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.

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.

Remebering Too Much

Sometimes stimulating Mother's memory is worse than watching her forget.  This week I found a coffee table book with beautiful pictures of our part of the country.  It was filled with photos of the places close to her home and scenery from the region that were stunningly beautiful.  I thought she would enjoy the book, so I took it with me when I visited.

Mother was in a quiet mood and just wanted to lie on her bed, so I sat beside her and in bedtime story fashion I held the book while we looked at the pictures and talked about the places.  She got excited about some of the scenes and even seemed to remember some of the places, or at least she reacted to the names when I told her what the photo was. Then what seemed like a pleasant experience just broke my heart.

She started crying and howling as she does when she is upset.  "I'm getting homesick," she said.  I closed the book, but it was too late.  The beautiful photos had caused her pain, and worst of all it caused her emotional pain.  I moved the book out of sight and diverted her attention to her new wind chimes.  Like a small child she was easily distracted, but the experience has haunted me.

Some memories are still with her, and she is still aware enough to know that she can't participate in those places or times again.  It is difficult to know where to go with helping her remember pleasant times, but I have found one line I will not cross again.  It is okay to remember briefly a time and place from the past, but immersion in it is only painful for her.  I can remember, and I will remember her cries of homesickness for a long time.

Happy Birthday to Me

Mother just had a birthday.  We had talked about it for days, but when the day arrived, she didn't remember that it was her birthday.  We arrived with cupcakes, presents and some of the family to celebrate with her, but her room was empty.  I went looking for her and found her sleeping in another room in someone else's bed.  But she roused, and I told her it was her birthday and there was a party for her in her room.  I sang Happy Birthday to her as we went down the hall.  When we arrived at her room she announced, "Happy Birthday to me, me, me, me, me, me, me" while beating her chest and smiling.  We sang again and ate chocolate cupcakes.  Like a small child, she had frosting all over her face and hands and thoroughly enjoyed each bite.  We called my sisters so that she could talk to them, and then she opened her present.  By then, she was tired, but happy.  I know that by the time we were in the parking lot she had probably forgotten all of it, but she was so happy.  When we gave her her package she said, "My family is my best present."  That is why I try to visit almost everyday.  She forgets so easily, but she still remembers her that her family is important to her, and I want to her have those moments as often as possible.

Piece of Mind

The brain, the walnut shaped organ that allows us to be, is a mystery.  I try to read what I can about brain function, growth, learning, etc., but no matter how much I think I might understand, how the brain actually works in any individual remains a mystery to me.  Mother's brain, ravaged by dementia, is even more of a mystery than the brain of my thirteen year old grandson.  My grandson's teenage brain at least follows a pattern that is recognizable; Mother's brain snaps and flashes in ways that leaves me grasping for some kind of pattern or for some kind of sense.

Yesterday, Mother was listening to a recording of my youngest grandchild singing.  He had learned a song at Bible school and sang it so sweetly that I recorded it and played it for Mother.  Her face lit up as she listened.  I told her who was singing and what the song was.  It was an old song, and she was familiar with it.  She mouthed the words as she listened.  Then she looked up and said, "And he is only six years old!"  How did she remember that?  He had just had a birthday, and most of the time she doesn't know who he is or who his parents are.  We had told her about his birthday, but it made no impact- or so we thought.  Somehow, that tiny piece of information stuck in her mind and for that moment, she could remember.

I told her she was right and reminder her that she had a birthday coming up soon herself.  "When is your birthday?"  She gave me a date.  It was wrong.  She has no idea when she was born or how old she is.  Yet for that one split second she could remember that her great-grandson was six.  Her mind is in pieces, and we never know what piece will be working.  Neither does she.  How terrifying to live with only random pieces, yet we keep feeding her broken mind information.  Who knows what she might remember.  It is a mystery.

Best of Life

We tend to obsess about so many things in life.  We focus on those big items that tend to weight us down:  bills, problems at work, winning a game, deadlines, weeds in the garden, etc.  But what I have learned from Mother is that the very small things in life can mean the most.

A clean face can bring sheer happiness.  Mother loves to have her face washed.  After she brushes her teeth I warm the washcloth in the hot water and gently wipe away the stress from her face.  She always asks me to do her eyes. Gently, gently I clean the sleep from her eyes.  Gently, gently I wipe her cheeks and forehead.  She tilts her face up and makes a low mmmmmm in pleasure.  Three times we go through the process and then pat dry with a towel.  She always says, "Thank you, mama."

She returns to her bed, and I apply a thin layer of baby oil on her face.  She has dry patchy pre-cancer on her skin, and the baby oil softens her skin.  She say, "On my nose, on my cheek."  Then we move to her arms and hands gently massaging her thin, dry skin.  "Oh that is so nice, so nice."  The sweet smell envelopes her.

