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!

Visiting Mother

It is cold here and threatening snow or rain or ice, but in the nursing home it is a constant 72 degrees.  Even in the toasty rooms, Mother huddles under her blanket.  It is as if she can feel the cold, wet weather approaching. Or maybe it is just the loneliness.

When Mother sees me, she always starts calling my name over and over.  I hustle out of my coat and sit beside her on the bed as fast as I can because she calls my name louder and louder until I am at her side and patting her back.  I kiss her head and she is happy.  Today I have brought three Clementine oranges for her.  The bright orange peels fall into the trash can as she yells, "Hurry, hurry!"  The sweet orange fragrance only increases her urgency to get a section into her mouth.  I have to make her sit up to eat, and by holding the oranges away from her, she is willing to sit up to get them.  So I pass her a section at a time as I sit beside her.  She ummmms and the juice runs out of the corner of her mouth.  More.  I peel and she eats until they are all gone.  Even then she looks at my hands to see if I might still have one more section for her.  It takes a couple of times of telling her that they are all gone and showing her my empty hands before she is satisfied that she has eaten the last of the oranges.

We walk down the hall to look out the window.  Beyond the wooden privacy fence we can see the woods.  "I love the woods," she says.  She smiles and for a moment she remembers.  I don't think she remembers her woods, but she still knows that she loves the woods and nature.  It is a peaceful moment.  As we turn to walk back down the hall she asks,"Where are we?"  I tell her she is at the nursing home and it is where she lives. "I live here?"  She is amazed, but then sees her bed and her room and she remembers them.

Mother gets into bed by putting her forehead down on the bed first then crawls in on her knees and  finally flops over onto her side.  It looks awkward, but she makes it every time.  Now she wants to be covered again, and we go through the ritual of the back rub and the singing.  One song makes her sad, so I find a happy song to sing and just as quickly as she was sad, she is happy again.  Lassie Come Home is on the TV, and Mother starts calling for Lassie over and over saying how much she loves Lassie.  But Mother never even liked dogs.  Not even a little. Something about the story pulls at her heart even now.

Her eyes begin to flutter, and she is ready for a nap.  I kiss her and tell her I will be back later.  Telling her I will be back tomorrow seems impossible for her, so I tell her I will see her later, and she is satisfied.  More kisses.  More tucking her in as she cuddles and chews on her new stuffed animal.  She smiles the drifty smile of coming sleep.  See you later alligator.  This time she doesn't answer, and I make my way down the hall and toward home.

The Lights Are Gone

There has been a definite change in Mother. She is much quieter, and the light, the mischievous light, that persisted in her eyes despite the dementia is barely there.  It happened so quickly.  One day she was lively and talking; the next visit she was not there.  Oh, she smiles and can still call me by name, but something has changed.

My sister has compared it to having packed her bags and left.  You know the saying, "the light's on but no one is home."  Well, the light is just a single dim bulb for Mother right now.  The light in her eyes is much dimmer.  She moves differently too.  She may be walking down the hall and just stops.  We have to prod her to keep walking.  It is as if she has forgotten that she was walking - not just where she was going, but she has forgotten that she was even in the process of moving.  Sitting is the same way.  She will stand in front of a chair, but she forgets to go ahead and sit.  I have to keep encouraging her - bend you legs, lower yourself down, I will help you, the chair is right here.  She looks at me like I have lost my mind.  She has forgotten that she was going to sit down.

I hung a stocking for her in her room.  I hung it because I wanted her to have a bit of Christmas in her room.  But the change in her is so dramatic that I am not sure she even notices the stocking.  It used to be that she would have taken it down and chewed on it or put things in it.  It just hangs there untouched.

Yet despite the change, musics still touches Mother.  Many people come and sing and play for the residents of the home during the holidays.  Mother still enjoys the music.  She will pat her knee during a lively song and sometimes she even can remember a few of the words to sing along.  We are treasuring these times.  I am afraid that next Christmas she may not even be able to enjoy the music. 

The light, the music, the joy of life are shutting down for her.  The curtains slowly draw closed, and she will be shut out from all that she has loved.  So for now, we sing.  We sing during every visit.  Music is the piece of light we cling to, and we sing with vigor hoping to stave off the coming darkness.

Celebration

The holiday rush is upon us.  Of course, that means nothing to Mother.  Her days are blessedly the same.  It is the routine, the sparseness, the dependability of day after day that gives her comfort.  Big changes can be frightening for her.  Sometimes just walking with me to the Coke machine that is located off of her hall is scary for her. When we walk to the lobby to look at the fireplace and the electric logs churning away the same pattern of "flames," she wants to know where she is.  Sameness.  She leads a narrow, circumspect life.  She lives for meals and for the familiar faces of family.

Last night was the holiday family meal at the home.  The staff had dressed Mother in a Christmas top, but she had not really noticed the preparations and had no idea what was going on.  For her, it meant that we would eat together, but even then the most important thing was that it was dinner time.  We sat at the long tables covered with the holiday red plastic table cloths watching the swirl of adults and children there to eat with their loved ones. Mother watched the babies.  She has always loved babies.  But when her tray came the only thing she noticed was the cup of ice cream and the cobbler.

All concept of party ended there at the Christmas plate before her.  Her total focus was on her food.  She would smile once in a while, and she used her fork when I reminded her.  But that spoonful of ice cream became her total world.   Even when she mixed it with her mashed potatoes, she was completely engrossed with her plate.  That was her party.  The pleasure of eating in that one moment.

How narrow her world has become.  To have only a vague awareness of celebration.  To see the faces of family and be unable to interact beyond a smile and a comment.  To concentrated on the next bite of food and have that be your best pleasure and celebration. To exist only for the moment.

We left having enjoyed the time with her and the efforts of celebration provided by the home.  But deep down, I feel hollow.  Mother was there, she smiled, she howled with pleasure.  But there was a sense on incompleteness because she wasn't fully there,  the smile was vague, and the pleasure was only momentary.  Sometimes we wish that the Christmas rush would be over.  But when I think of all that the holiday season demands, I am thankful that I am aware.  I am thankful that I can celebrate and enjoy the multitude of activities that I share with family and friends.  The alternative to awareness is so narrow and small, and I mourn that Mother has lost the sense of celebration.

Thanksgiving

Give thanks

• Mother fell this week, and she wasn't hurt.  No bruises or bumps or breaks
• Mother still knows us for the most part.  She gets us confused, but she recognizes that we are her family.
• Mother is happy most of the time.  Most of the time she even likes where she lives, and she thinks she has a good life.
• Mother can still walk.  She may be getting closer to using a walker, but she is still mobile
• The staff at the nursing home are kind, and they do their best to meet her needs
• Most of the time, she remembers the good times.  There are dark days when unhappy memories haunt her, but most of the time her memories are happy.
• Mother enjoys the television.  What did they do with dementia patients before television?  Mother can watch the same episode of Andy Griffith over and over, and it is new and exciting each time.
• Music is still one of Mother's greatest pleasures.  She no longer gets up and dances, but she sways her hips and smiles.

• Life continues and it is good.