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.