when words fail: quality of life at the end of life

by kye on April 20, 2010

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!

  • Sandy_Powers

    Kye, thank you for sharing this. I went thru a very similar journey in saying good-bye to my own mom who had alzheimers a few years ago. I had a co-worker who had been through it with her mom, and her experience and counsel helped me so much as I went thru it. I know that there are also others who will find comfort in your journey and the eloquent way you share it. I will keep you and your mom in my prayers.

    And p.s. I do look forward to hearing more about how you “keep the hurting one reassuring company while you go about your day” That tapped into something that I know will be an excellent read for me!

  • kye

    Sandy, thanks. I do hope that it might help someone else at some point.

    And, I'll write more about how I keep the hurting one company–thanks for the invitation!

  • http://www.agemyths.com Madeleine

    Kye, This is fascinating in a disturbing way. I have read 3 or 4 books by doctors who emphsize how important it is to keep watch when a loved one is in the hospital. So many people are involved in the care, and often coordination is not so good. It's wonderful that you were able to sit quietly and look for clues and even more wonderful that by doing this you learned what you needed to know. Your mother is fortunate to have a daughter like you.

    I think this post will help many others struggling with end-of-life care for a parent.

  • kye

    Madeleine, yes, really important in a hospital–and even more important in long term care situations. So little of the process of dying actually usually happens in hospitals now–insurance companies see to it that the patient is discharged as soon as humanly possible. They are often sent to rehab facilities or other nursing homes because the level of care still needed is way beyond the capacities of most families. I've found that this is a much more difficult environment to negotiate. In some ways it's better than a hospital, in other ways not.

    It is a disturbing subject, sometimes I wonder if it's more than people who read this blog would really want to bite off. My hope is that it may also give a sense of relief to some people at least, a feeling of being a little more oriented in a situation that can be very hard to understand, especially at first.

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