Not Going Under Caring for Someone with Alzheimer's --Who Gets Sacrificed?

            Yesterday when friends and I were getting together anyway, I asked that two of them sign as witnesses for my Advance Care Directive, which I wrote up after seeing Mom’s (and the wisdom of Mom’s) but never got properly signed. 

            Later, when we were at lunch, one of the witnesses brought up the French movie Amour, which is about what happens after a woman  makes her husband promise that he will keep her at home and care for her there no matter what.  The “no matter what”  begins to demand super-human sacrifices on the part of the husband.  When my friend was telling us about this movie, I thought of a true story in which the husband wound up killing his wife—out of love and in desperation.

            This brings up the question of sacrifice and how much we should sacrifice of ourselves to avoid sacrificing others…or how much we should sacrifice others to avoid sacrificing ourselves.

            In other words, it’s hard for me to believe that we ever left Mom there at Aegis the first day when it was pretty clear that, whatever her problems, she was in a more functional state than the other people there.  I’m amazed that she didn’t cry out.  I’m amazed that we didn't cry out.  I feel an agony now just feeling us leave, feeling relieved that she seemed to be making the transition so well.  Didn't we realize that, as she noticed, there really wasn't anyone she could talk to?

            Yet, I  know that we couldn’t cope. 

            I also know that my parents and the rest of us let David admit himself to Napa State Hospital in 1968 at the age of nineteen because we couldn’t cope. 

            They always say for the care-takers to put on their oxygen mask first before helping those depending on them.  So there’s one metaphor.  We needed to catch our breath between our visits with Mom.  Someone would go to see her every day, but most of every day she would be with people less functional than herself—if we consider “herself” as the best functioning of the various people she’d become—the mother and another and the others. 

            Mom once said that she thought it was criminal that my brother David had been put in classes in high school with much lower-functioning people than he was.  On wards at Napa, he was also often with people who were lower-functioning than he was.  And soon he was less-functioning than he had been when he was admitted.

            Mother and I were a team, going to see my brother the first thirty years he was at Napa State Hospital—when I was there to go with her.  But I was overseas most of the years between 1970 and 1976.  So she went alone.  She was active in parent-patient organizations.  She was a frequent visitor.  Once a psychologist asked her, “Do you feel guilty?” and she said, “Yes, of course, I do.”

            But I always understood that Mom didn’t want to have David institutionalized.  She wanted him to have a life in which some of his dreams came true.  But it was as if she had the choice between sacrificing her life and not really helping him or getting on with her own life and visiting him at a place where maybe he was getting helped or, if not, at least he was being kept safe.  Before Napa, he’d gotten in trouble living at home and gotten in even worse trouble living in community homes.  I see from a diary entry in 1968 that he was found on the freeway, disoriented and beaten up—either by himself during a seizure or by whoever wanted an easy victim.  He didn’t take his medicine when he was given freedom.  Next stop, Napa State Hospital.

            Whether we’re talking about oxygen masks or staying afloat in the water, the metaphor is corny but apt.  We weren’t willing to sacrifice ourselves for what seemed an impossible situation.  We felt we would go under if we tried to rescue someone else we loved.

            Mom had a lot of really good years, and a lot of her dreams did come true with Kathy.  We helped Kathy out some, but Kathy was the one whose life was affected every single day.

          So that day, March 29, 2011, Mom’s  first day at Aegis Living, after we set her up (!) and went over the collage with her and then hugged her and left her there, we were leaving Mom to cope the best she could…so we would not go under.
          I hated the parents in Lorenzo's Oil because I thought they were selfishly make their child suffer just because they needed him.  But Helen Keller is another case, and it makes me a little bit sad to know that if Helen Keller had been born in our family, she'd have remained a wild child or been institutionalized and sedated, but there would have been a "miracle worker" among us.