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.

Just an Angry Rant

I'm frustrated and my anger is on a slow simmer, but it threatens to boil over.

Mother's left hand is drawn into a tight fist.  Her wrist swells.  When the hand is opened, it is moist with the yeasty smell of decay.  After two attempts to get therapy for Mother, the doctors orders were finally followed, and Mother began therapy for her hand.  The results were so promising.  She could open her hand and wiggle her fingers.  She was even beginning to use the hand again on occasion.  The swelling was gone.

Today her hand was balled up so tightly that I could not get her to open it.  Her wrist was swollen and purple and the smell was sickeningly sweet.  When asked her to try to open her hand, she opened the other hand.  It was as if there was a mental disconnect between the fist and her brain.  I massaged it, and slowly, slowly she got it open.  I cleaned it and she moved her fingers.  All of the progress has been lost.  Her hand is the worst it has ever been.  It is essentially useless.

This shouldn't happen.  Once again I found myself in the nurse's office.  Once again the head of therapy apologized for dropping the therapy. Once again she apologized for not notifying us. Once again she wanted to reevaluate.  Once again she gave me the song and dance. Once again she is so sorry.  No.  I don't buy it.  The problem is the same.  The therapy was stopped. No one was notified. The functional maintenance plan was not followed.  Mother was simply dropped.  Is the head of therapy negligent, lazy, stupid or incompetent?  The nurse was not happy, and I am angry.

This is my sweet Mother .  She is completely dependent on someone else for everything except feeding her, and sometimes she needs help with that.  How can someone simply drop a therapy that is working?  How can doctor's orders not be followed?  How can someone not do her job and keep her job?  I am tired of excuses.  

This is the part of dementia that is sickening.  Someone takes advantage of the dementia patient.  They take the money for therapy, then drop the patient as soon as possible.  They can then charge for a reevaluation.  Not this time.  No more negligence.  If I have to check up on the therapy department every day, I will.  Mother has so little left.  I want her to function the best she can and without pain.  I just want to wrap her up and make sure she is safe and cared for.   I will not let Mother be treated this way.