by Mike Glenn
“Exactly,” I said. Then, I named the second man. “Now, he was known to drink a little bit and didn’t go to church as much as Mom would have liked, but Mom loved him. Why?”
“Because he was my friend.”
“Exactly. Mom isn’t hard to understand. She only has one rule: ‘Don’t mess with John.’”
If anyone ever doubted that, their questions were answered when Dad had his heart attack.
Early one morning at the end of 1988, my dad went to the doctor with a bad case of indigestion. As he described his symptoms, an alert nurse recognized my father was having a heart attack. He was ushered back into an examination room, and the doctor and his staff began to run a series of tests. Dad lost consciousness during the exam. He was rushed to the emergency room of Huntsville Hospital. His doctors and their teams worked for hours trying to stabilize him. When they finally did, it was determined my father would need major bypass surgery. He would end up having five bypasses. During the surgery, the doctor would send a member of his team out to talk to us. Dad was sicker than anyone had thought. The surgery was longer and more difficult than we had been told.
Mom found a new mission in life. She would take care of my dad. She would be his nurse, his counselor, his trainer, his nutritionist, and anything else he needed to make sure he lived as long and as well as he possibly could. They bought a lake house on the Tennessee River just outside of Scottsboro, and it became the center of our families’ lives. Mom made sure of it. Mom decorated the house so whoever came was comfortable. She would cook whatever her grandchildren wanted to eat. Every holiday was centered at the lake house, with everyone gathered around Big John’s (my dad) chair.
Mom watched Dad like a hawk. She monitored his salt intake, his calorie count, how much fat he had eaten, and the amount of sugar he had. She successfully removed all salt from his diet, to the point that my dad began to experience painful muscle cramps. When they tested his blood in the doctor’s office, the doctor told Dad he had no salt in his system. Mom reminded the doctor he had said for Dad to cut out salt. So, she cut out salt—completely.
That’s my mom. It’s all or nothing.
Eventually, caring for my dad like this began to take a toll on my mom’s health. She started suffering from headaches and acute vertigo. She brushed it off as the fatigue and stress of caring for my dad. As the symptoms worsened, she finally went to the doctor on her own. She was diagnosed with an acoustic neuroma, a benign tumor that grows on the balance nerve near where the hearing, balance, and facial nerves come together at the base of the brain. The result is usually deafness in the affected ear, loss of balance, and other symptoms as well.
A very invasive laser procedure was suggested to my mom. She would have had to endure several hours of surgery and several months of recovery. My mother never considered it. She wouldn’t leave my dad that long.
As Dad’s condition worsened, Mom did whatever she could do to keep my dad optimistic, hopeful, and eager to be alive. She willed him to stay alive. She watched his food, his exercise, and his social engagement. She would insist he stay engaged in his social life, buying him memberships in the Rotary Club and the Huntsville Quarterback Club. She made him get up and get dressed, and if need be, she’d put him in the car and would drive him around town to see their friends. Dad would often call me, and when I would ask him where he was, he would tell me he was walking behind “your mother in Walmart. You know your mother and Walmart.”
Because I knew how committed Mom was to Dad, I dismissed it when he told me he was worried about Mom. “Something’s wrong with your mama,” he would say. When I would ask him to explain what he was worried about, he would tell me she had forgotten to pay the house payment on time, or didn’t pay the utility bill, or she had forgotten something at one of the rental properties. And she would have forgotten, but in my mind, I was surprised she hadn’t forgotten more. Caring for Dad was a twenty-four-hour, seven-days-a-week job. I don’t know how she did it for as long as she did. If she forgot to pay a bill or two, that was to be expected. My mom was overloaded.
Dad did pretty well for a long time. He lived over twenty years after his first heart attack. I didn’t realize how significant that was until I talked to my father’s doctor at his funeral. According to the doctor, my dad was given five years after his first heart attack.
