As most of you know, my mother is somewhere in the process of dying.   When I first accepted medical power of attorney for her, we talked about how she would want me to make decisions for her. She wanted me to first consider her comfort and quality of life.  For her, quality of life was mostly about getting to spend time with her loved ones.  Also, she didn’t want her life artificially prolonged.  As her caregiver, I’ve tried to think as she would have, if she could think for herself.

A few weeks ago she stopped talking.  She also began to look miserable, but without words she couldn’t tell me what was wrong.

Bit by bit I’ve been teasing out what the miserableness is, and what might help her to be more comfortable.  In this teasing out, I’ve been paying attention to what my body knows in this situation.  I hope that if I write a bit about how I’ve been doing that, it may help someone else in a similar situation.

First there was just the agonized feeling of helplessness, not knowing what was wrong and not knowing what to do.  After some basic self-care, I had to find a good relationship to that agonized helplessness.  It was important to neither shut it out, nor be swallowed up by it.

I didn’t want to shut it out because it’s the activity of my heart.  What is real in my heart right now, is the core of heartfelt action.  But if I’m swallowed up by what’s happening in my heart there’s no room for freedom of movement.  So it’s important to be in a good relationship to the activity of my heart.

To form this good relationship in the intensities of this particular time, I drew on a skill I’ve developed over time in other painful situations: the skill of being with myself as if the hurting place were a little child who had fallen down.  I keep the hurting one reassuring company while I go about my day.  (There’s more I could say about how I do this–but I’ll have to save that for another day so I don’t run out of room for the point of this post.

Next came a willingness not to assume anything.  She had stopped eating and had been prescribed an appetite stimulant: was this the right way?  Was eating now traumatic for her?  Was it time to stop eating, or was it just that her mind didn’t quite know how, anymore?  I kept thinking about how she didn’t want her life to be artificially prolonged… were we now doing that?

The next morning I woke with the feeling, ‘just go and observe.’ Usually when I visit I talk to her about what is happening with her loved ones, and tell her things that might help her orient a bit.  I was always so engaged in trying to communicate and offer her comfort, that there had been no room just to sit and watch and take in what I saw.

But now, I could see that I needed to discover things I didn’t know. For instance, I wanted to know how she looked at mealtimes.  Did she look like she was being forced to do something that was no longer right for her?  Should she maybe be allowed to just stop eating and drinking, and go through the next steps of dying?

Getting beyond these questions, though, I realized that I just wanted to watch with as few preconceptions as possible, and see what happened.

So I went, and sat quietly, nearly as though I were meditating and the happenings in the room were each just the next thing arising. When the nurse came in, I told her I was ‘just observing’.  I named the problem: “she’s not communicating, and she looks miserable.”  Then I moved to a chair across the room to be out of the way while the nurse did whatever she’d come to do.

She asked my mother a question: “are you feeling okay?”  She asked it routinely, almost rhetorically, as she kept on with what she was doing.  My mother didn’t respond.

The nurse looked over at me, stopped what she was doing and tried asking again.  Then I saw it start to register that my mother wasn’t able to talk.  At that point the nurse started to ask other questions,to investigate that dawning awareness.   (I’d mentioned my concern to her before, but not while she was in the room with my mother.  So before, she’d responded to me from her idea of how my mother was, instead of her own direct observation in the moment.)

Now the nurse began to be present in the room.  She told me that she’d been meaning to tell me that my mother hadn’t been able to swallow her supplements since she got back from the hospital six weeks ago.  She wondered whether the doctor might just stop prescribing them since she couldn’t take them.  Here was another bit of information.

(All this may sound like the nurse didn’t really care–but this isn’t true.  I know her to care about my mother; I’ve heard it in her voice in the past.  It’s just that she’s really really busy and some kinds of knowing need time to slow down before they become available: time she doesn’t have.)

When the nurse left, I moved back to my close position and just sat and watched.  I told my mother that I knew she couldn’t tell me what was wrong, and I was trying to figure it out by observing.

(In theory this is too difficult a thought for someone with advanced Alzheimer’s to follow. But I’ve found that some complex ideas do get through, and if she was able to take in that message maybe she would feel some comfort from it.  This is one place where keeping an open place for my heart’s activity encouraged me do something that I might not have thought to do, had I pushed the feelings away.)

It started to dawn on me that her skin looked kind of crepey.  She had just been given a liter of fluid by IV a day before, so that dry crepey-ness seemed out of place.  Her skin has always looked beautiful, and I realized that the way her skin looks is one way she can still communicate.  Her skin looked dry. Even after that liter of fluid, it still looked dry.

At lunch, I paid attention to how she was drinking.  She drank readily when offered something. (She also looked peaceful as they fed her–which answered my first question.)

Later, thinking back on everything I’d seen, I realized the cup in her room was sitting upside down next to the water pitcher.  And that the nurse hadn’t offered her water when she was in.  Nor had the aides.

Now it was the weekend–different nurse.  I talked to her about dehydration.  She said, “the staff is supposed to be offering her water whenever they change her.”  Light dawned: if you tell the aides to offer fluid when they’ve just had the job of changing the patient, and they’re already overworked, how easy it is to quite genuinely forget to offer the patient fluids which will just add to the workload!

So the weekend nurse and I talked about what to do.  She said she could focus on it on the weekend when she was there in charge, but not during the week.  But she was wise to the ways of the institution, and she had a brainstorm: if my mother were on a catheter, they would be monitoring fluid intake and output.  Even without a catheter, the doctor could still order them to track it.  That record keeping would remind them to give her fluid.

