Her eyes opened, and opened all the way, and stayed open. I said, “this is your daughter, this is Kye” and she nodded once, decisively: “I know that,” said her nod. “Would you like me to tell you the news, or sit quietly with you?” No response. I considered. What was there to lose? I started talking.

Her eyes stayed on mine with total attention. When the news was the kind she likes (“I’m going to go up to see M. this week.”) her face would melt into a quiet little beam. When it was said news (“there’s been a terrible oil spill in the Gulf,” and “the economy is not good”) her forehead creased in distress. She was awake; she knew me; she was there.

Forty-five minutes later? an hour? I asked, “have I worn out your brain?” A rusty little “No” came in response–the first speech I’ve heard in a couple of months. So I told her about what I’m writing (the Tao Te Ching commentary), and her mouth made an ‘oh!’ shape, and she she smiled.

There’s no telling what I’ll find next time I go, but what a miracle and a gift that time was!

The feelings of those who are caregivers to the dying can be challenging.  It’s important to have ways of working with these feelings and moving beyond them, rather than ignoring them.  When the feelings are dealt with, it liberates energy for coping with the situation, and evens out the ups and downs of daily life.

Here is an example of how it can look when I’m working, myself, with the feelings brought up in caring for my mother:

The last few weeks, sometimes I’ve been waking up breathing oddly.

I had thought maybe it had to do with limits that have been strained.  I cut back some, and the last several days my breathing had been fine when I woke.

Then this morning, there it was again.  So, I lay quietly in bed and began to explore it, curious.

It began to feel like some kind of fear.  I stayed inside the precise outlines of this funny-breath fear  …not swallowed up by it, but instead, experiencing it while also knowing that I am more than this sensation and this emotion.

It was what was here right now.  I also noticed more:  a sunny day with bright light pouring through the window; the sounds of traffic and birds; the feeling of lying in bed.  All this (and more) was my experience at that moment.

I began to notice that the exact way my breath was not releasing was not only an afraidness but was also a holding back of tears… the tears I had held back each time I went to see my mother, so that I wouldn’t distress her.   My body was faithfully holding those tears for me.

I let them flow as they wanted to.  My caring began to wake up and circle itself instinctively around my own back, comforting the teary one.  And now the curiosity became a tender ‘what’s wrong?’

In the presence of that tender attention my tearful funny-breathing fearful one could begin to open up about the fear.

…Oh!  It’s about my mother’s breathing!  She is having a tiny bit more trouble with her breathing now, and when she coughs her face looks pained.  I hadn’t realized how horrified I’ve been, watching her slowly losing her lung capacity.

I notice how afraid I am of suffocation, drowning, strangulation.  This fear is something I’ve carried with me going all the way back to birth and a cord-wrapped neck.   I’ve been laying this old primal fear on top of what’s happening with her.

My tenderness for the one who’s been carrying this, grows.

And now I remember what I actually saw yesterday.   She was asleep almost the whole time I was with her.  Except for when she coughed, her face looked very much at ease.

She never looked distressed.  I was still carrying the distress of a few weeks ago, mixed with my own primal fear.  But she was peaceful.  This teary one who was afraid for her, who had been on watch through the night with her… this one could rest from that particular labor.

My lungs opened, and I took a deep breath.

Right now I am breathing, I can breathe… and so can she.  What a shame it would have been to miss experiencing these precious breaths.

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!

Nearly six months ago I descended into one of life’s winter seasons.  My mother and sister had already been very fragile for several years.  Then last autumn, my sister’s husband had a heart attack and became mostly disabled too.

My mother lives in the same city I do, but my sister lives a thousand miles away.  Trying to support my loved ones in both places, I’ve felt extremely inadequate to the task.  Guilt has been my daily companion as I’ve tried my best to balance regular daily life, the extraordinary needs of my family which I couldn’t begin to meet, and also enough self-care to keep myself in decent running order.

My creative life dropped into the far background.  I’ve not been to my studio in months; and this blog has received little attention.  This seemed necessary for a while, but a point comes when the inner well needs a more profound kind of replenishment than that offered by time at the farmer’s market on Saturday, or reading a few pages at bedtime, or appreciating the small blessings of the present moment.

At the peak of this season of challenges, my hard drive crashed and had to be replaced, at the same time as all three of my ailing ones landed in the hospital.  I felt incredibly overstretched and responded by dropping an exciting new project that felt ‘optional’.  But after that I began to get sick–first the flu, then, a week and a half ago, scarlet fever.

That, finally, stopped me in my tracks.  I couldn’t do anything for anyone.  I ate takeout sushi instead of cooking.  The dishes piled up.  After the first couple of days in bed I began to pick up tiny tasks related to my dropped project. A missing energy began to glimmer.

Yesterday, I emerged into the springtime.  My son and I went on a ‘playing hooky’ kind of errand.  The redbud and mountain laurel were in full bloom and the new green everywhere was so beautiful that it still brings a mist to my eyes to think of it.  We stopped by my studio and I brought several panels back home to live with.  I became ravenous for vegetables and made a big pot of vegetarian chili for supper.  My vitality soared.

And today, I’m writing.  My heart is full.

What gives meaning is not optional.  It’s where we gain our strength.