If Dying Sounds Like Singing


Momma had another seizure this morning following 2 days of inconsolable, raving hallucinations. She’s been under hospice care the past 2 months and, until this event, had been showing signs of improvement as they’ve weaned her off some medications. Dad witnessed the first part of her seizure – a ghoulish shriek warping into a convulsive fit. I ushered him quickly from the bed and out of the bedroom while my husband turned Momma on her side and cleaned the blood and saliva bubbling from her mouth. “But what was that scream for?” Dad wanted to know. He was convulsing himself, defenseless in his tee and disposable undergarment, standing in the middle of the living room. It was 6am and the sun had just started peeking above the neighborhood rooftops. “She’s alright Dad,” I tried to convince him and muttered something about her being startled while I scrambled for the purple folder where the hospice phone number lives. We have had to become storytellers, to live inside dueling fantasies, to create them ourselves as an act of compassion. Dad was wearing that haunted face. It has been etching away at his soft-eyed countenance these past weeks, replacing it with a gaunt and ashy hollow of a man. A man lost inside lostness.

I am losing my father. I am losing my mother too. I am lost. I am inconsolable.

After the nurse leaves I take Dad to her. She is in that postictal deep sleep and I think if he sees her peaceful he will feel peace. “Can I kiss her?” His unsteady voice comes. “Please kiss her. Please kiss her.”

Back and forth between her bedside and his chair… I am dizzy. How do I spread my comfort? How do I do right by them? How will I survive?

Hours later, Dad is at his day program while I stare upon my mother emitting moaning cries and songs. If dying sounds like singing, what does living sound like?

#alzheimersawareness #dementiaawareness #endalz #enddem #iamacaregiver #forbothparents#myheartbreaks #constantly #myfamilymyheart

Crossposted to Instagram

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  • Reply Gretchen Staebler July 7, 2016 at 2:41 pm

    Oh, Elizabeth, this is beautiful and wrenching. I am unable to imagine what the endtimes will look like for my mother, but your haunting storytelling gives me a glimpse of the someday. I am holding you and your mother and father in the circle of my heart.

  • Reply Jessica A. Walsh (@Jessica_A_Walsh) July 7, 2016 at 2:50 pm

    No one’s writing makes me cry the way yours does. How you write such sadness so beautifully, I will never know. I am so sorry for everything you’re going through…

    You are doing right by them every single day.

  • Reply Brian Willinsky July 7, 2016 at 2:52 pm

    Please know I went through this with a mom who was severely brain damaged and had seizures. She had cancer that went to her brain. What you are going through is what I did in the final months. Much of this will not hit you until she is at peace. You do not deserve to wake up every day and suffer like this. Nor does your mother. She deserves to be in a paradise beyond all of our understanding. When my mom left us, I was rejoicing. I had done my time. You have done yours. Your mom has certainly done hers. This may sound harsh and I hope that’s not how you take it. There is no consoling you. I am angry for what you are going through and I don’t even know you nor have I had to live this with both parents. Just one. But my dad was not there, they are divorced. So my sister and I were the caregivers just as you are. Keep her comfortable and as peaceful as you can and know that you did all you could — and WAY more than most people do. Most run away from this.

  • Reply maria :) July 7, 2016 at 3:01 pm

    Elizabeth – your story is both heartbreaking and inspiring and your writing is both poetic and haunting. Your honesty is somehow reassuring and your courage and strength are wholly incredible and seemingly infinite. I love you and your amazing family. Thank you for sharing with us.

  • Reply Helen Boland July 8, 2016 at 9:24 am

    my hand is on my heart as i read your words of love and trial/ it is constant…the realignment of your heart each moment. you are losing and you are gaining a new kind of love and intimacy. ii takes its toll. as i lay here this morning -mourning- hearing your story echo my own. mom—5 years ago, dad- 3 years – my dear husband almost 2 years. fresh tears…and an inner exhaustion. after their passing, the whirlwind of things to do, changes and re-alignment. and now the treadmill has slowed and i lie here in this strange and unfamiliar life…craving touch, caring, purpose. and i tell myself in my aloneness…all the love i have ever received still exists all the love i have ever given still exists.

  • Reply Michael Cummings September 3, 2016 at 9:51 pm

    You’ve probably heard this a thousand times: you’re a Saint. I wish I had a sibling like you. Navigating this alone for the last few months and there is so little info out there. Thank you.

  • Reply Sharon White, SSJ November 9, 2016 at 4:44 pm

    Hello Elizabeth,
    I took care of my dear mom as she spent 15 years with dementia. No one can or should tell you how to act, what to decide what is best for you. People mean well but in the end your freedom comes from making decisions that fit with your heart and soul. I always say that I remember the day that I “got the grace” to love unconditionally with such compassion and tenderness that all fatique and concerns were in the backdrop. It was surreal. I now ask my friends when they are in a similar situation,”Did you get the grace yet?” With eyes wide open many report back that the have been enveloped in a mantle of peace and love that we call grace.
    Perhaps you already know grace, Elizabeth! I can only say, “Namaste.”

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