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Life imitating art...in my own life
on January 19, 2009
Alice Howland taught cognitive psychology courses at Harvard for over twenty-five years. Alice and her husband, John authored Molecules to Mind, she published papers, and lectured around the world. Her three children were grown and on their own paths (not that she was very happy about Lydia's choice of acting, but she hadn't given up trying to influence her to go back to real school). Her son Tom was doing well in school, daughter Annie and her husband, Charlie are attorneys trying to conceive a first grandchild.
Facing a busy schedule and travel and everyday stress, Alice isn't concerned when she begins to forget little things, where the keys are, names of acquaintances or a momentary sense of disorientation. After all she is fifty and that is part of menopause. .
A trip to her family doctor to get some suggestions for cognitive memory reinforcement and to see if medication is available does not help. Alice is stunned to learn that she has Early Onset Alzheimer's and that there is not very much available for treatment. Telling her husband and children is even harder to face. Eventually she has to face the loss of her teaching and life's work.
"Still Alice" is Alice's voice as she struggles with the advancement of Alzheimer's. As the disease advances, she is living more in the now, and often hurt by her interpretations of family member's words and actions. She reacts with anger and confusion as her world shifts and becomes more unfamiliar and frightening. Her family also has to deal with their emotions. The realization that their funny, loving accomplished mother and wife is slowly disappearing before their eyes are devastating, and they each react differently. Alice tries to stay aware of what is happening, but has the disease advances her voice becomes quieter and briefer. Lisa Genova has a Ph.D in Neuroscience from Harvard University and works with several Alzheimer's organizations as well as serving as the online columnist for the national Alzheimer's Association. Although "Still Alice" is a work of fiction, it is apparent there is much drawn from real life experiences and observations. Genova has given a voice to a population not usually listened to. The characters are facing uncertainty and struggling with Alice's decent into unknowing. There are moments of hilarity as well as heartbreak. This book will touch anyone who works with dementia patients, or who has a friend or loved one with Alzheimer's. (early 2008)
Less than a year later finds me, the reviewer, caring for my own father in my home as he succumbs more and more to his organic dementia. We have had to uproot him from his home in Texas to move into our home in Utah where either my husband or I can be with him around the clock. We moved into a house and I have drastically cut back on my work load. I keep looking back to the pages where Alice tries to describe her confusion and tries to frame what she wants from those around her so I can somehow meet those same needs in my Father. I fear I am falling short.....there is so much anger directed at me and my husband for moving him away. We couldn't transfer out jobs down to Texas and survive. Being over fifty we couldn't walk away from careers with tenure and pensions. Between my 7 other siblings there were too many teenagers (too much stress) too many young children (ditto) and a widowed sister looking for a possible husband. Oh, and the inevitable family conflicts. No matter how hard I have tried I feel I am falling short. "It's nothing personal, Mary....I like your brothers more than you" Dad hates it here, it isn't working. "One night I am going to walk right out of here and won't that be a surprise in the morning?' Dad often says the blessing at dinner and is sure to add "Please bless this food especially since Mary has cooked tonight" that is if he can manage to say all that before we all get the giggles and just say "amen". I work with this type patient everyday at my job and I still cannot make it work in my homecare for my own Father. I reread Still Alice as a roadmap. it is my best guide.....though the road is unknown and I feel completely unprepared to travel it. I have no choice I must keep moving on....