Memory Loss Sucks! Caring for Mom: Day 18 – One Alzheimer’s Caregiver’s Experience
18 days ago I took over caring for my 82-year old mother who is challenged by stiff, achy joints, severely limited vision and an unreliable memory.
She’s not always sure where she is, what year it is, or that the conversations on the TV aren’t actually happening in reality.
This is my place to process the experience.
Welcome to my world as a caregiver.
Every day starts with helping mom out of bed, and leading her, ever so slowly to the bathroom. She grimaces in pain and along the way I hear the same statements:
“Boy my knees hurt. This is the first time I’ve felt so much pain! Why are my knees so stiff?”
She has progressively gotten more stiff and her left leg is slightly contracted at the knee from an old injury that was never properly addressed. When mom lived alone, about 8 years ago, she apparently fell or knocked her knee and never told anyone.
Once we finish the morning bathroom visit we walk to the breakfast table. Along the way I am asked:
“Why is it so dark? Can’t you turn on the lights? I can’t see a thing!”
Mom has glaucoma and is mostly blind in her left eye, and nearly blind in the right. If there are bright lights she can make out objects, colors and movement with her peripheral vision.
She swears that she can see, but the lights are simply not bright enough. No matter how many we turn on, she insists we are being unkind to her.
Once she has had breakfast, while complaining that she can barely see her eggs, she lightens up. And then she’ll admit, slightly defeated:
“Well, I did inherit granddad’s bad eyes.
I don’t know why he gave his problem to me. I’m blind as a bat.”
It’s tough hearing her – every day! – come to the same conclusion that she is worn, ragged and no longer fit and fine as she used to be.
No New Memories
Part of the reason I wanted to take over caring for mom at this point, was to allow my daughter, who is 9-years old, the chance to hear some of Grandma’s tales from her childhood in British Guyana.
I also hoped that mom would at least take heart in knowing her granddaughter is lovingly and gently caring for her at this delicate time. (My daughter loves to style her Grandma’s wig and put on her makeup! 🙂 )
Sadly, mom doesn’t seem to have new memories sticking from moment to moment. She still thinks of my daughter as a very young girl she knew three years ago, when mom’s memory was a bit more intact.
Like the movies “50 First Dates” or “Groundhog Day” we hear the same phrases and questions – multiple times each day. So mom asks my daughter the same questions as if she is seeing her for the first time in a long time.
Sometimes the same question is asked – and answered – several times in one minute!
“Where am I?” she asks.
“You’re in Los Angeles, mom.”
She responds incredulously, “I am?! How on earth did I get here!?!?”
“We brought you here last week on an airplane, mom.”
In disbelief she retorts, “Impossible! I flew on an airplane?? I would have remembered that!”
Since we go through this several times a day, hour and minute(!) at first I gave mom the same answers. I hoped that with repetition she would remember that we are staying with friends in LA, getting her passport renewed and preparing for a trip to France.
But she doesn’t remember anything new. I realize that it’s sometimes better to not try to orient her to reality.
So now, my daughter and I have decided to be more playful with our responses. Using humor to mix things up sometimes we explain that it is dark because aliens landed and borrowed some of our electricity to power up their ship, and all of our lights now function at quarter capacity.
Mom chuckles. And at least, for a moment, she smiles.
Even the Good Stuff Doesn’t Stick!
For the last two weeks, we have splurged by doing some of the things mom always loved. We’ve taken her to nice dinners, gotten her new clothes, got her a new wig 🙂 and eaten ice cream nearly every other day!
As is often recommended by experts, we should offer people with memory loss familiar foods. Because Baskin & Robins was always a special treat for my mother while I was growing up, I decided to find one here in LA and take mom and my daughter. Since we don’t have B&R in France, it seemed like a special bonding experience.
It was a magical time! But not a memorable one. 🙁
One hour after we left the ice cream parlour, mom asked:
“Do you have any ice cream at home? I’d sure love some.”
“Mom, we just left Baskin & Robins and you had your favorite!
Two huge scoops, I might add!”
“No I didn’t! I would know. My belly is empty!” She huffs at me with frustration.
And so I sigh, slightly sad that our little outing has already been forgotten. It didn’t stick.
My daughter is sometimes disappointed that her grandma doesn’t always appreciate the efforts we make. I explain, as others have done, that because of the dementia her brain doesn’t register it, but grandma’s soul is here. And she will remember and appreciate our loving care always.
Somehow I hope that this is a good enough response.
May we create and savor our delicious experiences now,
If you are a caregiver and want free stress-relieving meditations and mindfulness resources, please check out my Stress Less Chill Kit at www.AndreaPennington.com/resilience