The Mother-Daughter Talk

     What am I going to do about Mother?
     She has suffered a series of small strokes, leading to aphasia and dementia. Years of severe rheumatoid arthritis have left her unable to walk. Although she recognizes us, family members, friends and caregivers, she lives largely in her own little world.

Mom w/ great-granddaughter, 1996

     It's mostly a happy world.  She is cheerful and friendly.  She loves all the staff at the nursing home where she lives – and they all love her.
     But Mom's world is often several steps removed from reality.  It's never clear if she really understands what you're saying to her.  Her attention span is incredibly short. She doesn't understand and cannot follow directions.  She no longer knows what her call button is for. She falls because she forgets she can't walk and tries to get out of bed by herself.  And while she is mostly happy, she sometimes gets frustrated, agitated and distressed.
     And she doesn't know I have ALS.
     That's not because of any of her problems. It's because of my problem – I haven't told her yet.
     I don't know how. I don't even know whether.... Right after my diagnosis, we decided (myself, my husband and Mom's caregivers) not to tell her right away. My symptoms weren't too obvious, and we wanted to avoid upsetting her.
     She would have been upset, that's certain.  She has already lost one daughter – my sister died in a car crash 15 years ago,  and it nearly destroyed Mom. She said she couldn't imagine anything worse, or more unnatural, than for a parent to outlive a child.   So how can I tell her that she might now  outlive one more?
     I have to. I can no longer hide the fact that there is something physically wrong with me. I can no longer pretend that she doesn't deserve to know. I can no longer ignore the way this pretending is taking a toll on me. I know I have to tell her – I just don't know how.
     I don't know how she'll react. Will she get distraught and agitated and tearful? Possibly. Will my words just roll by unrecognized, their import unabsorbed? Probably. Will some last little bit of my "real" mother appear to hold me and comfort me and share our sorrow?  No.
      That probably explains my reluctance better than anything else. I want the comfort only a mother can provide. I wanted her to pat my hand and say " There, there" and wipe my tears. I want my "real" mother back.
      And I want the real me back, too.