Lack of Understanding

Today is Wednesday.  I remembered!  And my kids pulled the word prompt out of the jar so I could prepare for One Word Wednesday on my little caregiving website.  And I felt a bit overwhelmed. 

This week's word is UNDERSTANDING.  And I am going to have to share this terrible, awful thing that is going on around our home since mom got back from rehab.

Every caregiver knows that each stay in rehab or the hospital takes a big chunk of their loved one away and never returns it.  With Alzheimer's, it immediately drops the plateau.  Their ability to remember or perform activities.  Each illness is followed by a new, lower baseline.

And for mom, each stay alters her personality.  And she rarely goes back to what was her "norm" before she got sick.  It becomes something new for us to deal with and live with and cope with and respond to.

This time, mom has become a victim.  One of the "poor me" people (that's what Daddy used to call me when I was feeling sorry for myself).  No one wants to help her (even if we've just tried).  No one listens to her (even if we've just spent 10 minutes answering the same question and finally had to walk away before dinner burns up or to turn off the water before the sink overflows).  No one cares about her (and that is 2000 words for another time).

All of that is hurtful, but I can deal with it.  I know how to talk myself through hurtful words most of the time.  I don't love it and I can promise you I am not always the dalai lama and have muttered some pretty ugly things under my breath, but I can handle it.

But she is now whimpering and crying a lot about her inability to remember things.  She doesn't UNDERSTAND.  And she no longer has the faculties to understand my explanations.  She can no longer remember the question she has asked by the time I have offered her the answer.  It is a vicious circle.  And it is almost unbearable.

To watch your mother reduced to whimpering.  To see such frustration that it brings her to tears and those deep sobs that shake her entire body.  To see, after all these years of trying to pretend she was "fine", that she knows she is not.  It is tearing me up inside.

"I don't understand why this is happening to me!" she will cry out.  "Why does God have to do this to me...I don't UNDERSTAND!".   "It's not a very nice thing to have happen to you.  Is it?" 

I used to tell her she has Alzheimer's.  But she fought so hard to ignore her reality early in her disease, that she never bothered to research or accept what Alzheimer's is.  And now it's impossible for her to learn anything new - even if she is living in the middle of it every day.

So then I said she had a brain disease.  I thought that sounded worse, but at least for a while, she could understand.  But after this last stint away from home.  That no longer soothes her.  Those words don't bring her any understanding.

Now I just say, I don't know.  I tell her everyone has a different way of aging.  Some people lose their ability to walk and have to be in a wheelchair.  And some people get cancer and lose their hair.  And some people lose their sight or their hearing.  And some people forget things. 

This is working for now.  It calms her down when she is agitated because she can't remember a name or a word or what her mother looked like.  It makes her less weepy.  It makes her feel less different.  It makes her less embarrassed.  It helps her stop crying.  For now, it brings her some understanding.  And for now, that is all I can ask for.