It was windy, chilly, and cloudy on Monday, April 15th, 2013—the day of Judy’s diagnostic appointment with Dr. Femsby. Standing at the kitchen sink facing the den, I watched Judy staring at the blank TV screen.
“Can I fry you some eggs and bacon?” I asked.
“No, I’m OK.”
“How about waffles? Toast?” I thought Judy could use pampering this morning.
“I’m not hungry.”
We left early for her neurology appointment. On the way to the doctor’s office, Judy sat staring straight ahead. I wanted to tell her, “It’ll be okay,” but thought better of it. I wasn’t sure how this day would end.
At the doctor’s office, I parked close to the front door and came around the car and opened Judy’s door. She sat still for a moment, head bowed, then she got out of the car.
When we checked in, the nurse escorted us to the examination room. Judy sat on the edge of the gurney as the nurse placed the blood pressure cuff around her arm; the band tightened, and Judy winced.
“The doctor will be with you shortly,” the nurse said on her way out of the room.
I sat in the chair against the back wall. Dr. Femsby entered, sat at the computer table, and swiveled his chair around to face Judy.
“Good morning,” he said.
Judy looked non-plussed at the doctor.
Dr. Femsby got right down to business scanning his tablet. “Your blood test indicates a deficiency in vitamins B-6 and B-12.” He looked up. “We can address this with vitamin supplements.” He hesitated as if waiting for Judy to respond.
Could a vitamin B deficiency cause Judy’s memory issues? I wondered.
The doctor turned back to his tablet. “Your MRI shows lack of blood flow to the hippocampus. Your hippocampus is nonfunctional.”
Judy stared at the doctor. She knew what that meant. Over the years, she had many conversations with her sister, Susan, caregiver for both of their parents’ journey through Alzheimer’s.
The doctor continued, “The hippocampus controls short-term and long-term memory. Your hippocampus is all but non-functional,” he repeated, as if looking for a response from Judy. Dr. Femsby seemed to be more nervous imparting his news to Judy than she was at receiving it.
“The memory assessment test indicates mild cognitive impairment,” Femsby said. “You are well within the parameters of an Alzheimer’s diagnosis.”
Judy glanced at me. I wanted to say something to comfort her but knew that nothing I could say would soften the impact of that diagnosis.
Femsby picked up brochures from the table behind him and thrust them at me. “Here, you should read these,” he said.
I glanced at the brochures; they were all about Alzheimer’s.
I watched Judy’s expression as she absorbed this sentence. Her tight lips and firm jaw line cut a stoic image. Her expression showed understanding, but I could see that she wasn’t going to get all emotional about it. I resolved then and there that she wouldn’t be traveling this journey alone; I’d be there for her every step of the way.
Doctor Femsby’s next words surprised me.
“Some medications on the market today claim to cure or to slow the progress of this disease. Don’t believe them! No medications currently available act to cure Alzheimer’s or to slow its degenerative path. Today’s medications treat symptoms of the disease, not the disease itself. But these medications can make you more comfortable.”
Dr. Femsby handed me a small box marked Exelon beginner’s kit and a slip of paper.
“I’m prescribing Exelon. The kit,” he pointed to the box, “increases the dosage over a period of four weeks. Then you start with the full-strength prescription. It will make you feel better.”
He was speaking to Judy, but he handed the package to me. “If you develop side effects, call me and I’ll change the prescription.”
Dr. Femsby stood up. “Let’s schedule your follow-on appointment,” he said. “It’s best to continue these visits. I had a patient who didn’t come to his follow up visits for two years. When he did return, his condition had significantly worsened.”
Those words confused me. Dr. Femsby was implying that if Judy didn’t return, her disease could progress faster than if she did. But he had just told us that no available medication treated the disease or slowed its progress. If that were true, follow-up visits with him or anyone else would make no difference in the speed of the disease’s advance. Future visits must be to monitor the advance of the disease and to adjust her medications to the accelerating symptoms.
I took Judy’s arm as we followed Dr. Femsby to the scheduling desk. He wanted to keep Judy as his patient.
On the way home, Judy was so quiet sitting beside me that I asked, “Are you OK?”
Too quickly she said, “I’m fine.”
“We’ll do whatever it takes to get you through this,” I said. It didn’t occur to me at the time that getting her through this meant losing her.
Judy sat there as if coming to terms with the emotional turmoil I knew swirled in her head. Over the years, she had talked to her sister, Susan, and I’m sure the topic of caring for their parents came up. But this was different. This was her own diagnosis.
Some people reacted to an Alzheimer’s diagnosis with total disbelief, even challenging the doctor’s opinion. One man I read about argued with the doctor about his diagnosis and became belligerent when his wife and daughter suggested that the doctor might be correct. The man wouldn’t say the word “Alzheimer’s.” He referred to it as “that disease” or “that thing.”
What I saw in Judy’s reaction was benign acceptance.
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When we got home, Judy dropped her jacket on the back of the wrap-around sofa in the den and walked past my chair to her recliner.
“My parents lived a normal life for years after they were diagnosed,” she said.
“We won’t change a thing until we’re forced to,” I said as I sat in my chair across from her. “We’ll go out to dinner on Friday evenings; we’ll visit the grandkids; we’ll take trips.”
“Mom and Daddy both spent their last days in a nursing home,” Judy said, her bleary eyes on me. “I don’t want to spend my last days in assisted living or a nursing home. I want to stay here at home with you.”
Her tone of voice caused an ache inside. I recalled her parents’ last days. “When your dad started leaving burners on with grease cooking on the stove, it wasn’t safe for him to be left alone at home,” I said. “But your mom had years to work before she could retire, so a nursing home was the best choice. Your mom lived alone when she was diagnosed. As her condition worsened, no one was there to care for her, so a nursing home was again the answer. We don’t face either of those situations.”
I knelt beside Judy’s chair and put my arm around her shoulder. “Sweetheart,” I said. “I’ll take care of you at home. You’ll not be going to any nursing home.”
I was in excellent health and saw no problem meeting this commitment.
I felt the soft squeeze of her hand on mine. “Thank you, Paul.”
She leaned back in her chair and looked me in the eye. “I’m going to call our kids and our friends. I don’t want people thinking I’m stupid because I forget things.”
“Honey, our family and friends would never think you were stupid.”
I recalled a visit with her mother in a nursing home when Judy talked non-stop providing updates on each of our kids, and what we had been involved in; her mother smiled the whole time Judy was speaking but she uttered not a word.
Later that day, Susan and a younger sister visited their mom. The first thing she told them when they entered her room was, “Guess who came to see me this morning? Judy and Paul.”
Judy and I had created a living trust some years earlier with a medical directive and a power of attorney to cover different situations that might develop for either one of us in our last days. This was excellent foresight; we had already faced most of the possible financial situations that could arise on this journey.