It took months to get David’s first neurology appointment.  Neurologists are in short supply where we live, and specialists in dementia are especially thin on the ground.  We could have requested an evaluation at a large medical center in Minneapolis or Rochester, but it was hard to see what we would gain.  The medical literature on LBD is so limited that even someone without medical training could pluck out the few useful nuggets about treatment and disease management. 

Furthermore, it was already clear that every evaluation would involve cognitive testing, and anyone paying attention could see the inverse relationship between the value of those tests and the distress they would cause.  The first neurology appointment began with the Montreal Cognitive Assessment (MoCA).  The person who administered the test was in a hurry or was perhaps poorly trained – in any case, she rushed through the directions for the first task.  Baffled, David made a halfhearted attempt to follow the instructions, making little distressed noises all the while.  Failure at that task so upset him that he couldn’t manage tasks he could finish easily under different circumstances, like copying a diagram of a cube.  By the time the test was over, he was distraught.

The next time David took the MoCA, in the same clinic, a different person administered it. She spoke slowly and clearly, and she traced the pattern of the first task with her finger.  David could follow those instructions far better, but a higher score would probably be chalked up to medication.  Even if the test administration had been ideal and consistent, the results would have varied. One of the central characteristics of LBD is fluctuating attention and cognitive function, so his ability to do the tasks would depend on that flux.  All in all, as far as I could tell, the MoCA achieved little except to make David feel stupid and sink into despair.  David dreaded the test so much that I started pulling up a MoCA pdf from the internet before his appointments and practicing with him.  For the rest of his life, he sketched cube diagrams on scraps of paper to prepare for the next MoCA.

If the neurologist wanted to assess David’s cognitive function, why not ask us which tasks and situations had become harder? 

MoCA aside, the second neurology appointment was a debacle even before we arrived.  Productivity quotas at our healthcare facility mean that neurologists see a patient every twenty minutes.  Even so, the patient load in neurology was evidently unmanageable: the scheduler called David on the day of an appointment to say that he’d be meeting not with the neurologist, as scheduled six months before, but with a nurse practitioner.  The scheduler called again later to say that he’d be seeing a different nurse practitioner at a different time on that same day. 

The neurology department was calling a man with LBD, a man who couldn’t drive, a man with an uncertain grasp of time, to inform him about changes in provider and appointment time—even though I was listed in every electronic and paper file as the person to contact about appointments and changes.  I wondered whether the neurology clinic staff believed that it didn’t matter much whom he saw or whether he made it to the appointment at all.  I wondered later, as I paid the bill, whether we should even continue the appointments. 

Because LBD involves “Parkinsonian characteristics,” the second part of the neurology appointments was a brief physical exam to assess muscle rigidity and strength and problems with walking and balance.  We said at one appointment after another: yes, walking is becoming more difficult, but the greater problem is pain.  At last the neurologist referred us to her colleague, a pain specialist who looked past David and spoke directly to me throughout the appointment.  I was not the one in pain. 

As we consulted with doctors and fine-tuned medications – replacing Aricept with Exelon, adding Namenda – we also recognized that we would need financial guidance.  Doctors would make a plan for treating the progression of David’s LBD, but we also had to make a plan for the increasing care costs.  A friend recommended a financial planner who understood the complexity of managing money for five to eight years, but possibly two to twenty, with the expectation that David would spend some of those years in long-term care and that he might need Medicaid.  The financial planner outlined the strategy for managing David’s retirement funds until care costs exhausted them.  He also listed the documents we needed to have on hand: the will, signed and notarized; the power of attorney form, listing me as primary attorney-in-fact and Fiona as secondary attorney-in-fact, signed and notarized; the bank document showing that Fiona would have access to his checking and savings accounts at the time of his death; the transfer of deed on death for David’s house, unless we planned to sell it.  Of course, it was also time to make sure that David’s advance directive reflected his wishes.  We had versions of most documents, but changed circumstances meant reviewing and discussing every decision.