How Do We Know? What Do We Do?

How do we know?  What do we do?

It sounds insane, but that summer of 1996, we hoped a CAT scan would show a brain tumor. You can cut out, medicate, or radiate away a tumor.  You can know an outcome, good or bad.  This hazy thing called Alzheimer’s:  “How long?  How to cope?  How do you die?  How do you live?”  

The doctors can’t give definite answers.  There’s no standard for length of the disease: progressions vary, symptoms vary.  Separating Alzheimer’s from other forms of dementia is tricky.  Absolute certainty of diagnosis is impossible:  you don’t have a brain tumor, don’t have Parkinson’s, and on through a long list of don’ts until the probability left is Alzheimer’s, but Alzheimer’s can only be verified by a post mortem autopsy.  

New techniques are being developed that involve brain waves analysis and biomarkers in which biochemical, structural, and metabolic factors are analyzed and may make diagnosis more certain.   

Dan’s CAT scan did not reveal a brain tumor.  More tests.  A day of written math, comprehension, and language tests.  Anger at the intense concentration needed. Finally total exasperation because the answers aren’t retrievable, the questions senseless.  Hostility.  The testing, after six hours, is called to a halt, and the tests for the next day are canceled.  Test results:  less than third grade math and general comprehension levels.....Fear and anger.  

Dan’s thoughts, I’m sure, were full of frustration and confusion: I do know I can’t sequence numbers, can’t remember a list, can’t remember meetings, changes in plans, faces.  I know I fake it.   When I call  my wife when she is up north, I have her letter in front of me with “yes” or “no” written in next to the most simple questions she has asked.   If she presses me for the more precise answers she expects from me, I am evasive.  I don’t know the answers.  I don’t know why she asks these questions. 

I found  letters from me along with notes for phone calls to other people detailing exactly what Dan would say.  Everywhere I found notes and lists he used to help him get through his days.

The neurologist confirms the conclusions:  Alzheimer's.  “But there are new drugs.  They won’t cure, but will slow down the process....Maybe in time...you may be lucky and they will find a cure....” 

 I can read on Dan’s face.... Yes.  Surely they will find a cure.    This terrible thing can’t happen. 

I am thinking the same thing.  We needed something to keep us afloat and so grabbed on to hope, defined by Emily Dickinson as “the thing with feathers that perches in the soul.”    

 Dan agreed to try Cognex (generic Tetricine), a Parke Davis product that was new on the market.  The company provided an 800 number and their nurse phoned us once a month to ask how we were doing. Every two weeks we had to go to the medical center where Dan’s blood was drawn to make sure there was no liver damage (a possible side effect).  Parke Davis sent information on the drug including a chart that showed a twenty-six week improvement for most recipients of the drug, then decline, and finally a progression no different from those who had not taken the drug.  Cognex was later replaced by Aricept (generic Donepezil), a product with a smaller dosage and, therefore, no need for weekly testing, but the effective time was still limited.  Six months, I told myself, that we could count on things being stable, and then what was the next possible hope?   

Dan was irritable, scared, and unable to plan.  He seemed grateful when I made decisions but became angry and irrational when things upset him.  His responses confused me. My responses confused him. At night we held each other.  

“I’m so scared,” he would tell me.  “Me too,” I would tell him.  We made love, desperate love, resisting dissolution.

 Dan’s medical leave of absence from the college had begun on June 1, 1996.  That fall we decided to sell our old house, close out that part of our lives, finish our retirement home, and travel.   Do the best we could.  If by the next spring Dan was better....what if he was?   He could rent an apartment near the college and go back to teaching. We had so much to do while we could.  We felt a need to hurry, but to where we weren’t entirely sure.  

The house sold, the movers came, and we now were full-time residents of our dreamed of home in the woods. Our lives had new boundaries and new routines evolved.  We made the biweekly trips to the local medical clinic for the blood tests.  I bought a pill box that had a space for each of Dan’s three pills a day—I still had to remind him to take them. That first year, if I left simple instructions when I substitute taught or covered stories for a local newspaper, Dan was able to fix dinner.  I turned down the  offer for a full-time writing job, and struggled to exorcise my resentment toward what: Dan, fate, the universe?  

Note: Believing/accepting the truth of an Alzheimer’s diagnosis is hard for both the person with Alzheimers and those around him or her who love that person.  It is a grief without death, a living sword that poises overhead slowly descending, prolonging fear and grief.  Caregivers often deny the extent to which a loved one has declined because it means giving up so much and it means telling that person he or she can no longer drive or be part of bridge club or other activities.  It means having to assume responsibility for cooking, making major decisions and a thousand other things.  For the patient the loss of abilities to do things is frightening and frustrating.  For the caregiver, having to take on so much responsibility is overwhelming, a reason for denial and a cause of intense anger.

Something Seems Wrong

I can’t say when the changes in Dan began, but most likely when Dan was in his mid-fifties. The earliest I can pinpoint is  February 1992—Dan was fifty-six. He showed me an intended final draft of the paper he was presenting at an event honoring a professor who had been Dan’s mentor. The paper lacked the clarity that was  characteristic of Dan’s work.  I didn’t criticize but did ask lots of questions. The version he delivered was more polished but pieces of research were missing.  He told me he couldn’t find resources that I knew must exist.