Then it is time for a Coke.  "Do you have a Coke?" she asks, and I make a trip to the machine for a Coke.  She sips it from the can using a straw.  "Hmmmm!" followed by a big belch.  She smiles.  I mean really, can life get any better!

"I'll Protect You"

The power of human touch and consolation never ceases to amaze me.  In the smallest ways, even those with dementia can help each other.  Today I found Mother in the lounge watching a movie with a male resident who has somewhat better cognition than Mother has.  As usual, when Mother saw me she called my name and grabbed my hand.  I held her hand, and we all watched the movie.  It was a film about a storm at sea and two boats were being tossed on the waves.  This frightened Mother, and she began howling and crying, "I'm going to die."  I got up and changed the channel, but the man reached over and patted Mother's knee and said, "Don't cry, I'll protect you from the bad things."  Mother looked at him and said, "You'll protect me?"  He said yes, and she was fine. 

He had just patted her knee like you would do for a frightened child.  He smiled and was calm and she responded.  It was so sweet, and so human.  One person reaching out to comfort another and that person accepting the comfort.  That man can not even take care of himself, but he was willing to reach out and offer to protect.  That is being truly human.  How often do we try to avoid the pain of others.  How often do we ignore the terror that others feel.  All we need to do is pat someones knee-even metaphorically- to bring comfort.  And anyone can do it.  Anyone can offer comfort.

Lonesome Valley

Mother appeared to be sleeping.  She was curled on her side and covered with her dusty blue comforter.  Her eyelids fluttered and she saw me.  It was just a stare for a few seconds, and then she said my name.  I sat beside her and stroked her short gray hair.  I always think how much she hated "old ladies with short hair."  But cutting her hair was just another loss due to her dementia.  Her longer hair became tangled and unruly.  Now, while stroking her sweet head she said, " I'm scared.  Don't leave me.  I'm afraid to die.  I'm dying."  She looked so defeated and scared.  What could I say?  I am utterly helpless.  I can't ease her disease.  I can only hold her hand and stroke her head. 

I assured her that she would live today and tonight and tomorrow. 

"Really?"

"Yes, you will live today, and tonight and tomorrow."

It was enough.  She asked me my name.  She needed to be sure that I was who she thought I was.  She closed her eyes.  I sat with her.

There is an old song that says, " You've got to walk this lonesome valley.  You've got to walk it by yourself. Oh, nobody else can walk it for you.  You have to walk it by yourself."  Mother always loved that song, and this is her lonesome valley. But somehow I think we can walk in the shadows along with her.  It is not our journey, but we watch her journey and hold her hand and stroke her hair through the lonesome valley.

And Now This

There are all kinds of degradation with Alzheimer's.  Mother faces them daily and is mostly unaware of them.  But sometimes she knows that something is wrong and she is sad.  That is how I found her today.  She was very quiet and would hardly talk as she lay in bed curled up and staring out the window.  I asked if she was ok and she said yes, but as I pressed her she said, "I did something wrong and got in trouble.  They hurt my feelings."  That was all she could tell me, and so we talked about past times.  She laughed and got caught up in the story line making up a plausible story to go along with the real past event.

But now this.  A phone call from the home.  As often is the case, Mother can't remember where her room or her bed is.  She will crawl into any bed she thinks is hers.  I often have to go down the hall checking the beds to find her.  Today she had laid down in her roommates' bed.  The roommate got upset and spanked Mother with a shoe.  Spanked her hard enough to leave a welt on Mother's rear end.  The roommate was moved immediately.  But that is the problem with dementia.  People no longer have control over their actions and responses. 

Mother has been on the giving end of such things, but not to the degree of hurting someone.  She has thrown water on people, verbally threatened others and thrown things.  It just grieves me to know that someone hit her and hit her hard.  It also breaks my heart that she thought she had done something wrong but had no idea what it was.  At some core level she knew life was out of whack, but she couldn't tell me what it was.

I hate this disease and what it does.  The loss of control of ones body and mind is bad enough, but it also causes the victims to lash out and to sometimes become violent.  Now Mother has had to endure a physical attack, and I couldn't protect her from it.  Tomorrow she will not remember it at all, but I will always remember and the bruise will be on my heart for a long time. 

The Living Dead

I have a grandson who is into zombies.  He knows all about them and often relates "information" about zombie behavior.  He knows it is fiction, but for some reason he and many others find the zombie world fascinating.  I do not.

