Yes, I will use the D word

Over the last few years I have found myself avoiding using it. I might say, memory challenge, or memory loss, but not dementia. As I embrace initiatives both at work and in my community to reduce stigma associated with mental illness, I started thinking….what do I fear when I fail to call it what it is? How might dementia wear its own stigma? Do we give off a subtle message that the individual experiencing it has made it a personal choice, or somehow “caused” it? Or is it by naming it, we accept it as real.  Or maybe, we think if we avoid it, it won’t next occupy us. Well-meaning family and friends aren’t always quite sure what to say or how to behave. They want to do best, but it’s easier to ignore, avoid or pretend whatever is happening will be better tomorrow. Yes, sometimes tomorrow is a better day for those with dementia. And sometimes it isn’t. And if it is, it doesn’t make it like yesterday. And with dementia perhaps we think – not me: I do all the “right” things. Yet, none of us know the entirety of the secret sauce for good health until death, and it is probably fair to say it really doesn’t exist. Yes, it happens, but eludes us as to why it does, and why sometimes it doesn’t. 

Last year Mom gave me permission to write about her. For after all, as she said, it was my writing. That made me feel comfortable to share my essay, Even when you call me mother, my foray into sharing publicly about this stage of life for her. And yes, dear readers of Beyond the Ripples, although character Gloria is almost the opposite of what our own mother was during our childhood, a few sentences Gloria shares about getting older and its accompanying losses came to me through Mom’s mouth. And so, I again take on sharing part of this experience of aging. For, as Dad was so public about both losses and wins as he moved through recovery as an alcoholic, we all become better people to those around us when we have an insider’s view of life’s difficult journeys.

I am fortunate to understand Mom better through her sharing of previous writing and memoirs, such as this entry when she was 81.

Aging 3/14/2014

”I felt great moving into my 80’s, walking daily, hiking down into Tanner Springs basin, to Safeway for groceries, (thanks to my backpack), reading a lot of books, having monthly eye injections for AMD, and talking to my sisters either by phone or through Skype. Smug no. Just grateful, and available…..Last Tuesday afternoon I was sitting on an old cane chair, changing clothes, and slipped right out of the chair as if it were a pot of jelly. I scraped my arm on the bed board and realized I simply could not get up. I yelled for Dick. He gently picked me up, brought me a large bandage for my bleeding arm and put me back on the bed, where I remained for the afternoon. It upset me deeply, because I remember both parents taking falls in later life….Am I really that old? Always being independent and hesitating to ask for help, I am forced into it. I must remember to go slowly, using my walking sticks, and be patient, which run counter to my innate personality, and habits.”

From Patty Montgomery’s essay, Honoring our Memories class , West Linn Adult Community Center, March 14, 2014.

Most days Mom will assert that she has had a most wonderful life. She challenged herself intellectually, getting her masters degree in special education while I was in high school, and her doctorate as I worked on my own graduate degree, going on to teach at Marylhurst University. She remarried her life’s love after he started his own path in recovery from alcoholism, living and enjoying their sixties and seventies traveling, hiking, and spending time together until his death, mid-way through his ninth decade. She has been a doting grandmother, and still is, even though it is different than it was when her eldest grandchild, now 29, was born.

And yet, she too heavily acknowledges her losses. Although Mom adopted healthy eating and exercise well before it was fashionable, she was sleep challenged. She recovered from Lupus late in life, which is in itself an accomplishment, and yet one that may have left her with detriments none of us fully understand. She has lost a good deal of her vision, some hearing, and now, her memory. Her biggest fear – and she shares it often with me – is that people think she is stupid. She feels that she continually makes mistakes. We talk about memory loss versus intellect. Some days she buys it, but not on bad days. Occasionally she is ready to die, and other days she fears it. I remind her of her legacies. I remind her of the kindness she has given to many in this life, and how much love so many have for her. Some days she buys it, but not on bad days. Yet each time we get out into the natural world, or listen to music, some of her self pulls itself forward. We are in the moment, which we remind ourselves, is all that we have. 

And I continue to learn from my mom, as I have throughout my life. I try to practice the kindness that both of my parents embodied. I try not to take myself too seriously, and look for ways to reduce anxiety and fear that I now know never really left Mom. I’m reminded of the friends that dropped off after Dad died, and the ones that stopped reaching out when she entered into dementia: and promise myself to do differently. I remind myself to take as many moments as I can to reach out to everyone in whatever way I can. And while sometimes we tell ourselves it is our real friends that stay with us through thick and thin, could it be that those who don’t never learned how? Might they be frightened they may say the wrong thing during our grieving or loss? Or is it that it makes them feel guilty: they are still doing well. Or a number of other potential reasons. And so I say: Take a breath. Follow your heart. Hold a hand. Just be with them. See what happens next. And trust that we always gain as much as we give.

Mom and me doing our usual thing, enjoying the Willamette River. September 2019.

5 thoughts on “Yes, I will use the D word

  1. This was so beautiful Dede. I loved and was saddened by reading your mom’s entry, and so moved by your sharing of this experience of life with your mom. Love to both of you.


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