'til Death or Dementia Do Us Part

by Marilyn Reynolds

  I’ve since talked to Mom a bit more about this, and, as you know, she’s very concerned. It’s clear she feels a sense of urgency, and she’s indicated that you seem hesitant to look closely at this issue—at times, even a bit defensive about it. She and I discussed some possible factors, including the general dynamics of your relationship with each other, depression, your medications and the issue of “living in your head” (something I can completely identify with). And, of course, we wondered if there might be something physiological going on. This last possibility is scary to us, as I know it would be and is to you. Because these kinds of issues are both terrifying and a fact of life for anyone who lives long enough, I wanted to encourage you to get some kind of professional evaluation. I have a strong feeling that these tics or mental hiccups or distracted interactions (whatever they should be called) have multiple causes, one of which MAY be physical. But a doctor’s assessment would help put to rest many of Mom’s (and my) concerns.

  This is a hard email to write, Dad, and I’m sorry to collapse these two issues into each other in this message—the one so positive and the other so difficult. But they are not unrelated, and if something physical is going on with you, it’s really important to address it as soon as possible. As I said the other day, I love you so much, and now that Mika, this amazing new person, has been added to our lives, I want to make sure you’re present on this earth for as long as possible. (Not that I didn’t want that before, too.) I guess in that way I’m hoping you will consider getting an evaluation not just for Mom but for me and for Mika and for the considerably large group of people who love you and selfishly want the same things.

  Please let me know what you think.—Matt

  Mike responded:

  Dear Matt,

  Thank you for the honesty of this email. I know it was not easy to write.

  I continue to believe that there is nothing physically going on in my head or body, but have not ruled out that possibility. I have a physical coming up soon, and will discuss this with my doctor.

  I continue to think that I’ve put myself in the wrong place when deciding to leave LA. Sacramento just doesn’t offer enough to satisfy me emotionally or musically. I wish that this were not the case, primarily because Mom is quite happy here. I tend to live a great deal in my head, and that gets me in trouble with myself and with other family members. I often have a strong need to distance myself from the “noise” and the chaos of the house. I really meant to share with you the book about the Highly Sensitive Person. I think sometimes that I’ve put myself between a rock and a hard place. I care deeply for this family and for what we stand for, but find too often that I have a strong need to keep some distance for my own sake/safety/sanity. I have all too often found this a great burden, and wish that it were otherwise.

  I often hunger for Intellegicual [sic] involvement, and know that I’ve put myself, knowingly in a church that is not going to offer that. Once again I’ve perhaps sabotaged myself unwittingly. I only know how to put one foot in front of the other. I think I learned that at a very early age from a most unknowing, uninvolved mother.

  I know that you know how very proud I am of you and Leesa and Mika. I continue to believe that it is not possible to love you more deeply. I look forward to the trip to Walla Walla and the visit with all three of you.

  Thank you again for taking the time and energy to write these thoughts. I have printed them out and will re-read them again as I continue to “digest” them over the next few days.

  Give Mika a big kiss from Grampa.

  I love you all.

  Dad

  As with his perception of the pianist’s detailed explanation of why she could no longer work on the Yip Harburg program, Mike seemed not to take in many of the details of Matt’s message. He was touched by Matt’s tributes to him in the first paragraph but rather than addressing Matt’s specific concerns, he went to his now fallback position that there was nothing wrong with his head, and to an accounting of dissatisfactions with his half-empty life. Though his complaints about Sacramento and the church had become like a broken record to me, parts of his response were more puzzling. I didn’t understand what he meant by “the ‘noise’ and the chaos of the house.” I didn’t understand how living in his head got him in trouble with family members. And what did he mean by “this family” as if he were not a part of it? But Mike and I had become so distanced and defensive with one another that I didn’t even try to talk with him about any of that.

  In September, we enjoyed an overnight in San Francisco. We walked from the Inn at the Opera to Davies Symphony Hall, where we both thoroughly enjoyed selections from Mozart and Tchaikovsky conducted by Michael Tilson Thomas. The evening was brisk but pleasant, and after the performance we walked to Jardinière, where we sipped Kahlua and cream and relived moments from the concert, including the overly friendly woman who sat on Mike’s other side and at one point rested her head on his shoulder.

  “I should have kicked her butt!” I told him.

  “She outweighed you,” he said, which is, of course, the perfect thing for any man to say to his unsuccessfully dieting wife.

  The next morning we wandered through Golden Gate Park, then went to the de Young where we browsed through the textile collection, looked at the American Sculpture and Decorative Art galleries and then ate soup and salad in the cafe before heading back home.

  Mike loved the San Francisco Symphony, the de Young, our little hotel, breakfast at Sears, ambling through Macy’s, the city of San Francisco. All of it. He was at his best in this setting. For that very brief period it seemed that all was well. Maybe it was. Maybe it could be.

  In the fall the Northminster choir work resumed, as did rehearsals for Chanteuses and Camerata. I began asking Mike for the Christmas choir schedule so we could figure out how to work around that for our Laguna Beach Christmas getaway, but Mike continued to say we were having Christmas at home, and no schedule was forthcoming.

  When Mike still had not provided a choir schedule by early November, I emailed the choir president, telling her I was juggling dates for family gatherings, and asking that she send me a copy of their December schedule. She quickly complied. The only conflict in the Laguna Beach/choir dates was for the Christmas Eve concert. I made a reservation on Southwest for Mike to fly back to Sacramento on the afternoon of Christmas Eve day, and to return to Orange County airport on Christmas morning. I went over all of the plans with Mike. He reiterated that he was staying home for Christmas.

  “Okay,” I said, and put the flight reservation information and receipt in the Laguna/Christmas folder.

  WILD GOOSE CHASES

  Fall 2008

  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 th
e 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?