My wife M was born in the Bay Area, and we met and married while we were both attending UC Berkeley in the 1960s. We have lived in Santa Fe, New Mexico for 25 years, but have retained close relationships with friends in the Bay Area.

I retired from a career in physics in the mid 1990s to be immediately confronted by two years of mounting confusion as signs of dementia appeared in M at a slowly increasing level that I was able neither to understand nor to avoid. The next two years were perhaps my most agonizing. I was increasingly unable to understand the changes that were happening and became increasingly frustrated as I made ever more determined efforts to get doctors to diagnose her. Her outgoing and gregarious nature, her attractive dress and demeanor, and her continued ability to dominate increasingly meaningless but nonetheless fluent conversation made it difficult for her doctors to realize that something was wrong.

In 1999, the testing was finally done that led to a diagnosis of probable Alzheimer’s. The patient’s partner is perhaps the best judge of changes, and the enormity of the anticipated diagnosis makes it extremely difficult to broach the issue of dementia with others, let alone to face it oneself. Until the diagnosis is made, however, grieving and eventual accommodation and healing cannot begin, replacing an unacceptable and debilitating state of uncertainty.

In the three years after diagnosis, we tried new Alzheimer’s medications, invariably producing only secondary adverse reactions. The geropsychiatrist I have been going to on M’s behalf questioned the diagnosis of Alzheimer’s disease from the start. If only because of the adverse reactions experienced by non-Alzheimer’s patients, it is increasingly necessary to differentiate one progressive dementia from another. We were referred to a neurologist who immediately made a diagnosis of FTLD (frontotemporal lobar degeneration), after which, at the advice of a friend from the Bay Area, I took M to UCSF. Dr. Miller’s group tested her and readily made the anticipated diagnosis of semantic dementia.

The behavioral medications which Dr. Miller recommended, first Celexa/Lexapro and then a year later Seroquel, significantly changed the quality of our lives. Although they did not stop the progression of the dementia, they calmed M’s increasingly frustrated, hyperactive and agitated behavior, resulting in her being able to interact better with other people and to accept the increasing constraints being imposed on her everyday activities. During this period, I assembled a group of caregivers to assist me in caring for her an increasing number of afternoons per week and occasional evenings in order to provide me the necessary free time to come to terms with the enormity of the deteriorating situation. I also started to spend time away for a few weeks at a time, a luxury that is indeed a necessity since two lives, not one, depend on the demented person’s primary caregiver maintaining independence and equanimity.

With the help of the calming medications, in the last few years M has become increasingly happy, even joyful, as she slowly declines into something amazingly approaching a state of grace. M is blessed with a total lack of insight as to her condition. We live in a peaceful country setting with minimal stress. She continues her previously well-established routine of exercising a few times a day and habitual daily activities such as arranging intricate tea services at breakfast and in the afternoon, dressing herself and caring for her personal appearance, concerning herself with the appearance of our home and even keeping a daily diary, which is as meaninglessly and meaningfully paraphrased as her speech. M daily spends time by herself in an ever more childproofed yet minimally constrained home environment. As in the past, she requires near constant activity, which she continues to seek out. Her core personality is amazingly unchanged as it motivates her everyday in familiar yet occasionally inappropriate ways. As her proficiency steadily decreases, she requires increasing supervision, but I have tried to allow her as much freedom as possible, subject only to constraints of personal safety.

Through all this, a love and intimacy has unfolded typical of what I would anticipate to exist between mother and child. M has regressed further and further back into a childhood that I believe to be happier than the one she had 60 years ago. Her fluent speech is now reduced to a dozen or so paraphasias of varying and uncertain meaning. "I love you" is the only one with an undeniable meaning that we can truly share; the joy typically evident in her ever-bright eyes is further proof of her happiness. I question whether her life is any less happy now than it would have been had her dementia never surfaced.

Our life situation is perhaps typical of our times. We are separated from our extended family (our two sons live thousands of miles away and visit a few times a year) and community is totally a function of our own making. We increasingly rely on doctors and their diagnoses and medications, but ultimately we rely most on ourselves. I have taken to Buddhism and Jungian philosophy and new relationships to provide the foundation for a deeper understanding of myself. This has allowed me to grow into what I hope is a compassionate human being, able to turn tragedy into self-realization and to help others.

The moment lasts forever
petals floating in its wake
as all our precious objects
change and disappear
and all we see and all we know
rattle on their journeys through the mind
and all we have and all we need
lie hidden still
inside the heart