly, her outstretched finger comes across the table and finds its target infallibly, pointing out the hole in my sweater, or the snot on my jacket, or, unabashedly, the pimple on my forehead. Her facial expression seems to indicate a caring, but concerned recognition that I simply can’t measure up to her understanding of style.

Another Pose

And indeed, I can’t. As a member of the sandwich generation, juggling 2 kids, a mother in reminiscence care, and work, all the while trying to also be a reliable, loving partner to my wonderful husband, I feel I have plenty of excuses for the snot, the hole, maybe even the pimple! Then again, how did my mother do it? She had three kids, worked part-time, traveled, yet always looked impeccably groomed.

Drifting into the oblivion of dementia, my mother continues to set an example for me, not to let myself go, to take pride in my appearance, no matter what the setting, no matter what my mental state may be (and with sleep deprivation and toddler distraction, it often times resembles the early stages of dementia).

Mental note: fix that hole! (since I can’t do anything about the pimple or the snot)

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.