A month or so after Mike’s help with Matt and Leesa’s move to Walla Walla, with strong encouragement from both Matt and Sharon, Mike agreed to see Dr. Carlson, our primary care provider, for a complete evaluation. I made the appointment and, with his permission, went with him.
Mike told Dr. Carlson he didn’t think there was anything wrong with him; he’d just come because the kids and I wanted him to. To begin with, Dr. Carlson asked Mike a series of questions. Was he having trouble keeping track of dates? No, he kept everything in his datebook. Trouble organizing things? No, she should see his sock drawer. Did he snore? “Marilyn says I do, but I don’t think so.” Was he ever aware of irregular breathing coupled with snoring? Never. Did he ever become lost when he was away from home? No. How was the therapy going with Dr. Bertoli? Great! He loved her! Did he think it was helping with the depression? Yes, she was very helpful.
Then it was my turn. I mentioned the time he left a movie in El Dorado Hills and got all the way to Pollock Pines, 40 miles from home, before he realized he’d been going in the wrong direction. I told of the strange incident at Sharon’s birthday when Mike insisted he’d been living in Tampa at the time of her high school graduation, rather than having lived with her, as her dad, from the time she was 9 years old. That strange misperception had been the catalyst for having him checked out. I said he often snored, snorted, sometimes gasped for air in his sleep. He missed appointments. Some bills he paid twice, others he left unpaid. He nearly constantly reported that he was depressed, or feeling discouraged. He often complained of feeling unwell, and of headaches, nothing he’d ever been prone to in the past. Unless he had specific plans for a day, he often went back to bed around 10 in the morning, something that would have been highly unusual even just a year or so earlier. He sometimes said bed was the only place he felt safe.
Dr. Carlson ordered a number of evaluations—a neuropsychological examination, an MRI, a sleep apnea assessment at a local sleep clinic, the usual lab tests. The neuropsychological exam was set for August 18, 2008. Unsure whether or not Mike could find the office, I drove him to that appointment. When we pulled into the parking lot, Mike said he wasn’t going in. He didn’t want an MRI. There was nothing wrong with his brain.
“This isn’t for an MRI,” I told him. “That’s not for another two weeks. This is the neuropsychologist. Remember? Dr. Carlson set it up. He’s a psychologist who’ll do an evaluation, then get it to Dr. Carlson.”
“I’m not going!” he said.
“Let’s just check it out,” I said, getting out of the car.
Mike sat rigid in the passenger seat. I walked to his side of the car and opened the door.
“Let’s just go meet this person. We have an appointment.”
Mike reluctantly followed me into the office. Dr. Parker came to the lobby to greet us just moments after we sat down. He said he’d like to see Mike first, then, if we agreed, he’d like to talk with the two of us together near the end of the session. We both said that was fine. Mike fell back into his sociable default mode and cheerfully followed Dr. Parker to the examining room.
I browsed through an issue of Psychology Today, pausing briefly at an article on the seeming miraculous powers of blueberries to fight the ravages of time in both brain and body. I made a mental note to add blueberries to my shopping list—wild, organic blueberries. A short article in a months-old Time magazine left me with a sliver of hope that we might soon have a bright, articulate, reasonable person in the White House.
After half an hour or so, Dr. Parker called me back to his office. He asked a few basic questions about my life and history, then asked about my specific concerns for Mike. I kept it short, not wanting to bombard Mike with a long list of all that was going wrong. He was defensive enough as it was. I mentioned Mike’s growing difficulties in keeping track of appointments, his inability to respond to email without help, and his recent problems with using the ATM.
Dr. Parker advised that Mike come in for a series of three sessions for the stated purposes of ruling out the possibilities of dementia, substance induced memory deficits, and/or AD/HD (attention deficit/hyperactivity disorder).
“Sound okay?” Dr. Parker asked.
“Sure,” Mike said, smiling.
When we got to the car Mike said, “I’m not going back there!”
“Really?”
“It’s just a wild goose chase. There’s nothing wrong with my brain!”
“You seemed to like him.”
“He wanted to play cards!” Mike said angrily. “I was raised Southern Baptist. We weren’t allowed to play cards!”
As part of that first day’s evaluation, Dr. Parker had apparently used a deck of common playing cards to set up a game of concentration. It was puzzling to me that Mike, who had run fast and far from the Southern Baptist fundamentalism he’d grown up with, would be offended by a deck of cards. But he was definitely offended. I turned the conversation to one of the few easy topics still in our repertoire—dinner.
Later that evening, Matt called Mike to see how the appointment had gone.
“He just wanted to play cards! It’s a wild goose chase!”