To me the world of the living dead is the nursing home.  Today Mother insisted that she was dead.  No amount of logic or reason could convince her that she was alive.  "Did the undertaker make my face look good?" she asked.  What could I say?  "Yes, you look lovely."  She was satisfied that she looked good, but she still instisted that she was dead.  And perhaps she is right.  She and the other residents are living a kind of half life.  They are not physically dead, but like zombies they roam the halls with their ravaged minds and bodies.  It is twilight living.  Neither here nor in the beyond.  They live, but they are dead to the world.

World and local events mean nothing.  People come and go, but often who those people are depends on the momentary workings of the dementia mind.  Today I was daughter, mother and grandmother to Mother at various points of the visit.  Her world shifts and sways and her confusion grows.  Zombie? No, but part of the living dead - sometimes.  But there is no need for violence or horror either.  Only hugs and kisses, singing and praying, photos and remembrances can restore life. 

Did the undertaker do a good job on her face?  It mattered to Mother today, and just knowing that she was lovely to me was all it took to make her just a bit more alive.

Lost

Mother is lost in the fog of her ever diminishing memory.  Her focus of thought is becoming ever more narrow.  Yesterday as we sat in the living area by the front door watching people come and go, Mother said she wanted to talk about the family.  I asked her to name we girls, and she could.  I asked about her brothers, and she named them.  But the names of her sister-in-laws, her grandchildren, her nieces escaped her.  Even when I told her who they were, she just looked at me like she was very unsure of those names. She seemed to even be unsure about the relationships.  It was if she knew she has grandchildren and great-grandchildren, but she doesn't know how many or who they are.  The fog is thick in her mind.

It is impossible to "visit" with her now.  Even relating the events of the day or talking about the garden or the weather brings no real response.  She used to be able to make some kind of comment even if she had no idea about the topic.  Now there is nothing.  No comments.  No indication that what I have said has even registered with her.  More and more she speaks randomly as her brain fires here and there.  Her poor fog shrouded mind is lost not just to us but to her.  She looks out from frightened eyes and says, "I'm dying."  She is, and it is a slow, horrible death.

Laundry

For two and a half years I've been doing Mother's laundry.  As my husband keeps reminding me, Mother pays for that to be done.  But in washing her laundry, I've felt like I was helping to take care of her.  Her clothes have also lasted longer and been nicer since I don't use such harsh detergents to wash  and super high heat to dry her clothes.  I've been doing 3 to 5 loads of her wash a week.  Most of the time these were small loads, but because of her incontinence, there are often several outfits a day.

While I was gone the home did her laundry, and I've decided to continue to let them do this.  Here is the strange part.  I feel such freedom in letting someone else do this chore.  I thought it might make me feel guilty because Mother often thanked me for doing her laundry, but this is not the case.  No guilt.  I feel like I can time my visits around my schedule rather than around the laundry.  What freedom to no longer be a washing drudge.

It seems silly, but this small change has made a difference in my approach to Mother.  This small change has made me acknowledge the bigger changes in Mother.  I am no longer trying to hold off the inevitable decline into complete loss.  Doing the laundry was a symbolic act on my part, as if I could keep Mother from slipping away behind piles of laundry and detergent. I can now say that instead of trying to keep some normalcy for Mother, I can accept her limited life.  The decline is so much more pronounced.  We are now at the stage where we just try to make her moments bright.  And I can do this without a bag of laundry in my hand.

Little Things

I've been away for a week.  When I have to be out of town, I usually worry about Mother.  This time, other family members checked on her, and as terrible as it sounds, she has declined so much that I knew she would have no idea I had been gone.  She didn't.  She looked at me when I came into the room, and it was just like every other day that I walk in.  It is true that with Alzheimer's every day is just like every other. But even so, Mother finds joy in the little things that appear every day.

More and more Mother sleeps or lies in bed and looks out the window.  I have hung a basket of petunias outside her window so that she can look at them, and today she was delighted to see some bees at the flowers.  The little things of life are what bring her so much pleasure.  A cup of fresh blueberries, strawberry ice cream, a coke for "happy hour," or a bee outside her window.  Her world is very small, and perhaps I too should take more pleasure in the small delights of life.  Even in her dementia Mother is teaching lessons on life if I pay attention and see what is just outside the window.

That Which We Have Greatly Feared

Mother had a friend who when something bad happened would say, "That which we have greatly feared has come upon us."  That is now the case with Mother.  Some people with Alzheimer's tend to sexualize everything.  That is the case for Mother.  She would just die of shame if she knew some of the things she does.  She flirts with any man, which is not too bad, but sometimes her behavior goes way beyond anything that is socially acceptable.  That happened over the weekend.  There were repairmen in the Alzheimer's unit, and Mother kept taking her clothes off in front of them.  The staff had a terrible time getting her dressed and redirected.  She did it three times.

