Unmarked Path

Mother is back. This last month has been a difficult journey as Mother recovered from the flu.  Today she was talking again.  I didn't think I would hear her be herself again, but she was back today.  She knew me when I walked in the room, and she said my name.  She commented on the TV show that was airing.  I was amazed.

This journey with dementia is an unmarked path.  Many have traveled the path before, and there are generalities that apply to many people, but each person's journey through dementia is different.  I had no idea that the flu could cause such profound changes, and after three weeks I was losing any hope of Mother regaining speech or interest in the world.  The virus that the rest of us throw off in a matter of days knocked her down completely.  It led us into deep shadows.  I was trying to process what kind of a life Mother might have in the depths of that shadowy place.  It was bleak.

But now the path is brighter.  She watches the activity in the hall and comments.  She is interested in the advertisement on TV for Shirley Temple movies.  She wanted to hold hands while we watched TV.  She sipped her Coke and said, "Whoa, Nellie!" as the first sip stung her throat.  She was back.

I'm profoundly happy to have her back.  The shadow has been pushed back into the corners, but I know it is still there.  Something else, some virus or fall, could send her back into the shadow and onto another unmarked path.  Now even in the happiness of the moment, I have to acknowledge that at some point it may come again.  So, I stack my mental cairns along the way trying to mark the path.  Trying not to be surprised.  Trying not to be frightened the next time it comes.

Slipping Away

I never imagined that having a bout of flu could change Mother so drastically.  In my naivete, I thought she would get well and everything would be the same.  It is not.  I thought she would still talk, as silly as her talk can be.  She does not.  I thought she would still roam the halls stealing snacks and drinking out of any cup she saw.  She stays in bed.

Seeing Mother everyday, I am aware of the changes that come over her.  Those changes have come subtly for me, but I see them.  Mother's recovery from the flu has effected profound changes.  They have shocked me, and I thought I was beyond shock.

For over a week Mother has spoken very little.  I can stay for a few minutes or an hour.  It doesn't matter.  She is mostly silent speaking only with her eyes and her facial expressions.

"Would you like tea or lemonade?"
Nothing.  She just stares.
"Would you like tea?"
A frown.
"Would you like lemonade?"
A big smile with lips pressed tightly together and stretched into a Cheshire cat grin.

No nodding.  No turning of head.  Mother stares at me closely.  Her eyes widen in pleasure as she sips the lemonade.

I sit next to Mother on her bed, and we thumb through the seed catalogs together.  I keep up a monologue about sweet peas and zinnias, sweet corn and tomatoes.  I ask which one she likes and her gnarled finger stabs the page.

"Should I plant sweet peas this year?"
Mother smiles.
"What color?"
"Red." she whispers.
"I thought maybe white ones."
Mother snarels and squints.

Mother is still with me.  She is following the conversation.  She has an opinion.  But I'm guessing about what she wants.  Trying to read her face and her eyes, I'm guessing about what she is trying to say.

Perhaps this change in coincidental to the flu, but it is still devastating.  Now Mother is locked further away.  I hug her tight, but I feel her slipping further away from me and nothing I can do will stop it.

Just an Angry Rant

I'm frustrated and my anger is on a slow simmer, but it threatens to boil over.

Mother's left hand is drawn into a tight fist.  Her wrist swells.  When the hand is opened, it is moist with the yeasty smell of decay.  After two attempts to get therapy for Mother, the doctors orders were finally followed, and Mother began therapy for her hand.  The results were so promising.  She could open her hand and wiggle her fingers.  She was even beginning to use the hand again on occasion.  The swelling was gone.

Today her hand was balled up so tightly that I could not get her to open it.  Her wrist was swollen and purple and the smell was sickeningly sweet.  When asked her to try to open her hand, she opened the other hand.  It was as if there was a mental disconnect between the fist and her brain.  I massaged it, and slowly, slowly she got it open.  I cleaned it and she moved her fingers.  All of the progress has been lost.  Her hand is the worst it has ever been.  It is essentially useless.

This shouldn't happen.  Once again I found myself in the nurse's office.  Once again the head of therapy apologized for dropping the therapy. Once again she apologized for not notifying us. Once again she wanted to reevaluate.  Once again she gave me the song and dance. Once again she is so sorry.  No.  I don't buy it.  The problem is the same.  The therapy was stopped. No one was notified. The functional maintenance plan was not followed.  Mother was simply dropped.  Is the head of therapy negligent, lazy, stupid or incompetent?  The nurse was not happy, and I am angry.

This is my sweet Mother .  She is completely dependent on someone else for everything except feeding her, and sometimes she needs help with that.  How can someone simply drop a therapy that is working?  How can doctor's orders not be followed?  How can someone not do her job and keep her job?  I am tired of excuses.  

This is the part of dementia that is sickening.  Someone takes advantage of the dementia patient.  They take the money for therapy, then drop the patient as soon as possible.  They can then charge for a reevaluation.  Not this time.  No more negligence.  If I have to check up on the therapy department every day, I will.  Mother has so little left.  I want her to function the best she can and without pain.  I just want to wrap her up and make sure she is safe and cared for.   I will not let Mother be treated this way.

When Mother . . .

When Mother stopped planting her garden, we attributed it to old age.

When Mother became forgetful and had to write everything down and still forgot and became confused, we worried.

When Mother forgot how to use her bread machine, we packed it away and bought bread.

When Mother could not clean her house, we cleaned for her and hired a cleaning woman.

When Mother stopped cooking, we were thankful that she would not burn down the house, and we packed her refrigerator with homecooked food to be microwaved.

When Mother saw men in trees and lions in the grass and threatened to shoot them all, we took her 22 rifle out of the house.

When Mother refused to bathe and dress, we forced her to go to the doctor.

She cried and denied his diagnosis.

When Mother drove to the pasture instead of going to town as she intended, we took away the car keys.

When Mother could not remember to take her medicine, we bought an automatice pill dispenser with an alarm.

We found pills all over the house.

When Mother left her hair dryer going in the bathroom while she sat on the porch, we looked at each other and wondered about a nursing home.

When Mother forgot to eat anything but chocolate, we cried.

When Mother became belligerent and fearful in the home she loved, we moved her to a nursing home close to us.

All these things and more we could do.

Now, her memories of family are fading.  Now she can not find her room.  Now she is not aware of her sometimes public nakedness.  Now there is often vacancy in her eyes.

Now there is littlw we can do.  We simply weep and hold each other by the hand.

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.