Leaving the Ship

There is a new woman at the home.  She is in the first stage of adjusting to living in a nursing home.  She is confused, and she wants to leave.  She is wandering the halls asking everyone if she is "free to leave the ship."  Another resident replies," This isn't a ship.  This is a building.  Your folks put you here, and you have to stay until they come and take you out."  The woman looks blank and wanders toward the end of the hall and rattles and shakes the door saying, "I have to get out of here."

I remember that stage well.  Mother was more angry than the new woman.  Not only did she rattle the door, she picked up chairs and threw them.  She tried to break the glass.  In the first place she lived, she tried to climb the fence in the outside area.  She pulled a patio table to the fence, climbed on it and tried her best to get over the wrought iron fence.  Thank goodness Mother was too short to do so.  When she first arrived where she now lives, she did the same thing.  She couldn't climb over an outside wall, but she tried to climb over a wall in her unit that doesn't quite go to the ceiling and adjoins the main dinning room.  She stood on the sofa and tried her best to climb the wall desperate to escape.

At first, we tried to take Mother out of the home for short drives.  We thought it would ease her transition. She got so confused when we did.  Once she thought she was Vietnam.  Often she thought she knew the people in every car that passed us and it would upset her. Sometimes she thought we were in a different town.  Finally a nurse told us we were not doing her any favors.  It was easier on her to just stay in the home.  It was less confusing.  In our own way, we were denying that she was on that ship that only sailed farther and farther away from normal life.

No is "free to leave the ship" once they are in the Alzheimer's unit.  It simply sails off into the fog.  No amount of beating on doors or throwing furniture  or climbing walls can facilitate an escape.  And no matter how much we want to, even the "folks" can get you out. It is a one way trip.

Sunny Days

I grieve for Mother and her condition most on sunny days in winter.  She is beyond knowing one day from another; she is beyond caring about where she is unless it is at the table or in her bed.  Her world is so contracted that even when she looks out the window, which she often does, she sees  the grass and the trees and the birds as if they were photos.  There is no connection to them, and this is such a change from the Mother that used to be.

On warm winder days, Mother would sit on her front porch and watch the birds.  She had an old pine cone that she used as a suet feeder.  She would make a concoction of lard and peanut butter and roll it into small balls and stuff it between the spines of the pine cone.  The birds loved it, and she would spend hours watching them eat at the pine cone and at the feeders scattered over the yard.  She could identify each bird, and by reading and watching, knew their habits and their calls. Huddled under the wool patch worked quilt, she would drink her tea and watch and enjoy. The birds were a joy for her.  Being outside on her porch was essential for her.

I grieve those times for her.  Now she looks out the window and says, "I saw a bird."  She is afraid to be outside most of the time.  "Too scary,"  she declares.  She no longer hallucinates about men in the trees, and lions and snakes in the grass, but she has also lost her enjoyment of the outdoors, the sunshine and the birds on a sunny winter day.

Vinegar and Brown Paper

Jack and Jill went up the hill
To fetch a pail of water
Jack fell down
And broke his crown
And Jill came tumbling after.

Up Jack got
And home did trot
As fast as he could caper
He went to bed
And mended his head
With vinegar and brown paper.

When I was a child, Mother would gather me in her lap and read the Mother Goose nursery rhymes to me.  I learned them all by heart with her reading them and talking about them.  We knew them all:  Peter, Peter Pumpkin Eater,  Hey Diddle, Diddle, Mary, Mary Quite Contrary,  The Old Woman Who Lived in a Shoe and on and on.  I loved those moments nestled in Mother's arms, laughing and talking and enjoying the rhyme and rhythm the love and laughter.

Mother can still say many of the nursery rhymes with me.  We site close together these days with my arm around her shoulders, and we say the rhymes together.  When she can't remember, she watches my mouth and says the words just a split second after I do compensating for her loss of memory.  But sometimes she remembers the rhyme all by herself.  She will throw her head back and yell the line in pure delight, laughing as we used to do those years ago.

But as I leave the home, the moment of sharing still with me, some of the rhymes haunt me.  Humpty Dumpty falling off his wall and all the King's horses and all the King's men can't put Humpty Dumpty together again.  The dementia.  No one can put Mother together again.  So many parts of her mind are shattered beyond repair.  And much like Jack, even modern medicine seems like vinegar and brown paper in the face of Alzheimer's.  It is virtually palliative care, long term and sad. A patch that gives the impression of something being done, but the injury is way beyond vinegar and brown paper.  But that is all we have, so sometimes, like one of the King's men, I come with only a rhyme to try to salvage a bit of memory for Mother.  I know it won't stop the progression of the disease, but time together, sharing something of the past is my vinegar and brown paper.  My hopeless attempt to keep Mother from shattering further.

Finger Exercises

Stand up like soldiers!  Bow down!  Stand up straight!  Bow down!

That's the routine I try to get Mother to do with her left hand.  It is clenched tight most of the time, and getting her to open it and move her fingers is difficult.  The doctor has ordered physical therapy and a brace for her, but so far neither has materialized.  In the meantime, I try to think of ways to move her hand that will help her use those muscles before they totally freeze up.

The first step is getting her to open her hand.  I am not sure how much feeling she has in it because I can tap her left hand and ask her to open it, but it is the right hand that she moves.  Often her left hand is purplish and swollen when I visit.  Once I can get her to open it, I usually place it opened on my knee and gently rub the top of her hand and her wrist.  Sometimes she says it feels good; sometimes she says it hurts.  I will have her flex it gently, and I help her.  Occasionally, the hand smells.  It is susceptible to yeast infection if she always keeps it closed.  I wash her palm and file the nails so that they are very short.

Once she has it opened, she will use it a bit, so we begin with straightening the fingers (soldiers tall) and then bending them at ninety degrees (bow down).  She loves the soldiers tall and will try her best to get them vertical and straight.  Next we press the finger tips of the left and right hand together.  I tell her to make a steeple of her hands.  She smiles and does this, but she likes it best when we do it together, her left hand pressing against mine. To her it is like a tug of war, and she presses her lips together and pushes and tries to push my hand back.  She is strong, and although she has little flexibility, she can push with strength!

I also work on fine motor skills by having her touch each finger to her thumb.  This is difficult for her, and she often uses her right hand to help her. Then I have her slide her thumb down each finger.  This is almost impossible for her to do.   Just in the last month she has lost a great deal of fine motor skill in that hand.

I tried having her squeeze a stress ball, but she wants to eat it and tried to get a big bite out of it.  So no more stress balls.  She can squeeze an aluminum drink can in half, so I am not concerned about her squeezing ability.  I am more concerned that she use her fingers.   

It is one more thing we do to keep her going.  To keep her from slipping away bit by bit.  I know it is a losing battle, but it is one I am willing to fight.  So soldiers tall!