I hate getting reports like that.  What can I do?  Nothing.  What can the doctor do about it?  Nothing really.  When she gets like that, Mother has absolutely no control of herself.  She has no idea that what she is doing is wrong and makes everyone uncomfortable.  At that point her primitive brain is all that is working.  And it is primitive.

Today was not much better.  She was staying dressed, but she couldn't distinguish between yes and no.  It took me a moment to figure out what she wanted.  In the mean time, she yelled and hit and became distressed.  Then she wanted a hug and a kiss.  Her emotions were all over the board today, and she had a wild look to her eyes.  I could only stay with her for about 20 minutes today.  It was too hard.  The Mother I knew was not present. 

On days like this, my soul feels like it is under a rubble of rock.  I think of what Mother's friend used to say, and I know that for Mother one of her greatest fears has come upon her. And there is nothing to be done.

Tell Me What I Feel

Mother is beginning to lose the facility to name her emotions or to recognize what she is feeling.  It is confusing for her, and I find it terrifying.  It means that one more piece of her is failing. 

She had enjoyed a program with music and some dancers at the home, and I arrived just as it was concluding.  As we went to her room, she was so excited, and told me she had had such a good time.  Then she asked, "Did I make a fool of myself?"  She is still aware that she gets up and dances and sings with any music that is played.  I told her she had been perfect.  Suddenly, she was crying and saying that the people had been mean to her and she had had a terrible time.  Where did that come from?  She had been so happy and had enjoyed herself.  I had to re-focus her to what a good time it had been.  I named what she did and how she felt.  She finally smiled again.  Such confused feelings. 

I can't imagine what she must feel like.  She really didn't know what she had experienced or how she felt within just a few minutes.  I had to name her emotion for her and tell her what she felt.  It is pitiful for her to be so infant like.  A baby knows she feels something, but she can't name it.  Mother is becoming like that, but her emotions are so mercurial that I try to name only positive things for her and keep her focused on happiness.  It is difficult.  I try to leave her happy, but often I feel like I have been emotionally beaten down.  I drive away crying and have to remind myself to remember the happy times and focus on the happiness.

Do Not Go Gentle

"Do not go gentle into that good night.
Rage, rage against the dying of the light."  Dylan Thomas

It has been difficult to think about writing in the last few days.  The lines from Dylan Thomas keep coming to my mind.  His poem deals with approaching death, and he suggests that death should be fought.  For me, as I think about Mother, I cannot fight against physical death, but I find myself raging against the dying light of lucidity. 

I rage against the dying of the light of losing recognition.  I rage against the dying light of not distinguishing one day from another.  I rage against the dying light of losing control one's bodily functions.  I rage against the dying light of not being able to wash one's face.  I rage against the dying light of knowing where you are.

I feel like holding Mother tight and not letting go.  She is going gentle "into that good night" and I rage against it.  I want to kick and scream and shout "you can't have her!"  But the disease progresses and all the rage and love and care in the world can't stop it.   I am watching her slowly sink away from us into a dark, deep hole.  But for all my raging she goes. And it is not gentle.  It is painful.  I weep. The dying light continues to deepen.

Guilt.  It is a new experience for me.  I've never been one to carry a lot of guilt.  I've felt very bad about some of the things I have done in the past, but usually I learn to forgive myself, make amends and move on.  I have not understood the complex emotions associated with guilt, but I am learning about them now.

I feel guilt about Mother being in a nursing home.  I feel guilty when I walk into her room and find chocolate ice cream on her chin; I feel guilt when Mother feels lonely.  In fact, there is very little about Mother's life right now that I don't feel guilty about.  My head tells me that I did not give her this disease.  I know that she has to be in a facility where she can have 24/7 care and someone awake and watching out for her.  I know that she needs locked doors and an ankle bracelet to keep her safe.  I know that her awareness levels are not what they used to be, but that does not lessen my feeling of guilt.

I feel guilty that I can't keep her at home.  I feel guilty when she tells me how lonely she gets.  I feel guilty when she doesn't like the food.  I feel guilty that she has multiple urinary accidents each day and has to be changed often.

My conflict seems to stem from the fact that I cannot control the quality of her life.  I can't change where and how she lives.  I can't make it better, and I want to make it all better.  I want her to have the life she had.  I want her to smell like home and not THE HOME.  I want her to be able to sit outside without being afraid.  I know that the sense of guilt is not rational, but I can't make it go away either.  I am her daughter.  I'm responsible for honoring her and taking care of her, and I want it all to be better.

