Like a Child

Mother lay in her bed half asleep, her chin tucked against her chest.  The heating unit hummed away blasting tropical temperatures into the room despite the ice and snow outside the window.  Mother stirred as we entered and reached out her hand to me.  So like a little child wanting to be picked up and cared for.

I sat on the bed beside her, and my husband sat in the chair beside the bed.  Today was a quite day.  Only one or two words formed slowly on Mother's lips, and even her smile was slow in coming.  But the iron grip of her good hand was as strong as ever.  She grabbed my hand and tucked it under her chin.  If I moved at all, she grabbed again and held my hand tight against her as if she needed the security of our presence.

So, we sang to her.  We sang Joy to the World, Jingle Bells, White Christmas, Hark the Harold Angels Sing in uneven harmony, and then she began to sing in a growling whisper, "We three kings...."  That was all she could manage, so we took up the song for her.  Her lips would form a word now and then, and she would look at us with the fascination of a child keeping her eyes on our lips and trying to figure out what would come next.  Then she closed her eyes, still gripping my hand, and there it was.  The faint half crooked smile like a baby just falling asleep.  She was happy and content.  Music, touch and a room the temperature of the tropics.  Merry Christmas, Mother.

Into the Dark Future

I have found it  difficult to write about Mother this fall.  Her decline is more profound and pronounced, and there are days when she sleeps so soundly that she never knows I have been to visit her.  I sit by her and hold her hand, but she doesn't stir.

I spoke with her physician, and there is nothing to do but keep her happy and clean and comfortable.  The disease has stolen so much of her, yet when she is awake, her smile is still there.  But the disease has stolen her speech; she has lost her words. Occasionally she speaks a word or two.  I ramble on in a monologue telling of the events of our daily lives.  She smiles and occasionally raises her eyebrows in response, but I am not sure she understands anything I say.  The sound of my voice, the idea of conversation is something she can connect with at some level.

Perhaps this is the most heart wrenching.  I can't tell how much of her is still with us.  I can't tell how much she understands and how much is just a reaction.  She is more and more like a very small child.  A piece of chocolate, a soft drink, a silly song- these give her joy. But more and more she is beginning to stare into space.  No reaction.  No facial expression. No Mother.

I want to hold her close and keep her from going.  At the same time,I want to be able to let her go.  We are caught in a limbo world that could go on for years.  We are moving through the foggy places of the dark future where we can't see what is to come, and there is no defense for what is to come. We can only hold hands and travel together.

Tangled

Tangled.  That is Mother's mind.  Like a thin, gold chain, some days the knots and twists in her mind are impossible to get beyond. Just when you think you have identified all the twists, another wraps itself around the chain and pulls tightly. Tangled.  And the chain will not give in to even the gentlest probing; the knots only tighten and become unyielding.

Now the tangles are taking Mother's speech.  On good days, she can say a word or short phrase understandably and loudly enough to be heard.  On bad days, she only blinks her eyes, or nods her head or points with her chin;  there are no words.  But the worst days are when she whispers.  She hisses and slurs words so softly I can't make them out.  She becomes frustrated because I can't understand. I become helpless before the tangle of sounds unable to respond to her requests, only guessing what she might be trying to say.

The tangles in her mind and the small stroke from a year ago are  taking her body.  The clenched and contracted hand no longer responds to therapy.  Her shoulder and arm are beginning to contract. On some days her legs work, and she can shuffle along, but now she occasionally must use a wheelchair.  The tangles might be in her brain, but they have long tentacles that reach to all of her body slowly wrapping it up in their tight bundles.  And I have no tool to untangle the knots in her mind and body.  I can only sit and hold her hand and watch.

 

The Thing Is . . .

Guilt.  It has plagued me since we first moved Mother to assisted living and then to the nursing home.  I am not a guilt prone person.  It has always been something I avoided or rationalized away.  But for the last five years, I have felt guilty almost every day.  I've felt guilty when we had to take Mother away from her beloved home.  I've felt guilty when I could only stay a few minutes to visit her.  I've felt guilty if I couldn't go see her.  I've felt guilty when there was a family celebration and she couldn't be there because she was in the nursing home.

None of this guilt makes rational sense.  I can't control the Alzheimer's disease. I can't spend all of my time at the home with Mother.  I can't ignore the rest of the family.  I have to take care of my own health. Yet, the guilt persisted.

But I am beginning to learn to let the guilt go.  After being either in the hospital or confined to my own bed for two weeks, I had time to think.  Guilt does me no good.  Guilt does Mother no good.  

