I have just finished reading STiLL ALiCE, a novel by Lisa Genova. I recommend it to any caregiver or person with a close friend or relative that has Alzheimer’s. The story is written from the interior perspective of a woman with early-onset Alzheimers. The woman, Alice, was an academic, as was my husband, Dan, and I found the story paralleled ours in so many ways.

The portrait of those around Alice as they struggle to accept her diagnosis reflects reactions of most family members. Her three children are planning to go with her to a play.”What time is the play?” she asks and is told. A few minutes later she asks again, and the three siblings argue in front of her, as if she is not there, about how to respond. Son Tom uses the don’t worry about it route—we’ll get you there. Daughter Anna insists she remember—use it or lose it. Her other daughter suggests they just tell her when she asks.

My own initial reflex with Dan was the “use it or lose it” mode. My insistence on his performing when the ability was gone created frustration for both of us, but when you watch someone dissolving before your eyes, it is hard to admit neither you nor they have control over the matter. I did not want to admit that I was losing the Dan that was my partner, the person intertwined with my life routine.  Something was going to unwind me from my own reality.

Alice’s husband struggles with acceptance of the truth of his wife’s diagnosis.  He also faces the choice of being a full time caretaker or continuing his own highly successful and demanding career.  Some readers may find him selfish, but keeping your own identity is important, and his life will continue when she can no longer be a part of it. The choice is difficult, and I submit that no one should totally abandon their own identity.

Read this book and come to your own conclusions. More importantly, gain insight into how the world must seem to the person with Alzheimer’s; how unconnected and fragmented it becomes.

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