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.