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The Timer has Started; Reflections from a primary caregiver

Kurt was diagnosed with ALS February 24, 2021. His symptom onset seemed slow at first, but kicked into high gear in the latter part of 2022. He passed on October 21, 2023.


The Timer has Started

By Cristy Hardin

Written on November 18, 2022


The timer has started…


The timer has started to count down in small ways but not in ways I expected to be pronounced. 

  • You are still walking, but with assistance from the cane and walker. The wheelchair will be next.

  • Your voice is strong and weak at the same time. Your speech is clear, but I know you mourn the loss of the clarity you once had.

  • Your mind is sharp, yet, you claim it’s slipping, unfocused.

  • Your spirits are up, but clearly falterning. I see the pain in your face, the pain of the disease, the pain of the loss, the pain of the unexpected that is expected…


A timer has started and I see the hard days coming, I see the need for more help, I see the need for moral and emotional companionship and support. Will you ask for help?


The months are getting harder, but I still leave each visit with a comfort in your mild independence.


Though I know the timer has started…


It’s the little things I see you struggle with -

  • Opening a pill bottle

  • Changing your sheets

  • Getting the mail

  • Leaving the apartment - alone

  • Cooking

  • Using the feeding tube

  • Driving

  • Concentrating


These are the things that worry me.


The timer has started...



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2 comentarios


Invitado
20 feb

Beautify said. I so wish I didn’t understand every word of it.

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Invitado
07 feb

It’s impossible to put such unimaginable indignity into words. The best descriptor I’ve seen was penned by Philip Simmons, a literature professor and religions scholar who died many years ago from ALS. He described it as a loss, teaspoon by teaspoon. His book, “Learning to Fall: Blessings of an Imperfect Life” is true relief, in how it captures death. I watched my father and husband fight ALS. Simmons’ words and humor were the best empathy I ever found during it all.

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