Here but Gone

Mother greets me with the words, "Mama, mama, mama."  She reaches out her hand and asks for a kiss.  I hug her and kiss her cheek.  She eventually remembers who I am.  I am becoming used to her calling me mama when she is stressed.  At those times she is such a little girl, and at times in her mind I have become her mother. I brush her teeth, I  bring her cups of tea, I tuck her in.

This is one of the most difficult things for me.  The role reversal.  It feels so strange to have the woman who was my caretaker and comforter now need so much from me.  In that sense, I think my Mother is gone.  The woman lying in the bed looks like my mother, but she is no longer "Mother."  She can't ask how I am.  She can't ask how the children are.  She can't ask what books I am reading.  She can't interact and relate.  I have to keep the memories of her fresh because although her body is still here, her mind and her personality are gone.  My sister who lives several hours away said she wanted to come see Mother because she misses her.  I told her that even when she comes, she will still miss Mother because she is no longer here.

Music and Dementia

http://abcnews.go.com/Health/AlzheimersCommunity/alzheimers-disease-music-brings-patients-back-life/story?id=16117602#.T4bWHJkvkUU

This ABC News story chronicles how music affects Alzheimers patients.  I see this every day in Mother and the other residents.  Even the most withdrawn residents perk up when there is a music group singing or when the karaoke is going.  Mother actually smiles, dances, claps her hands, and the music truly lifts her spirits.  We keep a radio by Mother's bed, and we often sing together, which makes her happy.

There is one man in the Alzheimers unit with Mother who listens to his music every day after lunch.  He can barely speak, he sleeps almost all of the time, he is confined to a reclining wheel chair, yet when his music is playing he sings!  He moves his hands.  He experiences a real joy.  I love walking by his room and hearing his mumbled words and watching him swing his hands.  He's having a great time.  Music does bring the dementia patient alive!

Like a Child

Mother's behavior becomes more and more child like.  This past week she had one of her most lucid days in over a year, but the next day she threw a tantrum about taking her medicine.  I didn't get to witness the tantrum, but the evidence was all over her face.  Most of her medicine is crushed and put into a paste, but there were streaks of orange something across her forehead.   She had rubbed the same orange concoction in her hair.  I hadn't seen anything like that since the children rubbed their baby food in their hair as they were beginning to feed themselves.  In the laundry I found a shirt with pieces of have chewed pills dotting the sleeves. The aides said it had been quite a struggle to get her to take her medicine.  She had spit and fought against taking her pills.   It is difficult to understand how her mind can be so lucid talking about her favorite restaurant one day and then the next be so absolutely infantile. She eats with her fingers more and more.  Even ice cream is dipped with her finger and then sucked off.  She stuffs her mouth and cheeks with food as she eats and has to be reminded to chew and not overfill her mouth.  More and more Mother is becoming like a small child.  But in an adult this behavior is so difficult to deal with.  There is no way to teach her better.  There will be no improvement.  There will only be more decline. It is difficult to see such child like behaviors in this once elegant woman now chewing the corner of her blanket with food and medicine streaking her hair. I leave the nursing home on such days drained and bewildered.  I don't know what to do.  I think that love should cure this, but it doesn't.  Love just wipes the mess out of the hair, puts the spoon into her hand, changes the wet clothes and rocks her when she cries.

Changes

Mother is going through a series of new changes in her mind.  Her thinking is becoming more and more confused.  The terrible part of this is that she has some awareness of it. She can tell us on any given day whether it is a good mind day or not.  Bad days are obvious.  She sleeps curled up.  Her face is a blank.  She has no idea where she is; she can't always find her room.  She sucks and chews on her thumb.

Occasionally, there is a moment when she not only remembers, but she is aware that she remembers.  This week there was a singing group performing at the home.  Mother  loves music, so I took her into the main area to listen.  They sang many old gospel songs, and Mother sang along, but she did this by watching the lips of the singers.  Like a small child, if she watches closely enough she can figure out the words.  As the group was leaving, someone began singing My Country Tis of Thee.  Mother stood up and sang every word!  She looked at me and said, "I remembered all of that one!  I sang that when I was in school."  She was so proud of herself not just for remembering but for knowing that she remembered.

A few seconds later as we returned to her room she said, "Now where are we?"  That moment of recognition was so very brief, and those moments come less and less often.  I treasure these brief moments of knowing.  I hang on to every one of them because between them are vast empty spaces of nothing.  Her mind is filled with so many vacancies which she described recently as a numbness.  Knowing is connecting, and I fear the time when there will be no knowing.

Naps

Mother sleeps more and more it seems.  Part of this is the schedule at her nursing home.  After lunch, most of the residents take a nap.  Mother used to skip this ritual altogether, but lately, I find her curled up on her bed sound asleep under one of her fuzzy throw blankets. 