So I called her doctor and arranged it, and after several days her skin began to look more plump again.

There were other strands of my observations which I’ve not mentioned here, and which I worked with similarly–but this post is getting long so I won’t go into more detail.  I hope that the way the process unfolded is now clear enough to maybe be helpful to someone else.

If you’re in a similar situation and this post has given rise to questions I might be able to answer, please feel free to ask them in the comments below.  I’ll do my best!

some thoughts about chapter 1 of the Tao Te Ching

So what is tao anyway?

Well… we both can and can’t say what it is.  Because among other things, tao is where we are, who we are, and where we’re going.

It’s about our path. And at the same time as we know that path…
we also don’t know it.

As soon as we think we’ve got it down,
we haven’t.

When we think we’ve got it down, it’s a sign that it’s time to step away from that story about our lives which our desires have laid out 123, and feel the whole big unknowable unnamable vastness that refuses to be contained in any story.

Because if we get attached to ‘the’ story of our path, we’ll end up losing our way. That story isn’t the path, and life will show us that fact very soon.

But on the other hand, if all we do is just contemplate the vast wondrous unknowability of life, then we aren’t going anywhere.  And that doesn’t work so well, either.

But if the story doesn’t work, and not having a story doesn’t work either, how do we know where to go?

By paying attention to our desire before the story.
Not the ‘hooked’ kind of desire, not the ‘I want a piece of chocolate’ kind…
but the deep deep quiet yearning towards…

…something that is more than the words we can say about it.

…something that’s right here, if we make the turn towards it, slow down, listen… feel…

…and then move. –A little, questing, experimental-but-certain move that fits this moment, and this creature which we are…

…a creature that is just what it is, in a world that is also just what it is, at this and no other moment.

I’m a creature before any names for me, capable of experiencing the world before any names for it.  In that before-ness, I’m free.

But also, I’m: kye-who-lives-at-the-corner-of-broadway-and-edgewood.  Because without a name and address, how will I get my mail?

This morning it’s raining.  It’s a gentle day: the rain is gentle, as is the slight cool of the air.

A walk in the rain might have been nice, but I was drawn towards sitting meditation instead.  I’ve been moving at a steady clip all week. My body in its wisdom knew that a deliberate pause for a few minutes now, would give my movement a more generous space.

So I sit.

And I notice.

First I notice that I am nearly in here with my experience, but not quite.  I just notice it, I don’t force anything… I let it be just as it was before, except noticed.

Then I notice that my shoulders are pulled forward a bit.  As soon as I notice, they want to move up, and back, and drop.  The space in my chest becomes more generous.

And I sit.  And notice.

Ah, what’s this going on on my left side?  It’s pulled down more on that side. What would it like there?  …to relax up, rib by rib. and then open below the ribs.  I feel like an accordian pulling open on the left.  Now things feel more even and upright.

But not quite!  I’m slanted back just a tiny bit from straight-up-and-down.  It’s my chest that’s back behind my waist.  As I watch, it comes forward just a tiiiiiny bit.  Mmmm, that feels solid and good.  My breathing slows now that there’s more room for it.  I slow, as my breathing slows.

I sit a few minutes more, savoring my alignment, and my breath, and my pace.

And at last I rise, bringing this new pace into the movement of the day.

[Yesterday in my post about restorative walking, I mentioned ‘emptying the shoulders’ in passing.  A reader picked up on the phrase and commented on it, which prompted me to write more about it today.]

Notice how your shoulders feel right now.

If you’re really lucky, they may feel like you haven’t got a care in the world.  But for most of us, there will be tension.

Exactly what that tension feels like, will be different for each person, different even day to day.  The imagery that goes with emptying your shoulders of tension will be different too.

For some people the experience of tension in the shoulders might feel like a hot fullness.  For others it might be a feeling of heaviness.  For someone else, the shoulders might feel frozen.  Another might experience it as a tight pain.

My reader from yesterday had a lovely image of letting the tension drain out like a hot liquid.

For someone who experiences it as heaviness, it might feel good to visualize removing a heavy backpack.

For someone whose shoulders feel really frozen and tight, emptying the shoulders might feel like letting them melt and become fluid.

If you start by feeling how it is in your shoulders right now, then you can invite the right way of emptying them to come to you.  Don’t think it out.  Just let your curiosity play a little: ‘I wonder how…’.  Leave a little open space for the question while you stay with the feeling as it is.

I’m paying attention to my own shoulders right now.  The feeling is a little prickly.  I see an image of a burr.

I wait for a moment with that image and the sensation that goes with it…

I see myself picking burrs out of a sweater.  A grey sweater.  (The imagery can be vey specific and the little details can be oddly powerful.  Something about it being a sweater, and grey, is right for this moment so I take it in just like that.)

The image comes of someone sitting behind me, picking burrs out of the grey sweater across my shoulders.  Lots of little burrs.  It feels great!

I’m stretchng, and yawning.

Last week I nearly lost my sister.  She was not a good candidate for surgery, in a life-threatening situation.  The hospital staff tried everything they could think of all week, to get the problem to resolve without surgery.  But it didn’t, and she was running out of time.

So, Thursday night the surgeon went ahead.  I thought ‘this is it.’

…And she pulled through.  Even fragile bodies can be incredibly strong.

This week, I have the flu.  It’s not surprising.  Lots of people here are getting it.  Even strong bodies can be incredibly fragile.

I’m seeing it as a good thing.  Bodies know when it’s time for a rest.

Back soon!