Tuesday, May 28, 2013

Dress Rehearsal

Bob has almost fully recovered. He's showering without assistance and walking short distances in the village with his care givers.  In time we're sure he'll regain even more of his strength. 

We almost lost him with this recent bout of pneumonia and it brought up a lot of angst, life and death questions, and uncomfortable dark corners in my psyche. It was an emotionally painful two weeks with sleepless nights, acid stomach aches, and grief, making it difficult to think and function during the day.

These distressing questions needed to be asked and answered and not just by me but also by Bob's daughters. Once he was home and getting better, the panic subsided and I realized I hadn't been ready to let him go. 

He's been an anchor to my life in Bali since we came here together twenty-six years ago to live our dream. We birthed and built our mammoth tusk carving business together. And I've been able to care for him here in a perfect Bob environment.  Alzheimer's and being a care giver have become part of my identity.

I feel in some strange way that my connection to Bob is almost parental and when I imagine him gone, it feels like it did when both my parents died - I felt orphaned.

Then there was the whole question of antibiotics and Bob's Advanced Medical Directive. It's been many years since I'd read this document that he'd made nineteen years ago. It stunned me to see his hand writing stating that if he had a terminal illness and was unable to make decisions for himself and was dependent on others, that no antibiotics or hydration be given, that there be no recitation if he was in critical condition.

In other words, Bob wanted to be allowed to die because he'd seen the devastation wrought on his mother and two of her sisters from Alzheimer's. What he did want was to be kept comfortable and out of pain if possible.

We'd already started him on antibiotics for the pneumonia when I studied Bob's AMD once again. His daughters and I decided to continue that regime.  The gray area with antibiotics is that they give relief and comfort. It was beyond what I could endure to see Bob struggling to breathe, wracked with coughing spells, and hear his chest burbling with every breath.  I didn't have the courage to say no to the doctors. 

It's a huge responsibility be an agent for a person's AMD or to ask someone to be one for you.  While it's the person's wishes you are carrying out, wishes written in a time of lucidity, it still feels unmanageable. Have you ever had to have a pet put down? Multiply that exponentially and that's how it feels to make life and death decisions for a human. The turning point for me was seeing Bob's wishes written by his own hand. That familiar writing went straight to my heart.

Now in retrospect it feels like we had a dress rehearsal for the next time Bob is at death's door. I pray for the courage to follow his wishes that he entrusted me to carry out with the full support of his daughters.

We have prepared the local clinic to offer comfort care and have explained the AMD, giving them a copy for their files. It was a new concept for the Balinese doctors whose culture is present moment oriented. We learned that narcotics here are strictly regulated and can only be given in a hospital by an anesthesiologist.  There is no hospice.

Bob is doing well now, but we need to remain diligent in finding ways to carry out his wishes when the time comes.  We continue to research how comfort care can be given in Bob's home when the time arises. That was his wish, to die at home.

If you have any experiences with AMDs or end of life challenges, I welcome your comments.

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