When you spend fifteen years caring for a dementia patient/parent, it can be easy to lose track of the good things.
Here’s the truth about dementia: it isn’t just about forgetting what you had for breakfast, or wandering around the neighborhood because you no longer know where you live. Those things are bad enough, but not as bad as some of the other symptoms of dementia. It can begin with a mania; in my mom’s case, at the age of 75 a woman who had always been healthy and cheerful abruptly became an anxious hypochondriac whose life devolved into a circus of ER visits, doctors’ diagnoses and prescriptions.
Over time other symptoms manifested, including mood swings, delusions, hallucinations, somniloquy (which usually means just talking in one’s sleep, although my mother might scream in the night and have no memory of it later), and accompanying physical problems which I won’t detail here. During the last few years of her life, Mom – who’d always been very social, with many good friends – was unable to hold a conversation.
I went through all of this with her; I officially took over all of her care in 2012, when her domestic partner was no longer able to keep up with it all. When he passed in 2014, I became her live-in caregiver for the next two-and-a-half years…the hardest time of my life.
All of this is why I say that the passing of a long-time dementia sufferer flips the usual stages we go through after losing a loved one; when my mom’s body finally forgot how to breathe on January 29, 2023, I felt as if I was at last able to stop grieving.
Now I want to recover the memories of her when she was whole, before this fucking disease (and, frankly, some of the treatment she received from doctors who were only too happy to add yet one more useless yet potentially dangerous drug to her regimen) robbed her of the most essential things that made her an extraordinary human being. Dementia caused her to become exactly the opposite of what she wanted to be, and I hated the disease most for that reason. So indulge me while I list some of my favorite special moments with the woman who was my hero, my best friend, my protector, my teacher, my mother.
- When I was very small, maybe four, I wanted to be a magician. I had no idea how tricks really worked, so I’d do goofy things like take one of Mom’s bracelets, put it on a tray, drape a napkin over it, close my eyes, and try to imagine it disappearing…and it did. It wasn’t, of course, until years later that I realized Mom was sneaking in and taking the bracelet while my eyes were closed (an act she never fessed up to!), and now that seems like such an extraordinary gift – allowing your child to believe in magic.
- She loved movies, and she loved horror movies. We’d often stay up late together on weekend nights, watching whatever old horror movie was on one of the dozen or so television stations we got at the time. She’d make us sundaes or popcorn, and we’d watch enthralled. Her favorite was a 1973 Spanish oddity called It Happened at Nightmare Inn (aka A Candle for the Devil), about two sisters who run a hotel in a small resort town and one of the sisters is a whackjob fundamentalist who kills any guest who doesn’t match her high morality standards.
- Mom’s holiday was Christmas, but 1988 was a hard one because my stepfather Hjalmer – the love of Mom’s life – had died unexpectedly that June. She decided she wanted to do something adventurous that year, so she booked us into a winter resort near Victoria, B.C. She lived in Portland, so I flew up to Portland, then we drove to the resort. On the second night there – Christmas Eve – we both got a horrible flu. This sounds like a terrible memory, but we laughed about it even while we were shaking with illness in the huge, single-room drafty cabin we shared at the resort.
- When she moved from Portland to L.A. (in 1995, I think it was), I flew up to Portland to help her pack and then we drove down together with her darling dog, Toto, who we surreptitiously snuck into hotel rooms that didn’t allow pets. We felt so naughty.
- As a child, other kids always wanted to play at my house because they liked my mom so much. That was fine with me, because I thought my mom was cool, too.
- Mom loved to dress me up, especially at Easter; every spring I got stuffed into frilly little dresses and patent leather shoes, and then taken to the Methodist Church in Arcadia, the suburb of L.A. where I spent a few years (we moved a lot because of Dad’s work). I hated Sunday school, which I mainly came to associate with being handed graham crackers by kids with runny noses and sticky fingers. I was probably 8 when I asked Mom why we came here, mainly on holidays. “Do you believe any of it?” she asked. I told her I didn’t. “Oh,” she said, “then we won’t come anymore. I just thought you should have the chance to make up your own mind.”
- I think I was 13 when Mom told me she and Dad were getting divorced (which didn’t especially bother me – they had nothing in common and really should never have been together), and asked me who I wanted to live with. That was not even a question for me: “You,” I told her. I think she got a little teary-eyed at that.
- Mom absolutely hated profanity; seriously, when I showed her Romero’s Dawn of the Dead, her response to one of the goriest and most ultraviolent films ever made was, “Oh, that language…” But she loved to quote Frank Booth from Blue Velvet: “Don’t you fuckin’ look at me!” She’d say and then giggle. I’m not sure why that line in particular tickled her so much.
- Even though she claimed to not have a great love of monster movies (she preferred psychological horror), I took her to see Alien in the theater and when it was over she took a deep breath and said, “Well, that was certainly a thriller.”
- Her favorite movie was Gone With the Wind, mainly because she was raised to be quiet and submissive (as were most women of her generation), so she admired Scarlett O’Hara’s outspokenness and determination. Our favorite comedy sketch of all time (although we also watched and loved Monty Python’s Flying Circus when it used to run on PBS) was Carol Burnett’s GWTW parody. Every Saturday night we watched The Mary Tyler Moore Show (which we adored because it was the first show to feature a competent single career woman who knew she was more efficient than all the men around her), MASH, The Bob Newhart Show, and The Carol Burnett Show. We’d often stay up for Saturday Night Live after.
- In high school, I started to notice other kids smoking. One day I came home from school and asked Mom why people smoked. She went into the kitchen, retrieved a pack of cigarettes she kept for guests to the house who might smoke, lit one up and handed it to me. I took one puff and gagged. Mom Mission Accomplished.
- I don’t remember this, of course, but she taught me to read when I was 3. What I do remember is her incredible patience a few years later, when I was so hungry for books that she took me to the library every day; the maximum number of books that could be checked out was six at a time, so every day I returned the previous day’s six and got six more. Once the librarian asked me if I was really reading them, and she picked one at random to ask me about it. I…ummm…recited every word by memory. She never asked again.
- Mom and I also loved Dark Shadows, which came on every day at 3:30. We lived for a year in Novato (in Northern California), and my school that got out at 3:10. If I rode my bike as fast as I could, I got home just at 3:30 and we’d sit mesmerized by the sinister antics of Barnabas and Angelique. If I was a few minutes late, Mom filled me on what I’d missed.
- When I was in high school, I loved both writing and drawing. I remember Mom and Dad (who were long divorced by that point) both coming to my high school graduation and having a playful argument over whether I’d be a writer (Mom) or an artist (Dad). I guess we know now who won that argument.