Reflections - Alzheimer's

Our time visiting with B’s mother last weekend was poignant.  It went much better than expected.  We had been told by family members that she was unable to see, hear, and was pretty much withdrawn into herself, having been diagnosed with "Alzheimer's."  We were unexpectedly surprised, as she was quite coherent – recognizing both B and me.  “She” was not absent, not blank.  She could see, not well, but well enough to recognize us, and could read large letters on her birthday cards.  She could hear with the aid of her cochlear implant, although it was intermittent.  We soon let go of the imposed label of “Alzheimer's” and just experienced her as she was – engaging with her as she was – not having expectations for how she was supposed to be – either way – coherent or confused.

We had been instructed by family members that it was okay to ask her questions, but we found that barraging her with questions to see what she could remember was unnecessary.  There were many things she remembered. Instead, after an initial barrage of questions, we just sat there with her, quietly, just being present with her, enjoying the silence without expectation of interaction.  B and I sat across from each other while his mother gently rolled back and forth in her wheelchair between us; which I found interesting behavior.    Before long she spoke, saying she had to be in the care center (which she thought was a hospital) until she got “better” (meaning until her broken arm had healed – which it has) but did’t think she would get out of there.  She said she just wanted to go home.   She wanted to know if she could come live with us…  We were told that Alzheimer’s patients do that.  They want to leave (escape) and go “home” – wherever “home” is in their minds.  But we were struck by her question.  It was deliberate and pointed right at B.   She turned away from me as if I wouldn’t hear, and asked: Can I come live with you?  Oh dear… What do you do with that!

It was quite clear from our time with her that although she clearly had diminished capacity, memory, and had moments of confusion – often asking if her mother was going to come to her birthday party, and repeatedly asking us how long we were going to be there, she also was quite *aware* and knew exactly what she did and *didn’t* want.  Had she lost connection with herself?  It didn’t appear so to us.  Her personality was still quite in tact, including mannerisms of speech and nuance of affect that I clearly remember. 

Her birthday party was filled with laughter, as she quipped that she was surprised that she had lived that long, hoping that she would have more birthdays “here” (in the care center).  You could see the pleasure as well as the lostness on her face.  Interesting. 

On our last evening there, after an agitating incident in which I innocently tried to get her to eat her dinner, she told me I should go have dinner and come back later, then closed her eyes and withdrew somewhere into herself, and rapidly rolled her wheelchair back and forth at the table, occasionally peeking to see if I was still there.  I began to wonder if it would be better if I left the room.  This went on for nearly an hour.  They said she was soothing herself with this movement.  But what was she agitated about – was it the loss of control, being directed to eat when she didn’t want to.   She was clearly angry.  Was she not able to handle the emotion, and this was her way of soothing it – like an autistic child?  Who can say…

Later, we each went to her to tell her that we were leaving.  When it came my turn, I was tentative as I bent down, looked in her eyes and said I was leaving.  With sad eyes she said, you’re leaving with B aren’t you… as if she had remembered that we were leaving the next day, resigned to the fact of our departure.  Once again I was surprised.  She lifted her hand and placed it on my face as we stared into each other’s eyes.  A poignant moment of connection…  Someone is still “home”…

Photo:
An unfinished mandala,
like an unfinished life…