But you can only do so much. It was only a matter of time before my dad’s heart finally gave out. As my dad’s heart grew weaker, there were monthly trips to the hospital for stays of several days at a time. He broke his hip and had to have surgery. Of course, this meant an extended rehab. My mom was determined to exhaust every avenue she could. Dad was sent to a hospital in Nashville to see if he was a candidate for special treatment. Everything short of a heart transplant was considered. Finally, having exhausted every avenue of treatment, my dad was sent home to live out his time.
Mom cared for him around the clock. My mom ended up sleeping on the couch for two years because Dad was so restless at night. How she endured it, I’ll never know. She was tired. She was overwhelmed. She was grieving the inevitable. And yes, she forgot some things. Any woman who was going through that would have a lot of grace from me if she forgot a few things.
Dad kept insisting, “Something’s wrong with Barbara.” I should have listened to him. If anyone knew her, it would have been him.
The phone rang a little after four in the morning. We had been expecting the call. My father was dying of congestive heart failure, and the doctors had told us we were running out of time. We thought we had a few days. We only had a few hours. My wife, Jeannie, and I were on the road in a few minutes and got to Huntsville way too quickly to have driven a safe speed. We got to be with my dad during his last few hours. We sang with Dad. We prayed with him. We told him how much we loved him, and how proud we were he was our dad.
At 2:30 in the afternoon, my dad passed away. “Lord, have mercy on me,” he whispered, and he turned his head to the side and died. I don’t want to be overly dramatic, but a part of my mom died with him.
In the aftermath of my father’s death, I began to see what my father had been talking about.
My first clue about what I was beginning to deal with was when Daddy’s headstone was delivered. We had ordered his headstone a few weeks before, and now it was being delivered. For the workmen to set the stone on the grave, you had to be there and pay off the balance owed on the work. If you weren’t there or if you couldn’t pay, they wouldn’t take the headstone off the truck. Mom had called me and told me they were going to deliver the headstone the next morning.
I went down the next morning and took Mom out to breakfast. Then, we met the truck and the workers delivering the headstone. They handed me the bill, and I took it over to Mom. She got out her checkbook and wiped her hands over the page as if she was trying to straighten the pages. She put her hand over her mouth and started to cry.
“Mom, what’s wrong?”
“I just miss your daddy so much. I just don’t know what to do.”
I didn’t know if she meant she didn’t know what to do in that moment, or if her grief had frozen her leaving her unable to do anything at all. Then, she looked at me, and I’ll never forget the look in her eyes. She was lost. She didn’t know what to do next. She was drowning.
Coffee with Mom: “I didn’t think you’d ever get here. Refill my coffee before you sit down like a good boy.”
I don’t know if I can get you to understand this, but my mom never asked me for help—ever. Mom never admitted that things were beyond her control. There was never a situation when my mom didn’t know what to do next. My mom ALWAYS knew what to do next.
But she didn’t know this time. She was confused. She panicked. For a quick moment, she didn’t know where she was or what she was supposed to do.
“Mom, let me take care of it and we’ll figure it out later.” So, I paid for the headstone, and we went
home. She settled down, and we had a pretty good day.
But I should have listened to Dad. Something was wrong with Mom. I thought it was just her grief, but it wasn’t. Something was wrong, and it wasn’t going to get better.
Chapter 4
Something’s Wrong with Mom
Coffee with Mom: “Alzheimer’s? Who said I have Alzheimer’s? Whatever doctor told you that is an idiot.”
The neurosurgeon walked into the examination room where Mom, Jeannie, and I were waiting. He flipped on the light box hanging on the wall to reveal an MRI of a human brain. It was Mom’s brain. A normal brain scan looks like a halved melon with two dark kidney-shaped areas in the center; one side exactly like the other.
My mom’s MRI was scattered with white splotches.
“The neuroma isn’t your mother’s only problem,” the doctor said.
“What do you mean?”