 I am trying to let go of the guilt of not seeing her every day and to replace that guilt with gratitude for the times I can visit her.  I am trying to learn to let the visits be a part of my life instead of letting the visits drive my life.  The thing is . . . this is difficult.  

So today I had the time to visit Mother.  Yet, I still feel the need to let my body recoup from my recent illness.  I had to balance the choice.  I had to consider.  The guilt started.  I looked at the situation rationally.  I stayed home.  But then again, there is time later today . . . 

Dignity Lasts

Mother's behavior is deteriorating once again.  As a person progresses through dementia, there is a time when she may be accusatory or destructive, hallucinatory or aggressive.  For Mother, who at one time or another has been all of the previous, these stages have passed. She has been more docile and happy.  Instead of throwing things at windows and doors trying to get out, she finds comfort in her room.  She sometimes gets confused just in the one hallway behind locked doors, which is her Alzheimer's unit.  We thought the wild behaviors were behind us.  We thought she had reached a quiet state where she smiled and was happy.  That is not to be.

Once again, as the tangles in her brain increase, odd behaviors emerge.  Some are harmless.  She wants to touch her nose to our noses or to the table in front of her.  Some are more worrisome or dangerous.  She fights being led to the bathroom.  She tries to sit down as she walks, and she wants to scoot on the floor.  It is as if she slips more and more into infantile behavior.

Yet through all of this, we and the staff at the home try to maintain her dignity.  But it is difficult.  How can having a teething ring because she chews everything in sight - clothes, papers, towels, flowers, tissues- be dignified?  How is scooting on the floor and screaming dignified? How is trying to lap up a drink because you forgot how to pick up a glass dignified?  How is eating with your fingers because you don't remember how to use a fork or spoon dignified?  No amount of physical or occupational therapy, no amount of talking, no amount distraction can make those things dignified.

Still, there is dignity.  There is the deep love and respect for the woman Mother was.  There is respect for her being the kind of parent who made us behave in public, who disciplined with love, who taught us tolerance for those different from ourselves, who gave us self-confidence, who taught us faith, who taught us to laugh at ourselves and who loved us no matter what we did - good or bad.

It is love and respect for who she was that allows me to gently say no when she bites, to feed her when she tries to use her fingers to eat soup, to encourage her to stand up straight and tall when she wants to sit and scoot.  Perhaps dignity is something that remains even when our mind has gone because we built it long ago.

Fragrance Past

They say smell is a strong trigger for memories.  I believe it is true.  The smell of a gas cook stove and bacon sends me right back fifty years into my grandmother's farmhouse kitchen.

Mother's mother died young, and Mother put some of Grandma's clothes in a plastic bag to keep.  One day I found the bag and asked Mother why she was keeping the clothes.  She confessed that from time to time she would open the bag to smell the clothes.  Then she let me smell them.  The clothes smelled like my grandmother, and Mother was keeping that smell, that part of Grandma locked up for as long as she could.  It was a comfort to her.

Now when I visit Mother, I find myself smelling her hair and inhaling her scent when I hug her. It is the one part of her that hasn't been lost or become changed beyond recognition.  Her smell, despite the nursing home and the institutional soap, is still the same.  It is still her.  I can close my eyes and remember the Mother who comforted me as a child when I was sick or afraid.  I can still smell the Mother who walked in the woods.  She still smells like the Mother who made my clothes and ironed my dresses for school.  I can still smell the Mother who kept me from wiggling in church by resting her hand on my knee.

The smell is the same, and sometimes, for just that briefest of moments, I can have my mother back. It is a comfort to me.

Bits and Pieces

Mother turned eighty-five recently.  She has always been physically strong, but as her mind fails, so is her body  failing.  She rarely seems to notice the changes.  Sometimes when she walks, she will say, "I'm dragging my foot."  She notices that the small stroke took her sure stride, but she just smiles.  Her teeth are beginning to break, and she is getting cavities, but she just smiles and howls louder when we brush and floss.  She ability to speak is diminishing.  The stroke didn't affect her formation of words, but she just can't find the words.  She stares or speaks in a whisper or simple mouths the words.  Sometimes she just blinks, and I must figure out if that means yes or no. Her left hand curled tightly to her body doesn't seem to exist for her.  She rarely moves the arm at all any more.

In bits and pieces she is leaving us.  I wonder when what is gone will be so great that we will not recognize what is left.  Where is that tipping point?  Or will there always be enough bits and pieces to  recognize?