“We’re here for an 11:00 a.m. appointment,” I say to the receptionist as we check in at the Center for Senior Health and Memory Care. We’ve been referred by Mom’s primary care doctor after several months of concerning behavior.
We have had one situation in the fall, after she had traveled with my brother and his family to Virginia, in which she exhibited very odd behavior. My brother had noticed it during their ride home, but the following evening, while making dinner, as Hanna and I were in the kitchen helping and keeping company, she asked us three times in five minutes whether we wanted rice or pasta as a side dish. I finally stopped her and asked if she was okay. I explained to her that she had asked the question several times, took her blood pressure, gave her water, and sent her to bed, thinking perhaps she had overdone it during her time away. I had also scheduled an appointment with her doctor, who sent her for an MRI given her history of strokes. But the MRI came back clean, and after consulting her doctor, we took it as perhaps a sign that my mother had been overtired, had perhaps eaten too many salty foods (she was a very healthy eater and almost never ate fast food), and over the next few months, I kept a watchful eye over her.
There were many episodes of forgetfulness that I mostly chalked up to old age. She would forget having told us something, or that she had seen our daughter, Brittney’s, wedding dress, which was hanging in my closet. But there was nothing overly concerning until around Christmas, when she could not decide whether or not she wanted to visit with Jim and his family over the holiday, as she has always done. I kept reminding her that this was a tradition she had always loved, and that nothing had changed, but she was newly resistant to leaving home. In the end, she agreed to go, but was anxious and continued to waffle until the moment I dropped her off.
Then, during a weekend trip to an historic hotel with Michael, the girls and I, she kept calling me to tell me the heat wasn’t working, but each time I went to her room, I found that she had turned the thermostat as far down as she could; I would reset it to a normal temperature, and the room would heat back up, and then a few hours later, she would call again with the same scenario.
In January, Michael drove her out for a visit with Jim and Grace, and on the way out, she received a text from their son that she had forgotten to pay his monthly rent. According to Michael she began to panic, started pulling her purse apart as though she could somehow fix the problem then and there, and was in tears. She explained the situation to Michael, who tried to calm her down by suggesting that once she arrived at Jim’s, she could give him a check, could perhaps call the landlord in Virginia and make a credit card transfer, or even a bank transfer.
Mom finally did settle down for about five minutes, until she looked at her texts again, saw the text from my nephew, and, apparently having forgotten the entire episode already, began to panic again. This having never happened before, Michael was understandably shaken, but managed to calm her down – again. This same series of events occurred three more times until Michael pulled over, gently took her phone away from her, took her hand, told her everything would be okay, and then drove her to my brother and related what had happened.
When Michael related this incident to me, I scheduled an appointment with Mom’s primary care doctor, Cindy, who was a kind and caring physician who was always extra compassionate and patient with Mom. During a late January appointment, after testing Mom’s vitamin D level and ordering test for UTI, she administered a mini MOCA to check Mom’s mental function. It was a Friday, and I had my four month old granddaughter with me at the time. “I think you might want to get a further evaluation,” Cindy said, looking at me meaningfully, and I felt my stomach drop. I nodded my head, and later, at home, made the appointment.
A few days later, Mom came downstairs at dinner time quite upset. Grace had texted her that the rent check had not showed up as promised, and what was she to do? I hadn’t been privy to the new arrangement, but I immediately texted Grace that I would take care of it the next day, which was a Friday, my day off. I got up and went to Mom’s room to write a check to Grace; I found Mom sitting at her desk crying.
“What’s the matter, Mom?” I asked her.
“I don’t know what I’m supposed to do,” she said.
“About what?” I asked.
“About anything,” she replied. I have not often seen my mother cry, even when her father died, even when my father died.
I sat with that for a moment or two, and the penny dropped. I remembered someone saying to me, “when your mother dies, that’s when the rubber meets the road,” and I thought, “THIS is when the rubber meets the road.”
“Do you need help?” I asked.
“I need help,” she said.
So I helped.
And then, a week later, we were there, at the doctor’s office, checking in for our appointment with the gerontologist, who would, an hour and half later, after administering many tests and taking a full history, say to me the thing I knew she was going to say, that is, that my mother had dementia. She called it Alzheimer’s, though we would later receive a more accurate diagnosis – vascular dementia (the name was different, but the diagnosis largely interchangeable, as the two diseases are so similar). We went to have a few more tests, and then I took my mother to lunch.
Later that afternoon, Mom down for a nap, I texted Susan and Jim to tell them Mom had been diagnosed with Alzheimer’s. Susan called me immediately. We hadn’t talked for a long time; she was still angry with me about a fight we’d had over a year before, and even though we had made nice at Cait’s wedding that August, she was still pissed at me, and I was still pissed at her, but the minute she got my text, she called, and I cried, and I kept repeating, “I hope she doesn’t forget who I am.” My father never had. Susan was about as comforting as she could be, promised to help as much as she could, and told me I was going to have to ask for help even though she knew I never did that. I promised I would, and that was that.
I didn’t hear right away from my brother, who is not a texter, but when I did, he was sweet and sympathetic, and said all the right things. What struck me later, when I thought about it – and I’m not sure how to feel about this, even now – was that, for the first time in their lives, the reaction of both of my siblings was to be concerned about ME. Neither of them seemed to be all that sad about Mom, or how this was going to impact them, or her, and perhaps this was because they assumed I was going to be caring for her for the rest of her life, which meant that this really wasn’t going to have any real effect on them. But their concern for ME – that was surprising. Still is.
In the time it took for a doctor to put a name on my mother’s diagnosis, she changed forever.
She went from being someone who sometimes forgot things to someone who suddenly had no short term memory, who remembered nothing, who could not be left alone – for any period of time. She suddenly became restless, sitting down to do something, then stopping abruptly after a few moments, then moving to another activity, then doing something else.
She no longer wanted to eat. If food was put in front of her, she picked at it, yet she began to hoard food in her room. She would come to me to ask a question, leave, then come back, and ask the same question. This could go on for hours.
She did not understand why she could not drive any more. She would ask over and over again why she was not allowed to drive. She did not understand. It was unfair. How would she get anywhere? Who would do the shopping? How would Allie get to the barn?
Two weeks after her diagnosis, the world shut down.