Ebb Tide

Mother is in a downward spiral.  Sometimes, when she has a few good days in a row, I think maybe I am mistaken.  Maybe it isn't that bad.  It is.  The doctor confirms it.  Her behaviors verify it.  She is in the last stage of Alzheimer's disease.  It is ugly and will get uglier.

Today she sat in her wheelchair barely able to lift her head.  A weak smile tugged at the right corner of her mouth, but that was all she could manage.  I fed her two M&Ms, but she couldn't chew very well, and the chocolate drooled out of her mouth.  Even the most basic pleasure of eating candy is almost beyond her.

What is left?  Why does life go one when there is only sitting and drooling?  Because when I hug her and tell her I love her, she moans back at me.  I look into her eyes and say, "You love me too, don't you."  She moans her response.  I hold her close and stroke her hair and there is love between us.  Not a slow death, not chocolate drool,  not a contracted and half paralyzed body can take away the love.  That still is, and for now, that is enough.

How I Do Love Thee

I love you when all you can do is smile.

When you forget how to raise a glass to your lips and bend over the glass and slurp and sip, I love you.

When you press your nose to mine and blink and stare like a child playing a game, I love you.

I love you when you chew holes in your clothes or chew the buttons off your pajamas.

I love you though you howl and bellow.  I love you though you don't always know who I am.

When you cry because you think your food or your jacket is dead, I love you.

When you fight having your teeth flossed, and you breath can knock me over, I love you.

I love you when you ask the same question ten times in as many minutes.

I love you when your face is dirty and your hair is a mess.

I love you when you throw your water on me or pinch my arm.

I love you when you tell me I am a bad girl.

That is not always you.  I love You.

I love the you who gave me time when I was a child.  Who brushed my hair and ironed my dresses.

You who teased and prodded and made me do my best.

I love  you who held me when I cried and kept me safe from so many of the traumas of life.

I love the you who played with me.  The one who taught me to cook and to grow a garden.

I love the you who taught me kindness and fairness and faith.

I love the you who wore underwear with holes and old dresses so that I could have shiny new shoes.

You who celebrated every accomplishment in my life.  You who were always there with advise.

You never left or failed me, and I will stay with you because that is how I love you.

Struggle of Love

I am struggling with deeply mixed feelings this week, and part of my struggle is with guilt.  Always guilt.  The guilt is misplaced, and intellectually, I know that, but emotionally, I still feel guilt.  It is as if I am responsible not just for Mother's care but for her having dementia.  I feel responsible for how she feels knowing that that kind of thinking is senseless.  Nevertheless, I feel it.  My mind wrestles with my heart.

Over the last months several friends have lost their mothers, and even though the pain and sorrow they feel is deep and real, I imagine there is a sense of relief.  I know that my prayers have been that their mothers have been welcomed home into the kingdom of heaven, but I have also whispered a prayer of thanks that their mother's struggles are over.  And therein lies my guilt.

I welcome Mother's smile each time a visit.  Yesterday, when I first arrived, I took her face in my hands and kissed her cheek as I always do.  She grinned and called me by name and said, "Oh, I love you."  It was so sweet.  She knew me yesterday.  I was overcome with joy that she could recognize me and express her love.  I was happy to have that moment with her.

But as we went for a walk in the hall, it was evident that she was having trouble walking.  He left leg and foot were not working well.  He arm was curled and her hand clenched.  Her diaper was full and sagging.  I changed her diaper, but there is nothing I can do about her arm or hand or leg.

Her talk turned to silly jabber.  She howled.  She accused everyone else of having lost their minds and not knowing a thing.  She got upset when another resident had a cookie and wanted one too.  I got a cookie for her, and she tried to stuff the whole thing in her mouth at once and got choked.  I have to remind her to sip through the straw of her drink and not just chew on it.  She wanted to hold hands, but she squeezed my hand so tightly that I thought she might break a bone.  Still she tried to grab my hand and would  press her lips together and grip as hard as she could.  She is still very strong and she can inflict pain.

And this is where the guilt comes.  I cherish my Mother.  Despite the horrors of the dementia, I enjoy most of my visits with her.  There is still her presence that I don't want to give up.  Yet, there are days when I wish the struggle might be over.  I don't want to lose her, but sometimes the struggle, the loss of who she is and was is overpowering.  Sometimes her life seems full of joy, and sometimes nothing but misery.  The emotions clash and roll through me.  And on the days when I wish the battle was done, I feel guilt beyond measure.  Even confessing to these emotions generates guilt, but they are real emotions and denying them doesn't make them disappear. So, perhaps acknowledging them and knowing that at the core of it all is love will help ease my struggle. But both Mother and I will continue to struggle in our own ways.

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.

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.

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.