I recently finished reading Still Alice by Lisa Genova and really enjoyed the book. While this is a book about a woman who is diagnosed with early onset Alzheimer’s disease (EOAD), it is not a true story and is categorized as fiction. The author wrote from the viewpoint of the very intelligent woman named Alice who is diagnosed with dementia while in her fifties and at the pinnacle of her career as a college professor. And this perspective makes it a very interesting read, getting you in the head of the Alzheimer’s patient to understanding their confusion and how they interpret their own mental decline.
The story details only a couple of years after Alice’s diagnosis, so the grim details of end-stage Alzheimer’s is omitted completely, as is Alice’s death. Her family, including a husband and three children, are portrayed in agreement of Alice’s care for the most part, with only a few minor family squabbles, while her husband remains the primary caregiver for the entire length of the story. All in all, Still Alice is a well written story and interesting read about the onset of Alzheimer’s and how it affects the patient and their family.
I have to note that Still Alice is very different from my own experience with my mother’s Alzheimer’s progression. Alice admits she has a problem in this book, recognizes the need to see a doctor, and follows her doctors’ instructions while remaining civil to those she loves. My mother never would admit to anyone she had a problem or needed help and refused to see a doctor, even when everything started spiraling out of control. And she became extremely mean and paranoid with all her kids, making it difficult and unpleasant to deal with her at all. My Mom went so far as to accuse all her children repeatedly of trying to “lock her up and take all her money”.
Alice also had a husband willing and able to care for her and ensure her safety, also not the case for my single mother who lived alone and stubbornly refused to let any of her five children help her with even the simplest of things, liked paying her bills or balancing her checkbook.
Alice’s family got along well in a loving manner and worked together to provide for her care and safety, while my family never agreed on the best course of action for our mother and fought bitterly over decisions. And because my sisters and I all had jobs and children of our own to take care of, it was never an option for any of us to take care of Mom full-time once that became necessary. This forced us into nursing home placement.
It just proves there are a lot of different Alzheimer’s stories out there. Everyone’s experience with dementia is different, while everyone’s experience with the illness is guaranteed to be devastating.