She loves her bed.  If we've gone for a walk around the building or outside, she is always excited to see her bed, and she asks if she can lie down on it.  If she can't find her bed, any bed will do.  More than once I've found her in other rooms and in other peoples beds. Sometimes someone else is in her bed. The home can be a bit like Goldilocks and the Three Bears;  you find a bed that is "just right" and take a nap.

Today, I put laundry away and worked around her room thinking she might wake up.  I found lemonade in vase with the artificial flowers - she had "watered" them - and her wall hanging was on the floor.  She had pulled it off the nails and had chewed the corner of the hanging.  There was also a straw hat on her bed.  If she were a teenager, I would wonder what kind of party and been going on.  But, alas, it is only her poor scattered brain working in ways we can't understand. 

After I had puttered around her room for a while, she did awaken.  I asked if she had had a nice nap.  "I did until you woke me up!" she mumbled and turned over.  That was my cue to leave.  Sometimes nap time is sacred and should not be disturbed and no questions should be asked.

Chinese Food and Basketball

There are some few pleasures that Mother still has.  One pleasure is eating, and one of her favorites is sweet and sour chicken.  Today I took sweet and sour chicken to her for lunch.  I had two orders so we could eat together.  She nearly wiggled out of her skin with pleasure.  She bounced on her bed and started her mmmm, mmmm, mmmm, hurry, hurry, hurry, arms flapping and picking at the knot on the plastic bag the food was in.  Once I had the food on a plate and the chicken cut into pieces she could handle, she started in with both hands.  Literally.  I had to remind her use a fork.  Then I have to watch very carefully because she stuffs her mouth so full she chokes if you don't help her limit her mouthfuls.  But she loved it, and the bouncing and mmmms just kept coming.

To add to the pleasure of the day, she was watching the NCAA games.  She seemed very intent on the game, but she rooted for both teams.  I tried to follow her and would cheer for who I thought she was rooting for, but invariably she had changed sides and would give me a dirty look.

It took her an hour to eat and then stuffed with rice and chicken and the TV still on, she drifted right to sleep.  It isn't much, but it was a good day.  She was happy, and it makes me happy to be able to see her enjoy some part of life.  Maybe the rest of us can still learn something from Mother.  No matter what, a good meal and a good basketball game can make the world right if just for a moment.

Hollow Woman

Today it feels like Mother is gone.  The Alzheimer's, the dementia, has taken her completely today.  She greeted me by name, but today there was so little of her remaining.

She was just finishing her lunch, and I could tell by looking at her that it wasn't a good day.  Her face was dark.  There was so little life to it. She had eaten all of her lunch, but there was just a blankness about her that told me even the pleasantries she can usually manage would not be there.  She noticed the monkeys on the bag I was carrying, and she shook her fist and said, "Big ears, they have big ears.  Just like Bob."  Her face was pinched into a scowl and she would shake her fist at the monkeys.  I put the bag out of her sight and suggested that today we would try to be all sweetness and light.  Her demeanor changed completely.  She smiled, as real a smile as she can manage, her face relaxed, and she was calm again. But the darkness returned.

She was still gone.  We went to her room, and she just stood in the middle of the floor.  She did not want to sit in her chair.  She did not want to lie down.  She did not want to look out of the window.  She just stood there blank and quiet.  I suggested she help me put the dirty clothes in the laundry bag, but she declined.  She just stood.  I finally got her to help me hold the bag open, but she was disinterested and wandered over to her bed.

We flossed and brushed her teeth, changed her wet diaper, and I tucked her into bed for a nap.  She looked at me and said, "You are fading.  So long dear friend."  I kissed her, stroked her hair and told her I would see her later.  Today there was no response. 

This is the first day I have not been able to find Mother, or at least a little part of her.  She was gone.  I'm left feeling so hollow inside. I'm terrified that she is gone for good.  I know that the disease is slow, and she will have more good days when I can find a small piece of her.  Today I could only find the husk of her body animated and moving but not Mother.

Good Neighbor

At times Alzheimer's can make Mother very cruel.  She has been know to hit the staff and spit at them.  She has thrown water on all of us.  She has squeezed our hands until she has nearly broken them.  Her language can be ugly an cruel.  We all know this is just the disease.  It seems to take the mind to its lowest depths.  One becomes the primal animal rather than the human that rises above cruel and debasing behavior.  Yet even with Alzheimer's, Mother often shows compassion and love.

