loss of control“The truth is, when you were young, you tied your own belt and went where you wanted, but when you are old, you will put out your hands, and someone else will tie your belt. They will lead you where you don’t want to go” (John 21:18).

I woke up to bright light streaming in my window and bird song telling me
this is another day to be joyous and thankful for life.  I thought of Ed, who didn’t wake up today; yesterday was his last.  He had spent a difficult day less than a week ago, wanting “to do something for this to be over”, thinking if he could just end his life quickly how much easier things would be.  He had told me “I didn’t have the guts to do it” though we had reframed this and spoken of the courage it took to live each day.  He began to die in actuality only two days after his “suicide attempt” (In fact, it had perhaps been his way of recognizing he would be turning down an irreversible path very soon, and only wanted to hasten the journey).

He had held out his hands, and was led exactly where he didn’t want to go.  We had several earnest conversations; he had shared fears with me those last weeks, about the part of dying that causes everyone to tremble: the physical act of losing all control, of our bodies becoming unmanageable, of becoming burdensome to loved ones, or of being put aside when the care was too significant a burden.  Ed had been a military man, in charge, in control, and shared how difficult it was to have others do for him; eventually unable to rise up, say no, or move his worn out body from his chair.

This reality, of no longer taking ourselves where we will, of becoming dependent, is what I see as the most dread part of the dying experience.  I suspect this is also my own deep seated fear, as I am aware of how often I have heard someone say “I want it to be over”…this state of total vulnerability.  It is what no manner of medication nor careful preparation will remedy; we will in fact NOT be in charge of the end, someone else will do this for us.

We talk a lot about choices at the end of life.  But some things will not be within the realm of choice for us.   It is why I want to listen carefully and advocate for others, as they travel down the road of disablement and dying, so that when the time comes, as much as possible, though none of us really want to go in that direction, (dying), we may be able have the specific room, the favorite chair, the company surrounding us, and the time appointed be as peaceful and fulfilling as possible.

The sun is shining, birds are soaring, the air smells of salt and sea and sweet grass, and Ed is no longer struggling with his heavy burden, or the way to go, or how to get there.

About Amy Getter

This entry was posted in advocacy; patient rights; hospice nurse, end of life care, Wishes and tagged , . Bookmark the permalink.

5 Responses to BEING LED

  1. What a poignant post, and an excellent reminder that we do listen. Whether you’re a healthcare practitioner or the person whose loved one is dying, sometimes there is nothing more to do than listen…and that can be pretty powerful.


  2. Abby says:

    It all makes sense now. i never really thought about it, but I’ve always said that when I’m approaching the end of my life, I’d like to end it on my own terms. Now I see that it’s really all about having control. I still think that’s what I want, because the idea of just “letting go” terrifies me, even now.


  3. noreen says:

    thanks again, amy, for putting into words what i see every day. “being mortal” by atul gawande expands on this topic on aging that we all deny or fear: losing bits of our physical self and facing dependence.


  4. Richard Swanson says:

    Thank you. As part of a hospice team, I concentrate mostly on “doing for”, but probably do not listen enough.
    Thanks for the reminder.


  5. Very true. We can manage symptoms with medication, but there is no medication to deal with increasing dependence. A very appropriate scripture reference.


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