Reality Bites

I had this nightmare a few weeks ago in which my brother had schizophrenia and my mom had Alzheimer's.  I woke up and thought, "Wait, this is true."

While my brother's schizophrenia has been known to us for years, my mom's diagnosis with Alzheimer's came a year ago.  In the past few weeks, she has moved from the early to the intermediate stage.  She and my dad went on vacation in February.  In this unfamiliar place, she forgot she was married to my father.  She told him she had a daughter, as if he were a new found friend.  My dad said it was like they were dating.  She remembered that she loved him, but did not remember how he fit into her life.  When she asked him where he lived, he was devastated.  I can't blame him.  His life partner of 47 years did not remember the full extent of their relationship.

Early on, she would forget things she was just told and repeat things in conversation.  A few years ago, before she was diagnosed, she went back to Chicago for her high school reunion.  I asked her what year reunion it was.  I should have guessed it was her fiftieth.  I didn't guess, so I asked her.  She couldn't remember this major milestone.  It is one thing to forget how long ago she graduated from high school.   Not remembering she is married to my father is a new level of deterioration.

I was thinking about other forms of demise: heart failure, liver failure, kidney failure.  Alzheimer's is a slow cooker form of brain failure whereas aneurysms are a microwave, and tumor would be a cooktop.  While my dad thinks she is still the same person, I can't imagine how she will continue to be.  We need to lose some memory to function.  People with perfect recall have difficult and complicated lives, unable to prune away the mundane and forgettable.  Nevertheless, we need a reasonable amount of memory.  Rene Descartes said "I think, therefore I am."  What happens when you can't think?  What if you forget who you were and are?  What if you don't know where you are when you are home?  And then it gets worse, to the point where there is nothing there, nobody's home.  Yet, the heart, the lungs and everything might work just fine.  I can't think of a disease more insidious.

My father tells me she is still the same person with the same sense of humor.  I believe him to a point.  My dad most certainly sees this glass as half full, but there is a fine line between optimism and denial.  I don't necessarily think he is in denial; rather, he and I might have a different definition of what being the same means.  I don't think she has undergone a complete personality overhaul, but I can't see how someone for whom blocks of time have been erased can be the same.  We are shaped by our experiences -- what happens when we can't remember them?  Maybe I am wrong on this.  A friend of mine whose mom also suffers from Alzheimer's said the short-term memory fails, but the subliminal part of the mind keeps working.  If the person had a pleasant afternoon cooking or painting, the good mood developed in the act of creating will last all afternoon, even if the memory of what they made is gone.  Maybe all of those experience have helped her keep the shape of her soul, even if she can't remember the specifics.  I suppose much of one's childhood is forgotten, but it shapes us nonetheless.  I suppose that is what keeps my father going--he can still she the shape of her even if the details are getting fuzzy.  While he can't fix her memory, he can still try to make her happy.

Last weekend, John and I went to Elliott Bay Books where we heard a reading from Into the Storm: Journeys with Alzheimer's, an anthology on Alzheimer's edited by Seattle writer Collin Tong.  We heard from four contributors: two were spouses and two were children of people who contracted this horrid disease.  They talked about the decade or so watching their spouses and parents slowly slip away.  The final years were marked by complete lack of awareness.  One woman said she never felt so alone as when she visited her mother.  The mother did not acknowledge that another person was in the room, let alone recognize her daughter.

I was not prepared to hear about the long, dark road.  I was not prepared to hear about the level of suffering, where family members spent years caring for a spouse or parent 24/7.   Like mental illness, Alzheimer's has just as big of an impact on the loved ones as it does on the afflicted.  While I feel bad for my mother as she is losing her memory, I feel worse for my father who has to bear witness.  He will lose his wife long before she dies.  My parents are a few years away from their 50th wedding anniversary.  Both sets of my grandparents made it to this milestone.  How will my dad feel when it rolls around and his wife will likely still be alive, but not present or aware of the event?  I try not to think about it but then it comes back.  I was reading Les Miserables this morning and came across a line:  "In this troubled state of mind, he barely gave a thought to certain serious aspects of existence.  But the realities of life do not let themselves be forgotten.  They suddenly came and gave him a sharp nudge."

I am not sure I am ready to cope with this.  Like most other tragic events, we don't choose the timing or the fact they have occurred at all.  When I stare into the abyss of what is to come, I pull myself back to my other reality, the one where I count my blessings and look at my kids and life in Seattle and am thankful for all that I have.  Yet, now I have two members of my family who have a very loose grip on reality.  My brother has been chased by demons, and I in no way envy his plight.  Alzheimer's comes with a silver lining, small though it is: at times the people who suffer from it are not aware they suffer.  I wish the same could be said for their loved ones who are fully awake and aware of what is happening.