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.

It Is All Relative

There is a new resident on the Alzheimer's unit.  Almost everyone who begins living on an Alzheimer's unit experiences a period of adjustment.  Some people sleep, some cry and others are more aggressive.  Mother screamed and hit and tried to get out.  She picked up furniture and threw it and beat at the doors.  Before long, she became more passive with her aggression.  She threw water on the staff and would refuse to bathe.  It was many months before she adjusted. 

What amazes me, is that residents who have lived on the Alzheimer's unit for a while are so tolerant of the behavior of new residents.  This weekend the new lady on the unit was cussing a blue streak.  She waved her glass around at lunch and screamed, "That's my g-- d--- pillow!  Give it back you s-- o- b------!"  Of course there wasn't a pillow in sight, but she ranted on.  Mother just rolled her eyes along with the other residents who are still cognizant enough to know that the woman was ranting.

Mother and I were walking to her room when they wheeled the new resident out of the dining room.  She was still cussing and threw her glass of water on another resident.  She kept screaming, "  Get out of here you g-- d--- s-- o- b------!  Get out!  I am the king, and you have to do what I say you g-- d--- s-- o- b------!"
 Mother said, "She is cussing everyone out."  I told her yes, but that the lady didn't know what she was doing.

"Well," Mother replied," At least I haven't lost my mind."

It was all I could do not to laugh.  I just hugged Mother and thought to myself, it is all relative.  That's the thing about Alzheimer's, the residents all think it is the other person who is crazy.  But maybe there is a lesson in that for all of us.

Very Confusing

My sister and I cleaned Mother's house this weekend.  While she lives at the nursing home, we maintain her house the best we can.  Besides the dusting and sweeping and washing the rugs and towels, we cleaned a closet we had not gone through before.  It was mostly full of towels and sheets, but on the highest shelves we found linen place mats, dresser scarves and old table cloths from the 1950s all neatly starched and pressed. Tablecloths on the right, dresser scarves in the middle, place mats on the left.

On the lowest shelves we found the same kind of items: a large linen tablecloth and linen place mats and napkins.  But these were messily folded, unironed, and stuffed into the shelf all together.  We  realized that the closet was a reflection of Mother's mind.  As the dementia took hold, she could no longer keep her things crisp and neat.  Like her mind, the linen was wrinkled and wadded up. She tried to place things as she always had, but as she would say, "It's all very confusing."

 There is no clear light within the mists of dementia. Today as I visited Mother she was clinging to bits of herself.  Trying to hold on.  She repeated my name over and over.  The chocolate candy I brought her ran in a long brown drool down the side of her mouth as she smiled.  I washed her face.  She repeated my name.  Hanging on.  Trying to stuff the contents of her life into a closet that has no organization and becomes "very confusing."

All Smiles

I remember Mother's smile as it used to be.  She smiled often, and when she smiled her eyes lit up.  It was a smile full of love, or humor, or teasing, or joy.  Her smile welcomed us and held us in its warmth.

Today Mother still smiles, and sometimes it is still warm and full of joy.  But not today.  Today her smile was pasted on.  It was big and forced.  She smiled because she couldn't connect with the conversation.  She couldn't relate to the pictures of the woods - the woods she has loved.  She only knew that she needed to smile and nod.  She wanted to participate.  She wanted to be social, but all she could do was smile.  But her forced smile only transmitted her confusion.  It became evidence of how lost she is.

Mother drifts deeper into her fog with a brave smile on her face. Her life is like the masks of comedy and tragedy.  Her tragic situation is covered by a broad and fake smile.  Tragedy, but all smiles.