Recently, one of the ladies in the Alzheimer's unit, lets call her Maude, fell and had to go to the hospital.  Maude's room mate, lets call her Gina, is very afraid to be alone.  Maude leads Gina everywhere and helps her as she can.  Gina was completely lost.  But Mother knew Gina was upset and spent the days with her.  The staff said Mother would sit by Gina and hold her hand to keep her from being afraid.  During that time, I always found Mother with Gina.  She took her naps on Maud's bed to keep Gina company.  When Gina would cry, Mother comforted her saying, "Don't cry, Gina.  I'm here."  When I walked Mother to the dining room, Gina came with us.  I had Mother on one arm and Gina on the other, and they were both so happy.

Those are the moments I cherish.  The times when the love and goodness of Mother shine through the ravaging disease.  Then I know that she is still here with us, and we haven't lost all of her.

Baby Love

One thing I have discovered is that caring for an Alzheimer's patient is much like caring for a young child.  People with dementia do become child-like, and their responses to everyday tasks can become very much like dealing with a strong-willed 3 or 4 year old.  Yesterday Mother was wearing a lovely watch.  It was not hers, and none of  the staff knew where she got it.  But Mother sincerely told me that she got it from her grandfather at the train station.  She didn' blink an eye because to her it was the truth.  I have carried virtually every piece of clothing and personal effects into her residence, and that watch is not hers.  No one can get it off her arm without a fight.  She loves it.  So now she is a thief.  Well, maybe not because she doesn't know that it isn't hers.  Alzheimer's blurs the sense of right and wrong.  All she knows is that she found it, she liked it, she's wearing it, and she believes it was a gift.  I can't make her return it like I would insist a child do.  She has no idea where she got it.  We will have to wait until shower day to get it off of her and turn it in to the lost and found.

She is often incontinent, and even with her "pull ups," she often soaks through.  Virtually every morning her bed it wet.  Many times I find her clothes wet when I visit.  Nothing makes a person move faster than sitting down on the bed next to her and feeling the seeping wetness on your own clothes. It disgusts me that the staff doesn't always notice, so I know she has been in wet clothes for some time.   That is one reason that I do her laundry.  Wet things can sit awhile and the smell is overpowering,  and she can go through two or three outfits on some days. That means four or five loads of laundry a week and using borax to neutralize the odor.  It can feel like caring for a child who is being potty trained.
Yet despite the disgust of wet clothes and the ethical problems of  her taking what she sees, I love her.  It is like baby love.  The small child doesn't know what they are doing.  She doesn't either.  A small child can be taught.  She cannot learn, and in fact the problems will increase.  So love is unconditional.  Love learns to laugh.   Love cleans up.  Love shouldn't complain, but sometimes I do.  But I always come back to the love.  I can sit and watch her sleep, and like looking at a sleeping child, I love her peaceful face full of the innocence of dementia, and I love her.

Thy Rod and Thy Staff, They Comfort Me

Mother is afraid of dying.  She never has been before.  She has always talked of death logically and with faith and not as something to be feared.  Her father also had Alzheimer's, and she used to talk about the fact that he lived so many years with the disease because he was afraid to die.  She didn't understand that because her faith has always been strong.  But now she is afraid.

Perhaps it is because she feels herself dying in little pieces.  She describes it as a sinking feeling or like being in a boat in a deep fog.  Now she is beginning to cry and cringe when she talks about death. "I'm dying, I'm dying!"  she cried, and then she asked, "Am I going to die?"  It was pitiful.  She lay on her bed with her hands tucked under her chin and pulled the afghan up around her.  There was real terror in her eyes.

I told her we would all die one day, but that I thought she had many years left.  Her response, "Oh thank you."  She relaxed.  She smiled.  I wonder how often that fear and realization grips her.  Does she lie there worrying and afraid?  I can't think about it too much because to think about her lying there in a state of fear is gut wrenching.  I imagine her alone on her bed feeling her life ebbing away and needing someone to hold her hand and and stroke her hair and reassure her.  How can I comfort her when she can't hold a word of comfort in her mind for more than a few seconds? 

I try to get her mind to return to her faith.  She can still say the Lord's prayer.  We pray.  I read the 23rd Psalm to her.  We sing some hymns.  She remembers words here and there and watches my lips to try to catch the words singing just a beat behind me.  She is comforted.  She speaks about her faith.  She remembers that Jesus loves her and will not leave her alone.  She remembers, but just for the moment.  And the next day she asks, "Am I dying?"

Losing More of Mother

Alzheimer's is slowly, slowly stealing Mother.  The medications make the decline more steady, but even so, there are times when the changes in her are more pronounced.  I see her almost every day, but this last week I have noticed that she has lost more ground.

She has stopped greeting me by name as much, and often I see her really look at my face before I am sure she recognizes me.  She often thinks I am "stealing" her clothes when I gather her laundry.  She is sleeping more, and her left hand is curled into a tight fist.  These are all small things, but they indicated decline.  We lose more of her, and I miss her.

