Welcome

This blog is intended to be a part of my personal journey as I watch my mother journey through Alzheimer's disease. I am writing to help me work through the grief of this long disease, and I hope that my thoughts might help you also.

Saturday, September 28, 2013

Dignity Lasts

Mother's behavior is deteriorating once again.  As a person progresses through dementia, there is a time when she may be accusatory or destructive, hallucinatory or aggressive.  For Mother, who at one time or another has been all of the previous, these stages have passed. She has been more docile and happy.  Instead of throwing things at windows and doors trying to get out, she finds comfort in her room.  She sometimes gets confused just in the one hallway behind locked doors, which is her Alzheimer's unit.  We thought the wild behaviors were behind us.  We thought she had reached a quiet state where she smiled and was happy.  That is not to be.

Once again, as the tangles in her brain increase, odd behaviors emerge.  Some are harmless.  She wants to touch her nose to our noses or to the table in front of her.  Some are more worrisome or dangerous.  She fights being led to the bathroom.  She tries to sit down as she walks, and she wants to scoot on the floor.  It is as if she slips more and more into infantile behavior.

Yet through all of this, we and the staff at the home try to maintain her dignity.  But it is difficult.  How can having a teething ring because she chews everything in sight - clothes, papers, towels, flowers, tissues- be dignified?  How is scooting on the floor and screaming dignified? How is trying to lap up a drink because you forgot how to pick up a glass dignified?  How is eating with your fingers because you don't remember how to use a fork or spoon dignified?  No amount of physical or occupational therapy, no amount of talking, no amount distraction can make those things dignified.

Still, there is dignity.  There is the deep love and respect for the woman Mother was.  There is respect for her being the kind of parent who made us behave in public, who disciplined with love, who taught us tolerance for those different from ourselves, who gave us self-confidence, who taught us faith, who taught us to laugh at ourselves and who loved us no matter what we did - good or bad.

It is love and respect for who she was that allows me to gently say no when she bites, to feed her when she tries to use her fingers to eat soup, to encourage her to stand up straight and tall when she wants to sit and scoot.  Perhaps dignity is something that remains even when our mind has gone because we built it long ago.

Friday, September 13, 2013

Fragrance Past

They say smell is a strong trigger for memories.  I believe it is true.  The smell of a gas cook stove and bacon sends me right back fifty years into my grandmother's farmhouse kitchen.

Mother's mother died young, and Mother put some of Grandma's clothes in a plastic bag to keep.  One day I found the bag and asked Mother why she was keeping the clothes.  She confessed that from time to time she would open the bag to smell the clothes.  Then she let me smell them.  The clothes smelled like my grandmother, and Mother was keeping that smell, that part of Grandma locked up for as long as she could.  It was a comfort to her.

Now when I visit Mother, I find myself smelling her hair and inhaling her scent when I hug her. It is the one part of her that hasn't been lost or become changed beyond recognition.  Her smell, despite the nursing home and the institutional soap, is still the same.  It is still her.  I can close my eyes and remember the Mother who comforted me as a child when I was sick or afraid.  I can still smell the Mother who walked in the woods.  She still smells like the Mother who made my clothes and ironed my dresses for school.  I can still smell the Mother who kept me from wiggling in church by resting her hand on my knee.

The smell is the same, and sometimes, for just that briefest of moments, I can have my mother back. It is a comfort to me.