“See the scan,” he said. “In a healthy brain, there should be two dark areas in the center of the scan. Your mom’s brain scan is solid white. This isn’t what we’d expect for someone of your mom’s age.”
“What does that mean?”
“I couldn’t really tell you without more tests, but most of the time when we see scans like this, we’re dealing with some type of vascular dementia. That means your mom’s brain has been clogged by tiny little strokes from high blood pressure, diet, stress.”
“Alzheimer’s?”
“Probably some of both—Alzheimer’s and vascular dementia.”
My mom broke in, “Do I have Alzheimer’s? Who said I have Alzheimer’s?”
“No one, Mom. The doctor is saying we have to run more tests.” I turned to the doctor, “What’s vascular dementia?”
“The easiest way to explain it to you is your mom has had hundreds of microscopic strokes throughout her brain. We can try medication to try and limit the progression of the disease, but most of the time, an illness like this is progressive despite treatment.”
“What does that mean?”
“It means after we take care of the neuroma, you’re going to have some decisions to make.”
“What kind of decisions?” my mom asked. “Why do y’all keep talking about me like I’m not here? I’m right here, and there’s nothing wrong with my brain. Huntsville has great doctors. I’ll be just fine being taken care of there.”
“No, Mom, we’ll need to do all of your tests and procedures here. Your records and doctors are here now. It’ll be easier if we stay in the Vanderbilt medical system. Looks like you’re going to be here a while.”
“I’m not moving up here. You can just forget that right now.”
“I know. Let’s just see what the doctors say.” The other doctors had a lot to say. There was a psychiatrist, a neuropsychiatrist, and I’m sure I’m leaving someone out.
I lied. I don’t know if it was the first time I lied to my mom, but it was the first time I lied and didn’t feel guilty about it.
I would get used to lying to my mom. A friend of mine calls this “therapeutic lying.” Sometimes, when you’re dealing with a dementia patient, lying is the best option you have. It’s the only way to get through the moment you’re in.
I knew Mom wasn’t going home. She was going to have to move. I didn’t know how I was going to get her to move, but I was going to have to come up with something. There was something wrong with Mom, and the MRI on the wall wasn’t going to let me forget it. What we had suspected—that something was wrong with Mom—was now confirmed in black and white. We had to deal with the acoustic neuroma first, and then? We didn’t really know. Nobody did. We just knew we had some decisions to make about Mom’s life, and I, not Mom, would make them.
My mom had been diagnosed with an acoustic neuroma before my dad died. As I understand it, an acoustic neuroma is a tumor that grows on the balance nerve inside the skull. Because the tumor grows on the nerve where the facial, auditory, and balance nerves all run together, the symptoms can be confusing and frustrate an early diagnosis. The first symptoms are usually vertigo and headaches. This is treated with medicine and rest. My mom tried that, and of course, this treatment didn’t work. There is also a loss of balance, and finally, the hearing will be lost in the affected ear. Mom had been experiencing most of, if not all, these symptoms. They were not only growing in their intensity, but also their frequency. Mom never mentioned any of her symptoms or growing discomfort as long as my father was alive. I don’t know how, but she willed herself through it. Her last MRI had shown the neuroma had grown and was pushing against everything else in that part of her brain.
With my father having died the previous April, we now had time to deal with Mom’s situation. Convincing her to come to Nashville for her treatment and recovery wasn’t too hard. After several tests in January, we discovered the neuroma was blocking the circulation of fluid through the brain. She had a shunt inserted to drain fluid from her brain, and after that, started radiation treatments designed to shrink the tumor. These procedures were rather minor and routine.
Her surgery to insert the shunt was scheduled for February. We planned for her to stay with us while she healed from surgery through the completion of the radiation treatments. How hard could that be?
Let’s just say I asked that when I was still very naïve in the process. I was assuming we’d be dealing with my mom, but we weren’t. We were part of the treatment team of a patient. This was the moment when I began to learn that every decision I made in my life would be made with Mom in mind. Want to travel? How quickly could we get back if something happened to Mom? Want to go out to dinner with friends? Okay, but I couldn’t stay out late. I had to have coffee with Mom. Want to have a day off? Not likely. We’d probably have to take Mom to the doctor.