Other incidents increased my concern: Dan’s confusion over facts he knew well, his inability to remember how to do certain things. By the fall of 1994 I was confiding to our children that I believed something was wrong. We looked for logical explanations.  Perhaps depression. Dan’s mother, a very dependent person, had had serious depression for a number of years after Dan’s father died. That this brilliant man with whom I shared a life might have Alzheimer’s never entered my head; it wasn’t part of his family heritage. Depression seemed a probability.  Was he depressed because we were living in separate locations? He wasn’t thrilled about the separation, but it was to be only for two years until 1994.  

In 1994 he postponed retirement, and he became obsessed with retirement funds and money. He attended meetings about retirement and then tried to explain the information to me. I found glitches in his explanations. 

In March of 1995 he attended a conference in Memphis where, he told me, he had a strange experience. The walk from the conference center to his hotel was a straight shot, but when he came out of the conference center he hadn’t had a clue which way to go. I questioned him closely, but he shrugged it off. He had walked around and figured it out.  

I became seriously concerned when Dan began to have problems balancing his check book. His check book always balanced to the penny. Sometime in 1995 he began seeking the help of the cashier at the bank if I wasn’t around.

Our sons shared my concern.  They would call and talk to him to make sure he was all right. He was taking long rides in the car, “to clear my brain,” he told one son.  

During the spring quarter of 1995 he complained about students not paying attention, not understanding.  Dan had won awards for his teaching, was beloved by students, and had the most clear and precise lectures imaginable.  I asked a close friend to let me know of any rumors on campus about Dan’s behavior.  She called me early in the fall of 1995.  Several colleagues on campus had mentioned to her that Dan seemed vague and confused in casual conversations.  He was forgetting appointments and meetings.

Our son Mike’s wedding in October of 1995 was a turning point for our children. They witnessed their father’s inability  to respond to questions, to organize his thoughts, and to plan.  

“Maybe a brain tumor?” our son Mike wondered, and pressed me to do something.  

I urged Dan to see a doctor.  He resisted.  At Christmas he left our basement abode in anger and returned home because I was insisting that he seek an evaluation.   

In January of 1996 he saw our family doctor for a physical.  Dan called me feeling very happy.  He had passed with flying colors.  I had alerted the doctor of my concern and was disappointed the doctor had not identified the problem.  

In February I drove down and stayed with Dan for a week. I made an appointment with the doctor who told me physically Dan was in good shape.  When the doctor had questioned him, Dan had given no details that hinted of depression or other mental problems.  Was he having problems with his teaching? the doctor asked me. Yes.  The grapevine scuttlebutt was that Dan had only a handful of students in his class, and that students were complaining about his teaching. The following quarter, all but one or two students dropped his classes within the first two weeks.

I called the doctor, and he recommended that Dan return for a few simple tests involving sequencing numbers and recall. That May, as we sat in his office to hear the results, he pronounced the verdict. The University administration agreed that Dan should take a medical leave of absence, and Dan came north with me.  Alzheimer’s took over our lives. 

The Awful Truth

As a place of beginning, I will start with the moment of diagnosis.

The Awful Truth

The words spoken to my husband could not be true. I moved into the zone that momentarily shields from reality and waited for the specter to go away.

“You have Alzheimer’s.  I’m sorry....”   Our family doctor’s voice trailed off.  

“I’m so glad it’s over”  I was startled by the voice.  It did not sound like Dan.  

What was over?  What did he mean?  Had he known something was wrong with him?  Had his own denial covered his fear?

It was May of 1996.  My husband, Dan, was sixty years old, and we were in the midst of catching hold of our dream. Like many couples, Dan and I were often Janus-like, facing opposite compass directions, but we managed to coordinate our lives enough to move, however clumsily, in ways that offered mutual satisfaction and confirmed our unity.  We had both been firm in our decision in 1988 to transfer our lives northward.  We had spent twenty summers vacationing in northern Minnesota, and we loved the pine forests, lakes, and craggy landscape.  We had canoed and hiked many miles with our sons and had spent countless hours fishing on the lakes.  The Northwoods was a place of beauty and peace, a place that felt like home.

In the fall of 1989 we had found our “perfect piece of land,” deep in the northern Minnesota woods, and Dan drew the plans for our “perfect home”:  a music room/study for him on the main floor; an upper half-floor with my study and a guest bedroom; and in the basement a guest suite with bedroom and sitting room/library.  We envisioned an active life together hiking, canoeing, snowshoeing, skiing, and fishing.  Colleagues from our professional lives, friends, and family would come for extended visits.  We had plans to travel.   

In January of 1992, I had taken up residency in the basement of our future home—which as yet had no upper floors. Dan had continued teaching at the college and living in our “old house.”  He spent summers, quarter breaks, and Christmas “up north” with me. I taught part time and worked as a free lance writer.   From time to time I traveled down to be with Dan.  We were poised between our past and our future, and we were excited and full of expectation.

Welcome

For ten years I cared for my husband, who first showed signs of Alzheimer’s in his late fifties, after he was diagnosed with the disease.  I found during those years of caregiving that it was helpful to share the journey of caring with others in similar circumstances—people who understood because they, too, were experiencing what I was. Since my husband’s death, I have become a mentor for a group of people who are caring for family members with Alzheimer’s. They add to my understanding of the journey caregivers must make. Some days it can be lonely when you are a caregiver/caretaker. Sometimes you don’t know whom to turn to.  I would encourage all who are caregivers too find a local group to be a part of, but this, too, can be your group.  Hopefully the conversation here will be useful to you, and you can share your own questions, discoveries, stone walls, and moments of joy.