Alzheimers has not taken away my mother’s light

Last Tuesday, much of the world was walking children to school, some for the first time.  It’s a tough day.  It’s also an exhilarating day.  Kids are going to grow, risk, make mistakes, learn how to get along.  Or not.

Last Tuesday, my baby sister (who is 45 and many years younger than I), my first husband and I were taking our mom to a long term care home.

For nine years she’s been living with my sister, first in a large apartment on the lower level, and more recently in a single room next to my sister and her husband.

Our Mom has Alzheimers Disease.  So many of us either have Alzheimers or are living with and loving (and losing) a person with this disease.  It takes the mind away from its victim.  For some it starts slowly and like waves on rock, it forces its way into every part of a person’s being.  For others, it starts quickly and moves quickly, crashing its presence onto previously bright people.

I think the hardest part for families with Alzheimers is the caring and loving of a person who is still there physically but who begins to disappear.

I can’t remember when Mom stopped phoning.  But she has.

In her apartment we’d set up a full workshop, as she expected us to do.  She has fabulous tools, and a great workbench.  My sister was happiest when she’d open the apartment door and she could hear the radio and the sander at the same time.  “All is good,” she’d phone and report.

I can’t remember when Mom last built something.

There was an office in her apartment, too.  It held a fax machine, typewriter, boxes of greeting cards, address book… that kind of thing.

Mom has stopped sending birthday cards, paying bills, or anything else.

As we drove over to her new home, Dufferin Oaks, in Shelburne, a tear settled on her left cheek.  “Do I have to live there?” she asked.  “My heart contracted and wound itself into a tight stick.”  I kept my tears just above my tonsils, gripped tightly.

“This has to work for all of us,” I said.  You won’t be staying if you, and we, aren’t happy.  “We want you to sleep here and to have your meals here.  We’re worried about your nutrition and personal care.”  But you’re still coming for weekends in Barrie and to the cottage.  You’re still going to Ottawa with your grandkids.  You’re still taken out for coffee with your friends.

While Mom and I hovered over a coffee table book about the Queen Mother in the lobby of the home, my first husband and my sister unloaded cars and moved Mom’s furniture up to her room.  Mom and I enjoyed our coffee (a love we share) and reminisced about Prince Edward and Wallis Simpson and how their marriage changed forever the life of King George and his daughter Elizabeth.  While we talked, she sort of remembered these things, her voice flitting over one word and then another and then grabbing attention of Queen Elizabeth at her coronation.  And the carriage!

It was time to go up.  We walked slowly along the corridor, admiring photographs and plants.  She pushed the button on the elevator.  We went to the second floor, an unsecured Alzheimer’s ward.  People came to shake hands and say ‘welcome.’  We walked along the corridor.  And there on the right was her room number and a shelf with a few important knicknacks… a brass model of the plane she used to fly, her beloved rocks of mica and feldspar and quartz and granite.  And strips of birch bark.  My mother is a woman of the land.

She looked into her room.  It looked exactly like the room she’d walked out of two hours earlier.  Everything was exactly as it had been, her crossword puzzle book open on her table, pencil and ruler in place.  Her antique wash stand, her own mother’s little table, her bookcase and photo albums of a life extremely well lived… it was all there and all in place.

“Well, just look at my room!” she said, gleefully and she sat down at the table and looked out a big window.  “And look at my view!  It’s just beautiful!”

She looked up at us.  Like she’d always lived there.  But she’s coming with me this weekend.