On The Exit Ramp...

B took an unexpected trip to see his nearly 91 year old mother last weekend at the Care Facility in New Mexico, near her daughter, where she has been now for more than a year.  She is what he calls – “on the exit ramp.”  She is not “dying” at this moment in time – although we weren’t sure, as she had recently been hospitalized, the body possibly shutting down, and we thought this might have been it.   Still, she is clearly on the exit ramp of life.   She was diagnosed with Alzheimer’s several years ago.  She still recognizes her son, and remembered who I was, even though I was not there on this trip.  But there was no enthusiasm in the recognition as in previous visits this past year… 

The first day he just sat with her at her bedside for hours as she slept.  The staff would get her up to eat her meals in the dining hall – via wheelchair, but she kept her eyes closed – not engaging.  There is no emotional expression anymore, except a look of confusion or worry.  She appeared to be on automatic, as if blank, withdrawn into herself.  Sometimes there were glimmers of understanding, sometimes not…  And yet, she seems to be *aware* at some level.  She cannot hear, has a Cochlear implant – which helps, but not completely.  She would occasionally open her eyes to see if he was still there – but was otherwise unresponsive – less engaged; although, she has learned some simple sign language with a couple of members of the staff, and seems to respond to them, which was surprising…

And we wonder, has she truly reached the end of her life, or does she have many more years living like this… Of course nobody really knows…

In one of B’s communiqués to me, in response to my question about how he was feeling about all this, he wrote:

Acceptance of her present place and behavior on the exit ramp.

Yes, of course, acceptance of where she is, and whatever behavior she is displaying on the exit ramp, without trying to *make* her respond, or converse, or be what *he* wants her to be.  And so he sat, quietly, in her wheelchair next to the bed, just being present, silently reading his Kindle as she slept…  The only question she asked: Are you going to be here?  We think she meant, when she woke up.  Maybe this is why he wanted to go alone.   So he could fully *be* there, be fully present, without distraction…

On the second day she was roaming the halls in her wheelchair when he arrived. He was quickly in tow, following behind as she walked the wheelchair, until she was ready to go back to bed.  In the photo below she is taking a break and seems to have fallen asleep again… Yet, we aren’t sure if she is truly sleeping, or just turning inward – disengaging from the world…  “But where does she go?” – my sister-in-law asked…

B continues to amaze me with his wisdom in this situation.  I don’t know why it amazes me, it just does.  Perhaps because it’s usually what *I* need to hear.  He reminded me through this visit with his mother that it is about learning to see how life plays itself out from the perspective of the Eternal Being that we are – that embodies the body; that is non-reactive to, and non-judgmental of what is happening, but is just Aware…  And this is the key, to always return to this internal space of *Awareness* of the Eternal Being that we all are.  That no matter what life dramas/events we are entwined in/with, we can return to that place of Silent Awareness within.  Our Eternal Being accepts every situation and others with a sense of openness and curiosity, with a sense of compassion, with no need to “fix” it/them – *allowing* everything.  I know this is true…  I just need reminders…  And it doesn’t mean that one doesn’t *feel* anything about what is happening either.  Even the feelings are allowed to play themselves out.  I learn so much when I actually *listen* to him. J  When I’m on the “exit ramp” I want him sitting by my side to usher me across the threshold…  But of course, we’re all already on the “exit ramp” aren’t we… J - some just further along than others…

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…