Autism · Caritas · My world


My grandmother has been in the hospital for almost two weeks now.  She had and obstructed bowel that had to be surgically repaired, then the incision wasn’t healing properly and last night she had to have it operated on again to repair a small hole that was developing in her abdominal wall.   I have spent a good deal of time in the hospital  just hanging out with her.  She suffers from Alzheimer’s/dementia and is 86 years old.

Last month I was reading  A Child Called Noah and A Client Called Noah by Josh Greenfeld, which describes his family’s struggles dealing with their autistic son.  One of the lines that stick with me was Greenfeld’s description of his feelings with Noah.  He describes how, with a normal child when you do things together, there is the delicious feeling that one is storing up memories that will be pulled out in future years and enjoyed again and again.  With Noah there was not that feeling for Mr Greenfeld.  He felt that those things that happened with Noah were felting and vanished, there would be no echo of memory in the future of good times with a beloved father.  Not knowing Noah it is hard to say how accurate that view is, I know with Rachel, who is roughly at the same “place” on the autism scale as Noah, it is not that case that she doesn’t remember, it is just that time seems somehow less anchored for her.  Her lack of language doesn’t equal an inability to recall events, enjoy the moment or even anticipate something she desires, it just makes it more difficult for her to express those abstractions of memory, desire and hope.

It is very easy, since Rachel’s experience of time and events is somewhat “off” to say things like “Well, we will do Rachel’s birthday on Saturday because she doesn’t get that the 10th not the 14th is her birthday.”   And this is true.  Rachel is more than happy to celebrate a birthday or a holiday on an alternate day.  Her sense of anticipation doesn’t extend to checking the calendar and as long as cake is eaten, candles are lit and “Happy birthday” is sung the actual day doesn’t matter so much.  But her inability to anchor the memory or talk about it later doesn’t rob the event of significance.   It is still important.  A fact testified to by the way that Rachel is slave to routine, there must be cake eaten, candles lit and “Happy Birthday” sung in order for it to be a “Birthday.”  Rachel is very much a creature of the moment.  I hope that someday Rachel and I will meet in Heaven and share what all these things meant to us both.

My grandmother’s memories have lost their anchor.  She doesn’t know if it is 1958, 1985 or 2002.  She remembers people and relationships but there is no timeline.  For her it is perfectly sensible that she is staying with neighbors in the town she left in 1968 while talking to me about my daughter born in 2001. Her short term memory is most horribly effected.  She will not remember this evening that I was with her last night, she will be just as impressed with the sweater I am knitting for Hannah as she was the last 12 times she saw it and she will not remember what her surgery was for, how long she will need to recover or where she will go once she is discharged – we will talk about those things every 45 minutes or so.

If no one familiar is with her my grandmother not only loses her sense of time, but she seems to lose much more.  Paranoia and fear set in with the constant parade of the unfamiliar. The nurse has no place in her long term memory and with no short term memory granny has no way of placing the hospital staff into her current experience.  The staff is more than strangers, they are people who seem like they should be familiar, they call her by name and know details about her life, yet granny has no memory of having seen them before – this makes them seem threatening.  Especially in the evening when coupled with “sun-downing”  this lack of anything familiar aggravates the  “normal” emotional effects of Alzheimer’s and granny spirals down into a paranoid, depressed place where everyone loved and familiar has abandoned her and left her alone in a strange fog of unconnected experience. In the morning though the terror of the night before is gone, lost and unconnected to any memory.

It is very tempting  to say it doesn’t matter if someone is there or not because she will not remember.  But is memory the judge of what is important or does the importance of our actions lie in the moment as experienced?  Duty, that sense that she is my grandmother and I must be there for her, gives me a firm kick and says,  “go sit with her tonight because being there is what is important”.   Being there gives me a sense of importance in a way, a feeling that I am doing something worthwhile and somewhat noble.  It allows me to work through the complicated issues with my mother – I can very clearly see that it isn’t “just me” that falls second or third on her priorities, but  all relationships fall somewhat lower than prime in her priority list — where career is number one — and I can comfort myself, polish my somewhat bent halo, and note well and again that I am not doing what mom does.    I can’t help but  remember reading in psychology the perverse theory that all good things we do are in fact, no matter how unpleasant they might seem, actually attempts to gratify some internal need.  The martyr  proves their faith and fulfills their hopes in God even to death;  death is in fact more palatable than forsaking a faith in which they have invested so much of their self-concept.   C.S. Lewis muses on the “mother” in “The Great Divorce” where he speaks of the danger of a “mother-love” that becomes its own idol, the mother who loves through a sense of possession – that the child she claims to want only the best for becomes an expression of her own desire to feel needed, wanted and loved.

So, being human my motives aren’t pure, they cant be.   How can I ever completely separate the corporal work of mercy, visiting the sick,  from wondering if sitting with my grandmother is as much about storing up “karma”, setting up an example and expectation in my children that this is what family does? Will they internalize what the see me doing so that, at some point in the future, they will feel duty kicking them to come spend time with their aged mother?  Part of me doesn’t want to disappoint my grandfather, who passed away in 1994  – does he worry about his “little-bride” all alone at night? Is he glad that I am there?   Do angels sit with me and wait in this strange place, not quite in the Valley of Death but approaching it?  Will she look back when she is on the other side and think well of me?  While I am definitely there for her, I am also there for me and the hope that what I do is pleasing to God, my grandfather, my children and to the person I am meant to be but am not quite yet.

In the end none of my internal wanderings and even struggles  really matters — what matters is the current moment and the experience that we all are going through right now.   It doesn’t matter if she remembers last night, or Sunday, or who her nurse is or even where or when she is.  Granny needs a familiar face, a hand to hold, someone to hunt down a cup of ice or the nurse or adjust a pillow — most of all she needs someone to anchor her to her own experience.   Experience is more important in this sense than memory, for granny right now they are unconnected. In a way the memories are really mine.  They are really her’s also, but for the moment they can’t be her’s,  they are just mine and I hold onto them for her and I both in the hope and expectation that at some point we can share them again.