Lewy Body Disease slices life into two: before LBD and after. Equal partnership shifts to caregiver and care receiver. Roles change into the manager and the managed. Companionable communication becomes silence. Old dreams morph into new realities. Old assumptions become new challenges.
We lived a pretty normal life until Lewy Body symptoms snuck in. In our early years we were good friends, and we disdained those marriages where there was frequent quarreling. Sometimes Nelson and I would lock eyes in secret dismay at the servitude expected by another husband of his wife. When there was disagreement, we could usually talk things through. We had our share of relationship conflicts, but they were the exception not the rule.
My increasing sensitivities to environmental fragrances and chemicals wore me down. A whiff of hairspray from someone could send me into a severe reaction that would last for two weeks. “I get tired of you being sick,” he said once. Little did we realize the tables would turn. A decade or so later, his unexplainable behaviors began to slide in alongside my changing menopausal body. I felt confused and unable to focus on why quarrels were becoming more frequent. Often these quarrels were brought on by trying unsuccessfully to work together or by bungled communications. My refrain was, “It doesn’t make any sense.” I did not yet know that normal differences in tactics and communication had crossed the line into disease driven dementia.
Neither did I know that a protein, alpha-synuclein, had taken my husband’s brain hostage. We lost our equilibrium as this cellular level activity took over our lives and turned our focus to survival. Our siblings worried over our aging parents, their adult children, and college bills. We, in the meantime, were trying to survive an onslaught of confusion over symptoms that were like those of my parents, who by now were approaching their eighties. I looked at his stooped posture one day and thought, “I am married to a man who seems as old as my father.” We were in our early fifties.
Today my friends and sibs focus on being green, traveling, visiting children, and babysitting grandchildren. I focus on how to deal with the list of challenges of LBD and MCS (multiple chemical sensitivities). I try to stay on top of changed roles, challenging behaviors, and lost functions.
Is this another urinary tract infection or a move into incontinence? Is he taking Namenda needlessly? Is his TB test, required for day care, up to date? Is having his eyes checked doable? How long will it take for him to decide each time the optometrist asks, “Is this clearer, or this?” What is the next step for my own mental and emotional health? Can I find an in-home health aide who is fragrance-free?
In 1997, when Nelson was first diagnosed with LBD, there was little literature about the disease. What I could find to read, said LBD was rare. Now we know that it is not rare, but the second leading cause of dementia and frequently misdiagnosed.
Before diagnosis, when I would air my frustrations to peers about odd mishaps and behaviors, the response would often be “My husband is like that.” Or empathizers would say, “That could happen to anyone.” My intuition said this was different, but I couldn’t seem to sort it out because yes, very often he functioned in a way that seemed normal. Now I know that fluctuating cognition is part of the disease.
One morning, early in our marriage, we had the luxury of sleeping in. When the phone rang Nelson got out of bed and took the framed marriage certificate off the wall. He then crawled back into bed, but never answered the phone. Puzzled, I asked why. “It might be Ed,” he said, referring to his brother, still not aware of what he had done. We shared that story and laughed many times with friends. Now I wonder, was this a first manifestation of the REM Behavior Disorder or just a fluke that truly could happen to anyone?
When I first met Nelson, I was astonished at the smallness of his handwriting. It was miniscule, though for a time while he was teaching, it seemed to improve. Now I know that small handwriting is a symptom of the Parkinsonism part of the disease. And I wonder, could this have been a precursor?
When I met Nelson, I noticed something unique about the way he ran. His palms always faced behind him instead of facing his body. It looked stiff and awkward. Now I know that another way LBD manifests is in stiff movement. Was this another small signal of what was to come, or just a unique Nelson trait?
Before LBD I thought Nelson and I could make almost anything ok. Now, with LBD, he needs me to make everything ok for both of us. Some days I’m successful, other days, not so much, but success and failure are part of all life, before or after LBD.