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.
My condolences to you and your family .
Oh, Peg, thank you for this. Your writing is so eloquent. And the music…! So beautiful … and the sound of birds …. it’s as though Mom is right there…
So very sorry for your loss. She sounds like an amazing woman
Peggy,
I’m so sorry to hear of your loss. What you wrote is lovely.
– Elaine
I’m sorry for your loss, Peggy. My thoughts are with you and your family.
So much of you in that beautiful face. And of that beautiful face in you….Your writing is the best kind of blessing, it opens out your experience and we are all less alone for it, as we join you in tears and gratitude for your mother’s life.
Sending good thoughts for you and your family at this sad time. It is hard to understand why the end of life is so easy for some people and more difficult for others isn’t it?
Oh Dr. P, I’m so sorry for your loss… thank you for sharing it so eloquently
Thank you Peg, you captured the essence of Mom in your words…I think the best parts of us are a gift from her! XOXO, Ro
Beautiful writing on your mother. My condolences.
Karen in NC
My condolences to you and your family, and thank you painting such a eloquent picture. It brought back my memories of my parents, my happiest thoughts.
Dear Peggy
I’m so sorry for your loss.
I hope she will rest quietly.
Peggy — I am so sad to learn of our mother’s death. I know how hard you tried to make things better for her. We never truly know, at the time, if our efforts are the right ones, but I believe that as long as they come from our heart and a loving place, we can be content with the decisions. Let’s get together on the 20th — Annette
Lost my own mom 3 years ago after her long struggle with dementia. My thoughts and prayers are with you.
Dr. P., I’m just so very sorry for your mother’s passing. What you wrote is heartbreakingly beautiful. I’m wishing you peace and comfort.
Bless you as you lay your mom to rest. A well-deserved rest . . . may you find comfort in the courage she demonstrated for so long.
What a lovely tribute. The poem was very moving. My condolences on the loss of your mother.
I am so sorry for your loss. Your words of love about your mother are, I’m sure, putting a smile on her angelic face as she watches over you in your recovery.
Sending some good energy to you…
Peggy,
She lives on through you and your brothers and sisters. She dances and sings in your hearts forever. She watches over you now as always since before you were born. Much Love,
Lauri
My deepest condolences. From what I know of her daughters, your mother lives on in all of you – you certainly share her caring and love.
With affection,
Alice (whom you visited at MSK in June)
May your mother rest in peace. What a lovely post.
To all my friends and colleagues and readers and family who have written so many wonderful comments here and on facebook – Thank you all so much. It means so much to me and my family. If I have learned yet another lesson form my dear mother’s passing, it is that opening up your heart brings in so much love. Thank you all form the bottom of my heart.
Peggy
Peggy,
Thanks for writing so sweetly about mom! She would love the poem, too.
Oh, oh… I hold you in my heart…
You helped all of us who have lost an elderly parent after an extended illness. We suffer a peculiar and bittersweet pain. Thank you.
Your mom’s service was POSITIVELY moving. As much as I boo-hoo’d, I came away with the warmest feeling and a changed outlook. Even in death, your mom has a positive impact. Wouldn’t it be nice if she were considered for sainthood? Saint Patsy? Seems fitting. 😉
Sorry to hear about the loss of your mother. It’s not an easy thing to go through.
When I read about how you felt you had tried too hard, I could definitely relate. I lost my mom this past August. And she too was barely eating towards the end. It took her an hour to eat two bites of fruit. When we left, my dad said we should have tried to keep feeding her. I said I understand dad, but it was wearing her out. I believe my mom also knew it was time to go.
It sounds like your mom was a lovely person. I think sometimes the best way to get past the grief is to think about the positive influence they had in your life and to talk about that. To celebrate that you were blessed to know such a wonderful person.
I am so very sorry for your loss Dr Peggy (TBTAM). What a beautiful tribute to your Mom with this post, poem and music. It would be nice to hand write this post in a special journal to be passed down through the generations. I don’t pretend to know why some people suffer and some do not at the end. Imperfect world and we can’t understand some things on this side of things. But ..going with her faith …she is restored ..no longer suffering ..filled with life and reconnecting with loved ones already passed on… and so much more ..all good.
I knew from the phone call from the nursing home Mom would be dying that night. I knew it when I saw her in the ED. And ..I knew it would end the suffering she endured with dementia and steady decline in health the last 6 months of her life. And yet at her side, clinging to her I told her to hold on to fight it …that she could. I wish I had instead told her it was okay for her to let go, we were all there for her …to let go and go to God and her loved ones. I guess sometimes all we can do is our best ..even if it’s not *the* best at the time.
Hind sight is 20-20. But …being a physician, if you hadn’t tried those things ..you may have wondered “what if?”
Forgive me for going on. Your post is moving… and truly a beautiful tribute to your Mom.
Beautifully written. The spot next to her in bed must have been a cozy one. So sad is dementia; that she had such pain to is unfathomable. As I watched my mom go through the ravages of dementia and hoped for it to end, when it did it just changed the sadness from one kind to another. As you have so beautifully expressed.
Peggy, Connie and I are so sorry about the loss of yuor mom. We know what it is like, and the memories will sustain you through the holidays and more. Take joy in your daughters, and look for your mom in them.
oh, peggy. i am seeing this late, but what a good woman she was, what love you and the family have for her. and i’m glad you have written some about the hard parts — because so many times they sneak up on families, and we all feel alone in that place. xoxo
Peggy-
I do not know what lessons, if any, there are for us in her suffering and death…
The lessons will come in time as you remember small gifts she gave to you in the years ahead.
So sorry to hear of your loss. God bless.
Peggy, I was so sorry to hear about the loss of your mom. I read your beautiful tribute to her and her life. I have no doubt the pride she must have had for you and your family.
You are in our thoughts at this difficult time.
Sincerely and with deepest condolences,
Gina & Joanne
Peggy, your beautiful tribute to your Mother was from the heart. I can see how much it meant for you to lose her. But I think you can take comfort in all the things you did for her, not only in her last days, but all through your life. I think she knew how much she was loved by all her kids and I don’t think you should have any regrets for what you coulda, shoulda done. You did it all. The loss is easier when you know that. Love.