Four years ago I wrote a post titled “It’s Not My Story to Tell“ in which I discuss when it’s appropriate to tell someone else’s story. Hint: It is rarely okay to tell someone else’s story.
And, yet, I’m about to do exactly that. I am going to tell you E’s story, and I’m going to share my story as her caregiver.
I am now the full time caregiver for my stepmom Evelyn. (I often refer to her in writing as E.) E is 76 years old and physically healthy. She suffers from Dementia due to Alzheimer’s. She is still able to feed herself, is continent, and can dress herself with cuing. She has no short term memory; she can’t remember things from an hour ago. Her long term memory is fading fast. She hasn’t called me by name since she moved in with us six months ago; she has no idea who I am. She often has trouble finding words. She has difficulty finding her room (though all doors are clearly marked), and she has problems following directions. Yet, she is still able to read and write. She enjoys reading and doing word searches. She loves musicals and Downton Abbey. She is beautiful, and she is delightful.
Before sharing, I asked her permission.
In Fall of 2018, before her disease had progressed so far, E and I discussed her disease. I was very open and honest with her. I told her how she got to that place, all of her diagnoses, and what her long term prognosis is. I explained that her disease is progressive and she will continue to lose memory and cognition. I explained that because of this brain disease she may eventually lose the ability to feed herself, toilet herself, and do any kind of self care. I also told her we have no idea how quickly her disease will progress; it could be years before any of those things happen. We would take things one day at a time. She accepted her situation with dignity and grace.
E had read “My Journey through Grief into Grace” and my blog. We’d talked about the messages I’ve received from people telling how much my writing helped them in their grief. I’d shared with her how some people expressed thanks for showing them how to support and love a grieving friend.
I asked her that day in fall 2018 if she would be ok with me writing about her on blog. I asked if could I share her journey with Alzheimer’s.
She said, “If it would help others, I would be ok with you writing about me.”
Up to now I written vaguely about her dementia. I’ve changed names; I’ve referred to her as “Marie” or “my client” in a few posts. I written without details. I have not published every story I have written. But that is changing.
In the future I’ll be writing more of what our days are like and what it is to be a caregiver. I will be sharing stories of things that happened over the past three years. Some of what I will share is not pretty; dementia is a horrible disease. There is nothing pretty about it.
Why now? Why am I opening up about E’s dementia now? Two reasons.
1) I just finished editing “Dementia with Grace, Second Edition.” It is an amazing resource! Editing the book and contributing to it made me realize that my stories may help others. It will be available on Amazon next week.
2) E is fading. Caregiving is getting harder and more complex. The disease, her situation before I stepped in, and the Covid lockdown have taken a toll. I’m facing harder challenges. Things we experience are different than when she was in “moderate dementia.” I feel the need to honestly and transparently share this journey. I can’t share my journey without sharing hers.
As with my writing about grief, my prayer is that my words glorify God, help others, and honor my family.
Some time soon I’ll share the long and ugly story of how we got here. But not today. Today I have a caregiver coming so I can go to physical therapy and run some errands. I’ll share more in the coming days.