Someone said that they don't visit because they want to remember her as she was.  To me, those are the ugliest words imaginable.  It negates the fact that she is still herself.  Changed and diminished from what she was, but she is not dead.  She is still with us.   Alzheimer's is a part of her life and who she is.  To only remember her as she was and to refuse to acknowledge who she is now is incomprehensible to me.  Don't we all wish she was who she was even 5 years ago?  Of course we cherish those memories, but to stop seeing her, to stop interacting with her, to set her on a shelf and forget who she is now simply kills her.  It is not love.  It is selfish.  No, she won't remember you visited after you leave, but she knows someone is there when you visit.  She only has the moment.  To not share some of those moments is to diminish the only part of life she still has.  Alzheimer's does not just affect the person who struggles with the disease.  It affects family and friends too, but it really isn't about us or how we feel or what we want to remember.  Love is about the person who suffers, and even in the midst of decline love is all we have to share.

"You Are Bad, Bad, Bad!"

"You are bad, bad, bad!"  That's what mother was saying with her lips pursed while shaking her finger at me.  She was very upset with me, and even yet she can give a good scolding!  Sometimes with Alzheimer's disease it is difficult to distinguish the petulant child from the mother who is unhappy with her child's behavior.  This time it was both.

Mother had a sweatshirt lying on her bed that was not hers.  Checking the tag, I noticed that it belonged to her suite mate.  When I picked up the sweatshirt, Mother started in with "what are you doing - that's my shirt."  Nothing I said would dissuade her.  As I left the room with the sweatshirt to return it, I could hear her scolding me and protesting. She was childlike in her believing something was "hers", but she was also an angry mother whose child was not doing what she wanted her to do. 

It is a fine line to walk sometimes, that line between still being her child, and yet playing the "parent" role of making her floss her teeth, limiting her chocolate, and making her return things that are not hers.  I thought maybe it would be easier to do.  But there is something in that wagging finger and the accusation of "being bad" that still resonates in the back of my mind.  I felt guilty for upsetting her because her belief in her ownership of that shirt was real.  That is the problem with Alzheimer's; one's reality changes.  Sweatshirts or relationships, it all becomes as tangled and scrambled as her mind, and we are all a part of it.

I Like It Here

For much of her life, Mother lived in the fishbowl of small communities as a minister's wife.  When that life ended, she eschewed much of her previous social life and chose to live quietly in the woods keeping up only with family and a few close friends.  She liked the idea of being a "hermit," and in the early stages of Alzheimer's this drawing away from others became more pronounced until she had no real social contact outside of family. So for this very private woman, learning to live in an institution was a major life change.

What is amazing to me is that Mother has adjusted to nursing home life, but she can still play the role of the minister's wife.  It is so ingrained in her that even in the depths of the disease she can move from group to group greeting people.  Sunday as we walked the halls, she waved to staff and residents who called her name; her best smile - a real smile- on her face.  She walked up to individuals and shook their hands and asked how they were.  She introduced me to everyone - again- but with the best of manners.  Gone were the grimacing looks, the hateful comments, the coarse asides.  She was happy with the adulation of her friends and the staff.  "I like it here.  They like me," she grinned.   I was escorting a queen down the hall in her red gripper socks, swinging her hips and happy in her realm.

Lonely

This is the first year that Christmas has had no real meaning for Mother.  The trees were pretty, the inflatable Santa on the yard was exciting, the packages were fun for a minute, but there was no real sense of holiday.  Everything was in the moment except her sense on loneliness.

Several times during the holidays, curled up on her bed with her head tucked down, she told me she was so lonely.  It is true that one can be surrounded by people and yet be incredibly lonely.  She craves conversation, but that is almost impossible.  I talk with her, and like a very young child, she takes it as conversation.  But there is no real meaning and there is so little I can do to alleviate her loneliness.  We walk to the indoor aviary or stroll down a hall.  We play catch with a small, soft ball.  We watch TV together.

It isn't enough, but it must do.  She has long hours, yet time doesn't move for her.  A few family members visit now and then. I visit almost every day, yet the loneliness continues for her.  She can't remember that we were there, so to her the loneliness is primary.  She is trapped in it.  And I wonder how often this scene is repeated in the home, in the city, in the state, in the nation, and in the world.  Old people, once so beloved and so involved in the lives of family and friends sit alone and are lonely.  They are not who they were, and visiting them can be very difficult.  But still the essence of who they were remains.  Their presence is still real.  They are still human beings who need to be loved and touched and kissed.  I sometimes despair that Alzheimer's takes the memory of visits and love from Mother and leaves her lonely.  Perhaps I too will have to learn to live in just those moments with her and make them enough.