Playing cards became the theme whenever he spoke of those sessions. I sat in on parts of each session and saw that Mike’s social skills made him appear to be more competent than many of his everyday actions would indicate. The stories he told sounded credible. He mentioned to Dr. Parker that he would get a song stuck in his head, and he’d have to get up in the middle of the night, go downstairs and play it on the piano to get rid of it. I didn’t doubt that he would get a song stuck in his head—doesn’t everyone? But he never once got up in the middle of the night and went downstairs to play the piano. Still, it seemed petty and disrespectful to sit in that office and contradict the details for much of what Mike was saying. And any disagreement of fact raised his hackles. So unless it was a crucial piece of information—say, what meds he was on, or how much exercise was he getting—I let a lot slide by. As to the story about getting up out of bed and going downstairs to play the piano and other equally untrue but harmless stories that crept into Mike’s conversations, I later learned there was a name for such behavior in the dementia nomenclature—confabulations—and that they were a symptom of certain aspects of dementia. But that knowledge was yet to come, along with so many other pieces of disheartening information.
After three sessions, Mike and I met with Dr. Parker to go over the results of various tests and talk about his evaluations. He said that because Mike was right-brain creative, and because his scored profile was so odd, it was difficult to achieve a definite diagnosis. Although the combined tests generally showed that there was some cognitive impairment, his memory loss did not fit a pre-Alzheimer’s pattern. That was a huge relief to me! I would not have been so relieved had I known then what lay ahead.
On the basic tests Mike scored well for general information and jigsaw puzzle, low for math and very low in searching visually for images. The last score surprised me because Mike’s absorption of visual information was always so much greater than mine. I remember a conversation driving home from a party many years ago that went something like this:
“Did you talk with the woman just here from Minnesota?”
“The blond, in the green dress?”
“She has a daughter at Alhambra High School.”
“Big dangly earrings?”
“She wants to get her California Teaching Credential.”
“Fake pearls?”
An extreme but not terribly rare example that emphasized the differences in the dominant senses through which we perceived the world. I took in the words but likely couldn’t say what color the room was in which they were spoken. Mike could give every detail of appearances though not so much of conversation. The whole thing amused us, and we often relied on one another to fill in the blanks.
When I expressed my surprise that Mike scored low in the visual image category, Dr. Parker said that could be an indicator of possible ADD. Low math skills also pointed to the possibility of ADD as a child.
A few days after our visit to Dr. Parker, when I was in Dr. Bertoli ’s lobby, waiting for Mike to finish his weekly therapy session, I came upon an attention-grabbing article in Science magazine. It was by Dr. Duane Graveline, a physician and former astronaut, and linked Lipitor and memory loss—Lipitor, which Mike had been taking for decades to combat his genetic propensity toward very high cholesterol levels. Dr. Graveline relayed a compelling story of temporarily losing much of his short-term memory after being given Lipitor to lower his cholesterol. That problem ceased shortly after he stopped taking the drug. A year later, because of ongoing elevated cholesterol readings, he agreed to resume the drug at half-dose. Soon after that, he again lost short-term memory and was diagnosed with Transient Global Amnesia, a condition that erases recall of recent events and that put Dr. Graveline back to his 13-year-old self. He didn’t recognize his wife and found it amusing that anyone would think he was married with children. He wrote of his slow recovery, a combination of avoiding statins and taking various supplements, and of his ongoing research regarding statin drugs and their myriad of side effects, including some that were extremely damaging to the brain.
When Dr. Bertoli walked out with Mike, I told them of what I’d just read and asked to borrow the magazine. Back home, I rushed to my computer and did what any concerned wife would do: I searched the net for links to statins and cognitive function, finding report after report of similar experiences. Mike didn’t seem to absorb much of the information I tried to pass on to him, but he did say he’d be willing to stop taking Lipitor. When Dr. Carlson returned my call later that afternoon, she was doubtful that Lipitor was the culprit, but agreed to switch Mike to a non-statin cholesterol-lowering drug.
Dr. Parker repeated tests a few weeks after Mike stopped taking Lipitor. He showed some improvement. Could it be that simple? No. Nothing was simple. But I was grasping at some cause that could be addressed, that could make things better. Whatever slight improvement Mike showed was, I now think, accidental. At the time it gave one of those not infrequent, short-lived glimmers of hope.
In Dr. Parker’s “Summary and Conclusions” of the three sessions of testing, observation, and conversation with Mike, he stated that Mike showed impairment in Working Memory and Processing Speed, and that he also exhibited “symptoms of chronic undiagnosed AD/HD, complicated now by depression, medication side effects and aging.” He ruled out bipolar disorder and, on the basis of other tests, concluded that Mike was “an intelligent, artistic and capable individual … able to compensate at times for his extreme distractibility and inattention…. He allowed as how Mike was unable to fully compensate in all circumstances.
The brochures available in Dr. Parker’s waiting room offered information on the symptoms and possible treatments of AD/HD/ADD, and where to find support groups for both adults and children. He gave Mike a lengthy AD/HD checklist that included sections related to inattention/distractibility, impulsivity, activity level problems (both over activity and underactivity), noncompliance, underachievement/disorganization/learning problems, emotional difficulties, poor peer relations, and impaired family relationships. Mike gave it a quick glance and left it untouched on the kitchen counter. That would have given him a check in the “very much” category of “short attention span, especially for low-interest activities.” On the other hand, couldn’t about 99 percent of the population check that box?
