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.