Normally, keeping Mom wouldn’t be a problem, but we didn’t have “normal” anymore. When you’re engaging an Alzheimer’s patient no one has “officially diagnosed” yet, it can be explosive. The MRI was only one indicator. There were more tests—a lot of them—and we would go through that process in due time, but right now, we knew, but we didn’t KNOW.
While we knew something was wrong with Mom, we still thought we were within the assumed ranges of “normal.” We weren’t, and without warning, we found ourselves living through daily episodes of The Twilight Zone. Little things became big things, such as when we took her to the hospital for a series of tests to prepare for her surgery. She wouldn’t allow them to take an MRI. Why not, Mom?
The MRI tube at the hospital was too small. The platform on which she had to lie was too hard and hurt her back. Besides, no one else had ever wanted to do an MRI, why did we want her to have an MRI now? What were we trying to do to her? Why couldn’t she go home and have an MRI done in Huntsville? She didn’t trust these Vanderbilt doctors. We would get her through it, but just barely. Jeannie and I would be exhausted when we got home from wrestling with Mom all day long. Wrestling with Mom would become a daily occurrence.
We knew one of the symptoms of a neuroma was incontinence. We knew Mom was using pads for protection. What we didn’t know is that she wasn’t throwing them away. Because she was embarrassed, she hid the used pads. We didn’t figure this out until we noticed the smell in her room.
Then, the accusations began. Jeannie had stolen her stuff. Everything in our house, according to Mom, had once belonged to her. We had stolen her silver, her plates, her utensils, her sheets and blankets. Even the pictures I had of her and Dad—they were hers—we had just stolen them. We had stolen everything from her, and if we thought she was just going to stand by and take this, we were sadly mistaken. She’d call her lawyer and put us all in jail.
Did you know paranoia is one of the symptoms of Alzheimer’s? I know it now. Just before she moved to Nashville, she had a new security system installed in her home. She had the security company install over ninety sensors in her house, including sensors on t
he second-floor windows. How did she expect someone to break into her house on the second floor?
I was ever the optimist and the last one who would believe something like this could ever happen to my mom. She was the strongest person I had ever known, and I couldn’t get it through my head she was going down like this. I tried to reason with her about the security system, but she wouldn’t listen. She never answered me. She just kept telling me how the neighborhood had changed. There were teenagers walking up and down the street (she lived two blocks from a school). Somebody, somewhere had gotten robbed—and I guess given the entire population of the United States, that was probably true.
Her declining condition would make our trips to the doctor even more exciting. The great thing about living in Nashville is you have access to some of the greatest medical care in the world. The bad thing about living in Nashville is you have access to some of the most respected doctors in the world, and you can’t make a decision without seeing at least six doctors.
Mom was no different. We had visits with the Chief of Neurosurgery, psychiatrists, psychologists, nurse practitioners, therapists, and social workers. Every appointment we had and every expert we saw would give us one more answer, one more part of the puzzle, and create a whole new wave of paranoia.
Mom’s medical file grew quickly to several inches thick.
The doctor had been right. The acoustic neuroma wasn’t a problem. Her shunt was implanted, and her symptoms improved almost immediately. She regained her balance and rarely suffered any bouts of vertigo. She had to be at Vanderbilt early in the morning for her radiation treatment. Fortunately, several of the doctors were members of our church and made sure Mom got VIP treatment. The radiation did its work and over the next few months, the neuroma gradually shrunk and faded away.
Church members signed up to take her to her treatments. They would meet us at the church, go to her treatment, and then go out shopping, to breakfast, or sightseeing. Mom was treated like a queen. Those who took her to her treatments would come back to my office laughing at some story Mom had told them. They always wanted to find out if the stories she had been telling them were true.
