A brave lady

Today, over three months later I was able to register Carol's death. The coroner's report arrived yesterday about her post-mortem results. Cold, clinical and alarming. Fortunately the neurology professor in charge of her case 'phoned me and helped unpack its technical language. What came across clearly is that Carol was hit by two diseases, both of them very rare and when combined lethal. The coroner had never seen a case like hers in a career covering thousands of patients. As the prof. described them I could only marvel about the way she had kept going through these recent years. And kept going with such kindness and care for others even as she was battling through a black miasma of cognitive mayhem.  On the day she died her power to swallow had long gone as well as her speech. Yet, she struggled to thank visitors for coming just four hours before she died. While dementia can often mute a sufferer's understanding, Carol remained painfully aware of her disturbing  and painful decline. She really was a very brave lady.  I knew that sitting by her bedside but learning about these diseases makes me marvel at her heroism so much more. 

One disease (called AGD) was slowly progressive, gradually disabling Carol with neurodegeneration. Marked by grave changes in memory, personality and psychology, its strange cognitive lapses occurred in continuous clinical decline.  It is a frightening disease in itself and Carol's struggles to be 'normal' over recent years showed such bravery.  

But catastrophically (that was the word the prof. used) Carol was hit by rapidly developing brain stem encephalitis with symptoms like the loss of ability to swallow.  Even rarer and combining with AGD it speedily moved to death with lethal effectiveness. In her last few weeks she must have struggled every day to keep going. Always polite and grateful to nurses and visitors. Sometimes I saw on her face, utterly disfigured by disease, her desperate attempts to understand what was happening to her. What turmoil the combination of these diseases caused.

I believe she was sustained by God's grace but what mental torture she went though. The researchers are still working on her case to see whether they can find some hidden trigger that caused her precipitous decline. Probably we shall never know.  What a grand lady she was!