Whatever The Day Brings

I don't know how to reply to some of the comments I hear from people who do not understand what it is to care for an aging parent with Alzheimer Disease.  One person told me recently that a person with Alzheimer Disease should always be happy because they have no stress. That statement is reflective of the misconception so many people have about this disease.  There is no way to explain the impact Alzheimer Disease has on it's victim or on the families.  With Alzheimer Disease, the victim dies twice.  The first death occurs as they fade into a shadow of the person that they were but it doesn't stop there.  Eventually they cannot remember how to swallow,  talk, breathe and then the body shuts down until they experience a physical death.

I go to see mom several times a week to do her laundry, shopping, and take her for hair cuts etc.  A few weeks ago I arrived and she was very upset because she could not find my father. She said that she had been looking for him everywhere but she couldn't remember where to find him. I sat her down and gently told her that dad passed away twenty five years ago and then let her cry on my shoulder as she grieved all over again.  A few days ago she was upset because my brother hadn't called. Again I had to gently explain that he passed away in 1997.  Once again I just sat by and supported her as she grieved for  a son who died sixteen years before.  Finally she looked up at  me and said, "I know my memory isn't good but I think sometimes we forget some things because they hurt the most."  I cried all the way home both times. 

Of course there are other  times when I can't help but smile.  Recently, my sister put together a small photo album for mom so she can continuously see the faces of her family.  I thought this was a wonderful idea so I brought over a box of pictures. Mom and I went through the photos and she selected a few photos that she wanted to put out in frames.  A few days later I found some nice  frames and purchased them for the photos she had chosen as her favorites.  On my next visit mom helped me put the photos in the frames and she then placed them throughout her apartment.  Once we were finished, my mother got up to get something and, as she reentered the room, she spotted one of the frames that she had just helped me with.  She got so excited and joyfully exclaimed “Where did that come from! How wonderful!”  She went to the table where the picture was sitting and talked about the day the picture was taken. She was completely oblivious to the fact that she helped me put the photo in the frame just moments before.  As she turned from the table she saw one of the other pictures sitting in a different part of the room and joyfully exclaimed “Where did that come from! How wonderful!”  She then went to the table where that picture was sitting and talked endlessly about that picture and as began to walk back toward the couch she saw the first picture and was absolutely delighted as she said “Where did that come from!  This is wonderful!”  I sat back and happily watched the pleasure in her face  as she discovered the same pictures repeatedly for the first time over and over again. I decided that the picture frames were a wise investment because this will both entertain and bring her joy for days.  I smiled all of the way home.

As I watch my mother make this journey with Alzheimer Disease it reminds me of taking a solitary walk on a cloudy day.  There are no guarantees of what the day will bring.  I could get rain, I could get rainbows, or I maybe I will simply find a small measure of joy watching my mother get excited as she gets the first glimpse of a family photo for the hundredth time that day.