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.

Moments of Lucidness

"How much does this cost you?"  That was the question Mother had today.  She was lying in bed and chewing on her skin.  She grabbed the loose skin at her wrist between her teeth and pulled it out.  She repeated both the question and the chewing.  It struck me as such a typical Alzheimer's moment. 

She had been lying there thinking in some manner about the cost of her care.  She has no sense of money anymore.  She will tell you that a soft drink costs one hundred dollars or that a car costs twenty-five dollars.  It is all jumbled in her mind, yet she had a moment of awareness that her care in the home cost money.  She was worried.  I told her she had enough money and not to worry.  She smiled and kept gnawing away at her arm. 
I put the small terrycloth wrist band on her arm so that she could chew that.  She told me it didn't taste good.  She pulled if off and went back to chewing on her arm.  (Last week I had to throw away a shirt that had a hole in the shoulder from her chewing.)

"My inheritance will pay for this."  Inheritance?  There is no inheritance.  And truth be told, she doesn't have enough money for her care.  But I cannot tell her.  It would only worry her more, and the chewing would increase.  She is just lucid enough today to think about money and care, but not lucid enough to know that  there is no money or that she is chewing away her clothing and her arm.

Last week she grabbed my hand and pleaded, "please take care of me."  Of course I will.  I do in the best way I know how.  There is no road map to follow, so I do the best I can from day to day.  I tell her not to worry.  She will be ok.  She doesn't have to worry about the cost.  We will take care of her.  Somehow.  It will work out.  

Faded Memories

Mother's memory is becoming a shadow.  She has only lingering glimpses from her past.  Like faded wallpaper slowly peeling away from the sure structure of the wall, her memory is peeling away from the structure of her life.  She can no longer share the memories large or small from her past.  She can only ask questions.

"When I was little, we had popcorn and Pepsi every Sunday evening while we watched TV," I say.

She smiles and sips her Pepsi through the straw because drinking from a can is difficult and says, "Was it good?  Did we like it?  Was it fun?"

I've stopped saying "do you remember."  I just tell her how things were, and she asks questions.  I tell her how much she enjoyed popcorn or old movies or working in her garden.  Sometimes a light of recognition comes on.  Just a faint remembrance - a shadow that flits across her mind.  She will nod, but just that quickly the memory is gone.

I visited a museum once where people walked in front of a light that would capture their shadows.  They could step away and see their shadow lingering on the wall, but very quickly those shadows faded and nothing was left to say that they or their shadows had existed.  Mother has only the shadows of her life left, and those are quickly fading.

Steal Away

There is a new normal for our visits with Mother.  We are learning to tolerate more aberrant behavior as her mind becomes more scrambled and her behavior becomes more unpredictable.  It amazes me that her behavior, which I would have found so horrifying a few years ago, has become just a blip on the screen during my visits.

Yesterday was a good day.  Mother was up and looking out the window, so I asked if she wanted to go outside.  She did!  This is the first time in a while that she was willing to go out and get some fresh air.  I walked with her arm and arm down the sidewalk through the fenced area to the bench where we could see trees and sky.  As we walked, she turned to me and said, "We are a newlywed couple just strolling along."  When I walk with her I always have her grab my arm because she is somewhat unsteady on her feet, but yesterday she was hustling along as fast as her little shuffle could take her.  We sat on the bench for a bit and looked at the thunderheads building up.  She was enthralled with the big, bright clouds and shouted and pointed.  Then just as suddenly, she said, "Can I look down your dress?"  She pulled at my neckline.  I told her no, that it wasn't polite.  She turned away and asked again and pulled at my clothing.  The third time, she asked and said, "Please, please, please, please, please!"  Not only is that bizarre behavior, but it was something I now take in stride because I know she doesn't know what she is saying.  I distracted her with the clouds.  She said, " I will just steal away."  We sang Steal Away to Jesus her voice soft and sweet as she watched my mouth to see what the words were.

A visit so horrifying and so sweet at the same time.  I watched her look at the clouds so innocently, yet I cringed at her pulling at my clothing like some old letch.  How can her mind be both?  How can she jump so quickly from wanting to look down my dress to singing Steal Away to Jesus?  Maybe more horrifying is that that behavior is possible for any of us when disease strips away our inhibitions.  We cringe not just because the behavior is so strange, but deep down we must admit that it is inherent in us all.  Mother, any person with Alzheimer's, shows us what our primitive selves are like.  The hopeful part is that no matter how base and ugly some of what we do is, we still have some part that can steal away and sing.

Bit by Bit

The thing one must understand about Alzheimer's is that it is a terminal disease.  That sounds like a no brainer, yet the disease steals Mother in such tiny bits that sometimes the the major change is upon me before I realize it.  She has ups and downs, good weeks and bad weeks, days of fear and days of joy, but  I realize that my definition of a good day has changed.

It used to be that a good day was one where we could have an actual conversation, be it ever so brief.  Now a good day is a day when she smiles.  It used to be that a good day was getting her teeth flossed and brushed every day because she wanted to have a clean mouth.  Now a good day is getting a few of her teeth flossed once or twice a week because she fights the whole process.

So my sisters and I have to make choices.  End of life choices, although the end of life might be years away.  Many families have to make gut wrenching choices about care and treatment, but for many that process takes place over a few hours or days or weeks.  With Alzheimer's, we make those choices over and over and bit by bit for years.  We have to make a series of gut wrenching decisions, and each one seems to be worse than the previous one.

First taking the car keys way.  That was difficult, but looking back, it was a piece of cake.  Getting Mother to the home was traumatic for everyone because she went kicking and screaming - literally kicking and screaming.  That was just the beginning.  Now we face the difficult choices of stopping  or changing some of her treatment, but that too will come bit by bit and with each decision comes gut wrenching uncertainty.  Even though we consult with the health professionals, we wonder if we are making the best decisions for Mother.  It is difficult.  We must do it; we just have to do it over and over and bit by bit.