Although I was aware of Dr. Parker’s bias toward AD/HD, I was willing to cling to any possible diagnosis that offered a specific treatment. Dr. Parker’s suggestions for treatment included a review of meds and a recommendation that Mike stop taking Topamax, which he said sometimes had memory loss side effects. He recommended that Mike take Ritalin to address possible AD/HD. He suggested starting Aricept, often used with Alzheimer’s but also with other age-related cognitive impairment. He also recommended omega 3 fatty acids for brain health.
Dr. Parker strongly encouraged changes in lifestyle—sleep, diet, exercise, motivation. He recommended that Mike get connected with a physical trainer and work toward three to four times a week of fairly vigorous exercise. He ended his recommendation with a sort of pep squad cheer: “Fight for brain health!”
As soon as the office door closed behind us, Mike said, “I’m not adding any more drugs to my body!”
“Well, you’d be taking one away, Topamax, and adding a stimulant.”
“I don’t have ADD! All he wanted to do was play cards!”
I encouraged Mike to follow up on Dr. Parker’s suggestions for lifestyle changes. By this time, though, any encouragement from me only elicited resistance. Matt and Sharon both talked with Mike about getting more exercise and eating more sensibly. He always agreed that more exercise or a better diet would be a good idea, but that was as far as it went.
In October, after consulting with Dr. Bertoli and also with Dr. Carlson, Mike agreed to take Dr. Parker’s advice, gradually drop Topamax, and, also gradually, add Ritalin to his daily drug intake. His mood and energy level were slightly improved with Ritalin, but not his difficulties in keeping track of things.
Clinging to the good news that whatever was up with Mike didn’t follow an Alzheimer’s pattern, I was also reassured by the results of his MRI. “Mild chronic sinus changes…. No evidence for acute sinusitis. Mild age-related changes of the brain. Otherwise, normal brain MRI.”
In September, Mike entered a sleep clinic for an overnight polysomnography evaluation. The results showed mild sleep apnea. He was set up with a continuous positive airway pressure (CPAP) mask. A technician came to the house to walk Mike through the processes of using the mask and returned the following week to reinforce the practice. Although Mike assured the technician that all was going well and that he was sleeping with the mask on all night every night, he generally tried it for an hour or less, then set it aside.
Gradually, almost unconsciously, I’d been covering more and more details for Mike—helping him with email, keeping a backup calendar for his appointments, getting him to and from appointments, and generally watching out for whatever was next. He resented being “monitored,” and I resented the time suck of monitoring, but Mike was losing too many details when left on his own.
Puttering around in the kitchen one afternoon, I heard the phone ring, then heard Mike telling the caller his Social Security number. I went to him and tapped him on the shoulder. “Who’s that?” I mouthed. Mike glanced at me, then repeated the number. When he hung up I sat down beside him.
“It’s not a good idea to give out your Social Security number on the phone,” I said.
“It was just the bank.”
“It could have been anyone,” I said.
“It was the bank! Citibank! That’s what she said!”
“The bank already has your Social Security number.”
“They wanted to confirm!”
So now I needed to pay closer attention to phone calls, too.
In the category of paying closer attention, I was interacting with Mike’s church choir singers in a way that I’d never done before—confirming rehearsal dates and times, calling Mike’s attention to choir-related emails, even printing such emails out for him. I’d had hints from some of the choir members that rehearsals were sometimes disorganized. Nothing stated outright, but there was a subtext. One of the choir members, Susan Forester, was also on the staff as a part-time nurse. She and I had connected easily at choir parties, and I felt I could talk with her in confidence. I made an appointment and met with her in her office at the church. I told her I had some concerns that Mike was having difficulty keeping track of things, and asked if she had observed any such difficulties. She had.
She wondered if he might be having petit mal seizures. There were times when he would seem to blank out for an instant, then come back. He was less organized in rehearsal than he’d been the previous season. She emphasized how much they all loved Mike. What a wonderful musician he was, etc., etc. But yes, she and others were also concerned that something was wrong.
Notes from my very sporadic journal entries indicated the same behaviors at the end of December 2008, as those listed in 2007, though each of the behaviors had become more pronounced. What in 2007 had been “occasional indifference and self-absorption with others,” was now constant rather than occasional.
Prescription drug intake had increased both in variety and dosage.
I had two of those plastic containers with divisions for each day of the week. One was clear, and on that I put a sticker-picture of the sun. The other one was dark blue, opaque, and I gave that a sticker-picture of the moon. But in spite of my efforts to help Mike know which pills to take in the morning, and which in the evening, he could no longer handle his meds on his own. In addition to keeping track of his calendar, helping him with email and all things computer related, seeing to it that his car got serviced, and aiding communications with him between both church choir and Chanteuses singers, I was now managing his meds—refilling prescriptions, putting pills in weekly plastic containers, doling them out first thing in the morning and before bedtime, and hiding the containers between times.