Alzheimer's Day Underscores the Need for Compassion in Trying to Get an Early Diagnosis
Dad and I had a long conversation last night about Mom's diagnosis. Prompted by the HealthCentral producer's request for shareposts about Alzheimer's Day and the importance of early screening for Alzheimer's, Dad and I came to an agreement: Mom actively avoided being diagnosed. Having taken care of her own mother (who had the disease) and seen her grandmother also succumb to dementia, Mom was terrified of following in their footsteps. And being the strong-willed woman who was always in control, Mom was able to do anything to avoid seeing a doctor about her memory issues.
We had several chances for an earlier diagnosis. In 2003 and 2004 Mom was hospitalized twice for her lung condition, Dad remembers the attending doctors telling him (but not Mom) that they detected dementia. I also remember going with my parents to an appointment with a neurologist who had been recommended to our family around 2004. This doctor quickly and impersonally proclaimed that Mom had Alzheimer's. (Talk about no bedside manner; this particular neurologist was more interested in flirting with the drug company representative who was in the examination room than focusing on my mother and the psychological implications of his verdict). Needless to say, Mom was traumatized by not only diagnosis but also by this doctor's behavior, and quickly dismissed his medical opinion.
We finally got closer to a diagnosis in 2005 when Mom agreed to see a neurologist near where I live. This doctor took the time and care to focus on her psychological needs and to do a number of tests to try to determine why she was having memory loss. He referred Mom to a psychologist for two-day testing. The results of that testing found that Mom had mild cognitive impairment (MCI), but not Alzheimer's. The neurologist wanted Mom to do a few more tests (such as an MRI), but Mom refused. Both Dad and I tried to encourage her to use the neurologist's recommendations to find out what was behind her memory loss, but Mom was adamant, perhaps being relieved that she had been diagnosed with MCI instead of the dreaded Alzheimer's.
A year later when Mom moved in with me, I was stunned by Mom's rapid mental decline, which not only included memory loss but also full-blown paranoia. Because I was bewildered by this new behavior (which was so unlike the mother that I knew and which I had not experienced before), I asked the emergency room doctors for a geriatric psychiatric evaluation during one of Mom's trips to the local emergency room.
I tell you this saga because my mother - and probably others - was too terrified to get a diagnosis, especially for a disease which doesn't have a cure. But what would have happened if Mom had agreed to a diagnosis?
Here's what Dad and I hypothesized last night. First of all, Dad said they probably would have moved closer to me. (Note: my brother lives in Colorado, which would have precluded my parents from moving there due to the altitude and Mom's lung disease). In fact, Mom started trying to encourage Dad to move to an apartment in a retirement community near me starting in 2002 or 2003, but my father hesitated in committing since they had a house to sell in the West Texas city where they lived. I asked Dad last night, "Do you think, in retrospect, that she knew something was wrong with her mind, and that was why she wanted to move?" He thought about it for a moment, and then answered, "Perhaps."
I also believe that if Mom had agreed to a diagnosis that I (and perhaps my father) would have started learning about the stages of the disease and done a better job of anticipating what would happen. Instead, we both focused on the progression of Mom's lung disease.
I also believe that if we had had an earlier diagnosis, that much of the stress and strain in my parents' relationship from 2002-2005 might have been reduced because my father would have know what was going on (and I could have stepped in to either coach him or to spell him so he could have gotten a break).
Obviously, an early diagnosis of Alzheimer's can be beneficial, both for early treatment as well as for logistical planning. In our case (and for many other families), it wasn't possible due to the terrified reaction of the loved one who is experiencing this dreaded disease. For those people to reach a point of diagnosis takes tremendous compassion not only by family members and friends, but also by the medical community. And sometimes, unfortunately, that compassion just won't be enough.