My Mom is 82 years old and has developed dementia. I don’t know if it’s Alzheimers or some other form. I’m not sure it really matters. Dementia in all its forms is a devastating condition for both those who suffer from it and those who love them.
My Mom’s condition came on suddenly. Or maybe not as suddenly as we think. Perhaps she had clues that things were going astray inside her brain, but those around her never saw it coming. We were unaware of Mom’s failing memory until it got so bad that she could no longer hide it from us. That is one of the most surprising things I’ve learned — just how easy it is for a person with dementia to hide their condition from others. No one wants to face the prospect that they might literally be “losing their mind” and they don’t want others around them to know it. Once we became aware of Mom’s problem, we could watch its progress. It has progressed rapidly. But even now, Mom is still capable of disguising her failing memory. We have to look and listen for every tiny clue to get even a hint of what might she may sometimes be thinking.
I had little idea of what to expect from Mom’s condition. I still don’t. Most days I feel like I am hanging on by the seat of my pants. I never know if I’m doing the right things for her. Do I attempt to help her with a chore or allow her what little independence she has left to do it on her own? She has become quite vocal that she is “perfectly capable” of doing things by herself! She isn’t, of course. It’s a daily guessing game that I play. Toss a coin. Heads I do this. Tails I do that.
Mom’s condition is especially frightening for family members because it is obviously hereditary. My mother’s mother developed dementia before she died as did Mom’s brother, at least one first cousin, and some other family members. DNA testing tells me that I don’t have those genes, but that doesn’t stop the fear from lurking in the dark places and popping into the front of my mind every now and then. “What is wrong with me? How could I have forgotten that appointment?” “Why can’t I remember where I put the car keys?” Those kinds of common memory lapses that we all occasionally suffer can stand out like red flags and cause us to question our own competence when we are watching the memory of someone we love slip away. Watching Mom, we can’t help but wonder if we might someday be in her shoes.
I have wondered what my Mom would think about me sharing her personal struggles in this public format. She is a private person which is why I don’t reveal her name or other personal details. She is just my anonymous, “Mom.” She is my mom, but she could be your mom too. She could be your grandma, your aunt, your sister, your friend. Mom is a quiet person and a shy one, but she is also kind-hearted and giving. The Mom I remember spent years designing, cutting and hand stitching thousands of beautiful quilts in her spare time, only to pack them in boxes and mail them off to those in need in war-torn countries or places suffering from some natural disaster around the globe. If she knew that the stories of her struggles today might make it easier for someone else’s daughter to care for a struggling mother tomorrow, Mom would be all for it.
Mom is a private person, but even private people can get lonely. Mom is lonely. All of the family and close friends she grew up with are gone now. Even the neighbor she used to visit daily recently died. Mom tells me over and over again how stunned she is that she should be the one left standing. It wasn’t supposed to be this way, she tells me. She was the sickly kid. The one that wasn’t expected to grow and thrive. Now here she is, the last family matriarch.
I visit nearly every day, but she doesn’t consider me “company” although she is always happy to see me come. My daughter however, gets the glory for her weekly visits! Mom will tell me over and over again “how nice it was to have had company!” each time Amy stops in. Mom never remembers Amy’s name. Nor do I think she understands that Amy is my daughter (or even, at times, that I am her daugther). She knows and describes Amy as “the mother of Caleb and Michael” her two great grandsons whose names she never forgets. How odd it is that she would remember that! I hope Mom will continue to view Amy and her other grand and great grandchildren this way though. With all of her childhood family now gone, every familiar voice from her past is precious and even the occasional new face gets a welcoming invite to “sit down and stay awhile!”
If you know an elderly person, be it a relative or a neighbor or even the old lady who sits behind you in church, please don’t assume that others are taking care of them. Stop and take a moment to write them a letter or send a card. Pick up a phone. Drop in on them once in a while. Maybe you are afraid they won’t remember you. Don’t be. They will remember. My Mom remembers everyone from her past and she is always happy to share old memories. She is also happy to meet someone new. Ask the elderly about their kids. Ask about their childhood. Ask about the people you once had in common. They will gladly share their stories of your own parents and grandparents with you if they knew them. As the old John Prine ballad says, “Just say ‘hello.'” (If you don’t know the hauntingly beautiful John Prine song I am referring to, take a listen to it here.).
I visit my parents daily now. I sometimes get there early, before Dad, a late-sleeper, is out of bed so that I can sit alone with Mom for a while. Mom pours her coffee, and we sit quietly just like we did when I was a small child — an only child at the time — and we were alone in the house after Dad had gone to work. Mom was never a “morning person” and she used to keep me lying quietly on the couch, giving herself a few extra moments of rest time, by reciting my favorite “Little Boy Blue Come Blow Your Horn” and “Baa Baa Black Sheep.” She would sing, “You are my Sunshine” until the sun came up and our day began. Today, I ask about her childhood and the people of her past. Those are people and places that she remembers without fail and old stories that she delights in retelling. I’m not sure she really knows who I am or remembers that I am her daughter. But as she relives her memories and repeats old tales, I feel lucky that, if only for a fleeting moment or two, I can still find my Mom.
Home at the WhackyShack 