She died in the early hours of Monday morning, surrounded by her girls and her husband of 57 years, in a bed at the wonderful nursing home where she spent the last months of her life, the victim of intractable, unremitting post herpetic neuralgia (nerve pain resulting from shingles) and dementia.
She loved life, yet prayed for its end for almost three years, aquiesing as we tried treatment after treatment, unwilling to accept the futility of our efforts until we had exhausted all possible avenues of therapy that might allow her to live her final days, however long they might be, at least without pain.
How much of her dementia was due to her pain? How much to the medications we tried? A good part to both, I believed, as we saw miraculous awakenings with hydration and cessation of drugs, only to see her return to somnulence, anorexia and confusion when yet another pain med was tried. Even pediatric doses of medications were too much for her fragile mental status, teetering as she was between confusion and remarkable lucidity.
And yet, she maintained her wisdom, kindness and sweet spirit to the end. “How are the kids?” she’d ask me when I called, proceeding to give me the advice I needed to be the kind of mom I wanted to be.
“What am I keeping you from?” she would ask us when we stopped in to visit. “Can I offer you something? The candy is in the drawer there.”
And sweetest of all – “Do you have enough room?” to my daughters as they took turns cuddling next to her in the bed on their last visit with her a week before she died. (We all fought for that spot next to her, even to the end…)
We tried every conventional pain treatment, some more than once, in varying doses and combinations, all without success. Like so many desperate families, my parents also turned to alternative therapy – in this case acupuncture – which failed. A case report in the literature even led us to try botox injections – also with failure and possibly worsening of her pain. After that, unable to push her any farther, we elected to forgo the latest greatest pain med that had just appeared on the market.
For by then, she was barely eating, accepting only tiny spoonfuls of her favorite foods after much coaxing and cajoling, and then not even drinking. And so, on the advice of her doctors, we turned to hospice to give her relief from her pain. Increasing – but still by most measures tiny – doses of morphine, and finally, ativan and atropine graced her exit. And in her last hours on this earth, thanks to these medications, she was finally comfortable and pain free. Thankfully, she was also conscious enough to let us know it, and to enjoy those moments with us, and we with her.
We tried, Mom. We tried so hard.
In retrospect, we probably tried too hard and over too long a period of time. Now I understand that Mom knew what we did not – that she would leave this earth with this pain. We kept her longer than she wanted, but being the mother and the wife that she was, she stayed until we were all ready to let her go.
I do not know what lessons, if any, there are for us in her suffering and death, any more than I know how the God she so loved and to whom she prayed could allow her to suffer so.
The only lessons I can take are those she taught us by her life – to live it fully, with kindness, grace and love for others. In this, I can only think of the beautiful Prayer, written by Mother Theresa and put to music by Rene Clausen, that I could not sing this summer in Cuba without thinking of my Mom, for it embodies everything that she was –
Prayer by Mother Theresa
Help me spread Your fragrance wherever I go.
Flood my soul with Your spirit and love.
Penetrate and possess my whole being so utterly that my life may only be a radiance of Yours.
Shine through me and be so in me that every soul I know will feel Your presence in my soul.
Let them look up and see no longer me but only You.