As my mother is dying, I confront new realities about her sovereignty, about navigating swirling emotions

The past few weeks, my mother’s lung cancer has rapidly advanced its invasion on her body, jolting me into a web of complex emotions that feel unfamiliar to me.

Since May of last year, she has made a valiant effort to be present with the challenges of this cancer. Never has she been without her faculties. Her strength has been most amazing to witness. 

We were, perhaps, lulled into believing that all was well. That this, too, would pass.

But this is not the truth. 

What can be done?

As she becomes weaker, reality sets in. On the phone, she is increasingly unable to connect with us in her familiar manner. It feels like the world we shared with her is unraveling right before us.

I am not the person designated with medical decision-making. I am in New Mexico, she is in Ohio. My concerns center on about how to maintain her quality of life during this critical time.  

When I ask for her needs to be met with hospice, my questions expose weaknesses in a system that no one anticipated would be of concern. As of two years ago, the hospice program there no longer offers in home care, something I had expected. 

This presents the real issue of how to support her with health aides who can assist her in the safe transfer from her bed to other places for her to sit. This now requires other agencies to be involved with a different value system than hospice tradition, including aggressive pain management issues.

I am truly mixed about this new wrinkle. My mother has a new husband, and I find myself caught between the privacy on which she and her husband place high value — and the visceral needs of my dying mom.

Sometimes, I feel impotent. It’s important for me to keep a perspective of “nothing heroic can be done.”

The unknown territory of grief

As a physician used to finding the best way to preserve life and to enhance it, I find these stages towards death to be unknown territory. I lost my sister when she was 18 years old and my father when he was 74, both suddenly. So I am familiar with grief.

How does one navigate these next fews days or weeks so that all the emotions emerging, swirling within are witnessed, honored so not to be buried or denied?

Being present and open to what is bubbling up for me has helped me on this journey. Crying when the feelings come up has been most beneficial. Accepting or asking for hugs have helped as well. Being honest about my feelings with those at work has also assisted in dealing with the waves of grief. I have cried in front of the treatment team at Villa Santa Maria, of which I am part. Being humbly human…

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