Monday, November 30, 2009
Lewy Body Dementia is a plunderer of memories. I HATE what IT is doing to my dear mom. But in her diminished state, I am finding a crack in the sadness and loss through which Grace shines through, forgiveness is no effort, beauty returns, hope is renewed and faith returns anew... all of this- a potpourri of love. And my dear father, her life partner of over 50 years is discovering and uncovering and loving and learning. God Bless them both. It has been SOOOO difficult to post here for reasons I can not find words to explain... I feel guilty to not bear better witness to this journey of which I am a part, but then I read a friends post on Facebook today that I liked very much- "Wisdom is avoiding all thoughts that weaken you." I AM there for them in the most present way I know how. I wish I could take away the profound sadness that must be my fathers constant companion. Praying to God to help do for me (and for them) what I can not do for myself. Mom's facility for speech is fading, which only makes her smile that much more special.
Sunday, May 17, 2009
After coffee, off to Westport to pick up my friends camcorder again. It was a blessedly still, quiet, sky-blue day, perfect for a drive to the Berkshires, or anywhere. Me, myself and my simple loneliness...
I had spoken to people about this visit. About how my dad called a few days prior saying mom, (long pause, big sigh)... was really declining; about how the sadness in his voice, its fragile timber, sounding foreign, almost alien, frightened me. Yet the connection would not be denied. God is the grease, we are the wheels. He must know this is not easy for some of his children. This new territory of despair, and fear and hope and grief and letting go. Grief has a mind of her own. And for all the work people have done studying her, work for which I am becoming ever so grateful, to experience the fullness of her bosom up close and personal, that is the realm of the poet.
I walked a mile with Pleasure,
She chattered all the way;
But left me none the wiser
For all she had to say.
I walked a mile with Sorrow
And ne'er a word said she;
But the things I learned from her
But oh, the things I learned from her
When sorrow walked with me.
--Robert Browning Hamilton
I spoke with a director at the Lewy Body Dementia Association prior to my visit and found out that when my mom thinks my dad is someone else (this visit she thought he was one of her caregivers' sisters who happens to be African American which my dad is not, nor is he female), there is a name for that- Capgras Syndrome.
The Capgras delusion (or Capgras syndrome) is a disorder in which a person holds a delusional belief that a friend, spouse or other close family member, has been replaced by an identical-looking impostor. The Capgras delusion is classed as a delusional misidentification syndrome, a class of delusional beliefs that involves the misidentification of people, places or objects. It can occur in acute, transient, or chronic forms.