Awkward, Hysterically Funny, Surprisingly Touching.
Venturing out in public with my mom, who has severe dementia.
If you follow me on Instagram, you will occasionally see selfies of me, my mom, and often my sister Katrina, with the caption, “Mom time!”
Those two words mean a lot more than you’d think.
That I can photograph my mother at all is a function of dementia so advanced that she has forgotten she hates to be photographed, so she no longer makes ugly faces at the camera. The last two years have produced the largest trove ever of good photos of my mom as an adult. She is 85.
Dementia has few silver linings. It is a relentless deterioration of the brain - not just memory, but all function. At this point, it has reduced Mom to the equivalent of a toddler in terms of coherence, awareness, logic and propensity for getting into trouble.
Mom is an incredibly lucky woman, because my sister Katrina takes care of her full-time in their rural home in the Sierra Nevada foothills, where clear skies, black and live oaks, ponderosa and bull pines, California quail, ravens and the odd duck or two on their seasonal pond make life more beautiful. Katrina has experience in home health care, so she’s actually qualified for the job. She has also worked in nursing homes, which is why Mom will never go into a nursing home. Like over-Katrina’s-dead-body never.
For a while, I would go spell Katrina from time to time so she could get away for a weekend. But we missed having time together. It’s been years since we’ve gone to the movies. So now we go do things together, with Mom in tow, because we can’t leave her alone.
Oddly enough, we have fun. Often a lot of fun. It’s pretty easy to make Mom laugh with raspberries and atonal singing. This worked before she had dementia as well, so it feels surprisingly normal.
Sometimes, she has angry outbursts. At first I found this awkward and upsetting, but no longer. One day, the three of us were shopping on historic Broad Street in Nevada City, an old Gold Rush town that looks like a slice of New England. We’d just visited the hat shop, followed by the truffle shop, and we were heading back to my car when Mom suddenly hissed at us: “Will you two SHUT UP!!!” It was like we were little kids again, behaving badly in the supermarket.
“No,” I said, indignantly. “YOU shut up!”
Understand that these are words my sisters and I never said to our parents growing up in the 1960s and ’70s, because we valued our lives. So as soon as the words left my mouth, I began laughing hysterically, and so did Katrina. Within a few seconds, Mom forgot whatever she’d been thinking, and all was well.
That was a watershed moment for me. Every step of this journey need not be grim, anxious or forlorn.
One of the most remarkable things to me when we go out now is how total strangers react to Mom: They are kind, and for the most part, they engage instead of shrinking away.
We had a big day out Saturday - not for Mother's Day, because Mom has no idea what that is and rarely realizes we are her children - and she was being really gregarious.
We toured the lovely garden at Ananda - a spiritual community on the San Juan Ridge up the road from where Mom and Katrina live - and Mom talked to everyone she saw.
There was a time when that was dicey because she would often spin a tale about how we were trying to kidnap her, and I lived in fear that Katrina especially would be accused of elder abuse. But Mom can't complete a sentence anymore, so no matter what she says, it’s immediately obvious to the listener that her brain is not working correctly.
So people feign interest or understanding, answer Mom's nonsensical questions, and smile genuinely before we pull her away.
Mom goes absolutely bonkers over small children. She coos and reaches out to them with both arms, and astonishingly for this day and age, the parents don’t yank them away as if Mom’s a threat.
Mom tells women they’re beautiful, and they light up and thank her. She LOVES men and will lock them in an embrace if we’re not careful. In one case, Katrina tells me, a scruffy old man at a local cafe lit up when Mom hugged him, looking like he was thinking he might get lucky, before Katrina pulled Mom away.
In all of our travels this weekend - Ananda, a pottery shop near North San Juan, a restaurant and two antique stores in downtown Grass Valley, and a frozen yogurt place - there were only two interactions where Mom was not treated normally. An older couple at the yogurt place was clearly very uncomfortable when Mom started talking to them. And a towheaded toddler in a stroller coming from the opposite direction on the sidewalk gave Mom a sustained, angry, “WTF?!?!” look that made Katrina and me giggle uncontrollably for a full city block.
All of these things make me very aware that we just don’t see a lot of people like my mom when we’re out and about. Most people with dementia are kept at home or locked up in “homes,” or if you see them out, it's because they have escaped.
I don’t honestly believe that it “helps” Mom to go out like this, because she can't remember anything for more than a few seconds. We’re not giving her happy memories. I suppose we are, at least, giving her happy moments.
But it definitely helps me and Katrina, because it’s giving us happy memories, and making the very best of a difficult situation, one in which Katrina carries 99% of the weight.
And maybe it's helping society too. Most of the time we all go through life assuming that everyone else should behave rationally, drive perfectly, and speak politely, while expecting others to give us leeway to be flawed human beings. My mom reminds everyone, vividly, that each of us is not completely in control, and, you know, there but for the grace of God go I.
The hardest moment Saturday was in the backwoods pottery shop in a barn at the end of a dirt road, where I was looking for pieces for my food photography collection. At one point, Katrina mentioned to one of the potters, Penelope St. Claire, that Mom had been an artist, and Penelope started asking questions about Mom's art, as fellow artists do.
I saw that I had cell phone signal, so I opened Mom's website and showed them some of her work with glass and bone:
The potters' jaws dropped. “WOW,” Penelope exclaimed.
Dementia is a long process that Katrina likens to a helium balloon slowly dropping from the ceiling as it deflates, getting closer and closer to the floor. When changes happen that slowly, it’s easy to forget that the balloon was once bright and full, bumping urgently against the ceiling.
Mom the amazing artist is gone, never coming back. Thinking about what she's lost- what we've lost - hurts.
So I put my phone away, handed Penelope a twenty for a lovely bowl, and gathered Mom up for the next stop of the day.
“All right, Mom, we’re going to lunch!”
“No, Mom, this way.”
“Mom!”
If this post got you thinking, please give it a like, share it (it’s free), and above all, leave a comment (comments are open to all subscribers, free and paid). There is much more that can and probably should be said on this topic, but I would enjoy it much more as a conversation with our community of readers.
An earlier post in which my mom plays a role:
What beautiful art, sounds like she lived life well while she could…what more can one hope for?
Great writing on such a sensitive and difficult topic. Nicely done!