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?"