Our family was not prepared for the “cyclical” aspect of my mom’s vascular dementia.
When she moved in over a year ago, we were uninitiated with the cause and progression of her disease. Heck, we were not even really aware that she HAD dementia.
Mom had always been a bit insecure about her decision-making, and I always had a part in filling out paperwork, etc. But shortly after moving in with us, when she began asking the same questions over and over again and looking to me or my husband John to help prod her along with all daily tasks, we realized that things had gone very much awry for her.
This took some adjusting on all our parts. The outings I had pictured for the two of us, short trips to the mall or the diner, really weren’t on Mom’s to-do list. She made it clear that she was happiest at home, and would travel only to visit relatives or if the rest of our small family was heading out to dinner and we pressed her to join us.
And my husband John and my young adult children were used to the “take charge” Josephine, not the somewhat sad and confused lady who now spent most of her day either watching TV or in bed.
Then one day a few months after she had moved in it appeared that a miracle had occurred. Mom seemed to have “come back” to us. She got up early for breakfast and was sitting at the table fully dressed and ready when I came in from gardening. She was reading the Daily News, to my surprise. A short while later, she asked where her crochet bag was, since she wanted to continue working on a project. (Sadly, I had thrown it away because just a few weeks earlier she had insisted that she could not remember how to crochet and had no interest in re-learning). Since I am such a trustworthy and honest person, of course I lied and told her that I could not find the crochet bag but would continue to look. Meanwhile I distracted her with time spent sitting on the porch and talking about the old days, then a nice dinner during which we all had a great conversation. After dinner, while Mom and John watched some sitcoms, you know what I did. I raced over to AC Moore and bought a six skeins of yarn and some crochet needles. I was determined to start a project that she could continue. “Wow,” I remember thinking as I weighed color options for the yarn. “She’s actually BACK!”
The next day I was surprised when Mom slept in again instead of getting up earlier for breakfast. Well, at least I had some time to crochet a square that would be the basis for one of the small blankets she once enjoyed making. At 11:30, her usual waking time, I had to rouse her from her sleep. “What time is it?” she asked. “It’s late, mom — 11:30.” “Oh,” she said. “Am I going to eat breakfast or dinner now?” Undeterred, I brought up the subject of crocheting after breakfast when she was sitting on the sofa watching Family Feud. “Do I crochet?” she asked. “You used to,” I said. “I started a project, and thought you could finish it.” “Nah,” she said. “I really don’t want to.” And with that she closed her eyes for a catnap.
A similar forward and back scenario happened at least twice more before a did a bit of research online. This one step forward, two steps back conundrum was actually a vascular dementia THING. I was so relieved to learn that we were not the only ones facing this unnerving situation that I almost cried. It was heartrending, for sure. But it was part of the disease that was now part of Mom. We had to accept it.
And so two weeks ago when I heard my mother heading down the stairs for breakfast fully dressed at 10 a.m., I was prepared for the rise and the inevitable fall. She did not disappoint, verbally sparring lightly with me over breakfast and once again reading the Daily News and asking me pointed questions about some of the stories. “Is that Donald Trump’s real hair?” she asked, and we laughed.
She had an appointment with the cardiologist later that day, and she charmed the lovely doctor’s assistant and complimented her hairstyle. When the young lady completed the EKG and left to fetch the doctor, my mother commented on how wonderful it was that this nice girl had completed all of her schooling and had a good career.
Later that day I reminded Mom that she was getting a haircut the next day. “Hmm,” she said. “Do you think Paul can give me a perm?”
“Aw Ma, a perm will take hours,” I blurted out, immediately regretting it. “You’re right,” she said. “Forget it.”
“No no no,” I said, totally backtracking. “Let me call Paul — if he has time to give you a perm, you can get one.”
“I don’t know,” Mom replied. “He might feel bad if he can’t do it.”
“He won’t felt bad,” I insisted, practically sprinting toward the phone. “He’ll be honest.”
“If he has time to give you a perm, you should totally get one!”
For some reason I turned around to sort of gauge what my mom’s thinking was, and I could see the wheels spinning.
“What is it, what’s wrong?” I demanded.
She took a second or two to answer me.
” I don’t really want a perm,” she admitted. “What I want is a short haircut, and I know that you don’t want me to have one.” And she looked sad and beaten down.
Wait, what! My friend Jamie Turner would call this an AHA moment. I thought that I might never have one, and here it was staring me in the face.
So here is the truth that hit me hard. My mother had basically placed her decision-making about her daily routine in my hands. And I took that to mean that she needed me to make ALL of her decisions. Even ones about her hair, which I had decided needed to be grown longer to better flatter the shape of her face. And what she had ended up with under my guidance was an unkempt bob hairdo that was flat on top and wavy at the ends — what is known as the ‘pyramid” look. It had to go.
So I told Mom that she should and could get a short haircut, and she was happy. So happy and relaxed, in fact, that she allowed me to subject her to one of my favorite movies — “Airplane.” (And it was all fun and games and a lot of laughs until I forgot to fast-forward through one crucial scene — “Why was that woman in bed with a horse?” Mom demanded.)
The next day, the day of the haircut, Mom slept late again. It was business as usual, back to the down cycle, with a bit of backsliding. But this time I was prepared for it.
Although the shop was busy and I managed to arrive ten minutes late to her appointment, our wonderful hair stylist Paul made sure that mom received the most beautiful short haircut on the planet. The three of us were flipping through magazines in search of the perfect style when I spotted a photo of the actress Ginnifer Goodwin with a short pixie cut. “That’s adorable,” I said. “Do you think it would work on mom?”
“Of course it would,” Paul said. “Ginnifer Goodwin has the exact same face shape as your mom.”
“She even looks like your mom,” Tom added. Which, incredibly, she really does.
Mom ended up happy that day. And so did I. Happy and proud. Happy that I had let mom take charge of her hair again, happy once again for the kindness always shown by those surrounding us, and proud that she is just so stinking beautiful even at the age of 88.
Back and forth. Up and down. Lessons learned.
It’s part of aging and part of dementia, and — let’s face it — part of life.