Where The Light Gets In: Losing My Mother Only to Find Her Again is the story of Kimberly Williams-Paisley's experience with her mother's rare form of dementia, called primary progressive aphasia. I recognized Kimberly immediately as the actress who played the young bride in Steve Martin's remake of "Father of the Bride."
I found it very difficult to read this account. It just hits too close to home. Although the author's mother was younger than my mother when the symptoms appeared, the family experience of the change in dynamic was heart-rending. We are facing many of the same battles. For now, my father is the sole care-giver and I really don't know how much longer he can remain in that role without some form of assistance. Every book I read warns about the health toll for the caregiver if they attempt to provide all the care themselves and do not get any personal breaks. As the child, I feel that I have no real say in how the situation is handled and that is frustrating. Even in the midst of all the present chaos with their household mold removal, my dad continues to assert that she is fine with it all. My sister and I both want to go down to help in a two-fold manner (one staying with my father and helping to purge endless stuff while the other takes my mother away from the house and distracts her with a trip or errands), but so far it has not worked out and my mother is even opposed to the idea because she feels it will simply add to their already overwhelming amount of stress.
Enough about the personal connections I made while reading. Kimberly Williams-Paisley tells of her mother's sharp mind and gifted knack for communication. Her mother worked with the Michael J. Fox Foundation, raising money for that non-profit, until she was unable to continue because her brain could no longer bring forth the words she needed. The whole mother-daughter relationship shifted when this illness was diagnosed. Kimberly struggled with her long-distance care-giving role. She tells the story well and fleshes out all of the emotional turmoil associated with losing a parent to dementia while they are still physically alive (the "Old Mom," as she calls her, is gone, submerged in a prison of brain deterioration). It was so difficult to read of how her mother became aggressive and even bit her husband when he was attempting to help her. How tragic! How devastating!
The title for the book apparently comes from a Leonard Cohen song called "Anthem." The lyrics speak of letting go of expectations and our yearning for what we think life should be. They encouraged the author to find new ways to connect, to express gratitude for what was left instead of focusing on what was lost, and to relish the small mysterious moments of her mother's presence. They read:
"Ring the bells that still can ring.
Forget your perfect offering.
There is a crack in everything.
That's how the light gets in.
While it was a difficult read, it was fully absorbing and well-written. It offered a chance to step into the shoes of someone who is further down the path I am just beginning to traverse. It reminded me that while none of this will be easy, I am not alone and can find others who can relate to the wide-ranging emotions that come with losing a parent to the illness of dementia. If you have a parent struggling and changing because of dementia, this might be a book you would benefit from reading.