My mom was in a major car accident...
The event that shifted the momentum of our Alzheimer's Disease journey.
WELCOME TO MY SUBSTACK NEWSLETTER!
This has been a long time coming and I’m so excited to launch my Substack newsletter and community, When Career & Caregiving Collide by Jessica C. Guthrie. This will be a subscriber community where I will share candidly & vulnerably about our Alzheimer’s Disease journey, how to advocate for your loved one, and how to support yourself & the people in your life that may be caregivers.
1. Why this, why now?
I wanted to create the space that I needed for myself 10 years ago when I became the full-time caregiver of my mom, Constance (y’all know her as CG). I wanted a space where:
someone was being real and honest about Alzheimer’s disease and forms of dementia
someone shared their actual reflections, lessons learned and practical advice without sugar coating that I could take or tuck away as needed
someone shared questions and insights so that I could know what to look for and what to ask as I navigated my own journey
we talked about and centered the millennial caregiver that is an only child and solo caregiver that was also balancing the early parts of their professional career
we acknowledged that caregivers are the linchpin of our communities and unless we truly care for them, equip and empower them…we won’t thrive.
So, I created the space that I needed and wanted and I deeply believe it will be helpful, insightful and illuminating for all of you! My hope is that by authentically sharing my story in MY own way, you feel seen, affirmed and connected.
If you’re a current caregiver, welcome. A former caregiver, welcome. A soon to be caregiver, welcome! Someone who loves a caregiver and wants to show up well for them, welcome! Thank you for being here and supporting my ongoing journey as a caregiver, advocate and educator.
2. What does this Substack community entail?
Here’s how things will work—
Every month I will publish (and send directly to your email) a free newsletter that will include my general caregiving reflections of the moment, updates on CG (my mom) and our current state, along with any free resources/useful things to share.
For those of you that become ‘paid subscribers’ you will receive weekly newsletters (emails) from me that will include three sections: a chronicle of our Alzheimer’s Disease journey from the beginning with an “I remember when…” reflection; A current moment reflection/lesson learned; and specific tips for you to take away to apply to your own experience (resources, templates, recipes, questions to ask). You will also have the ability to chat, suggest topics and ask questions for me to answer and be in community with other paid subscribers.
For those that are ‘founding members’ you will receive all the above plus the opportunity for monthly LIVE experiences with Jessica. These are currently scoped to be once a month “Office Hours” with Jessica via zoom where you can bring your questions and topics for us to talk through and be in community live.
3. Wait, your mom was in a car accident?
July 26, 2014.
I was home in Virginia visiting from Texas. While I was busy getting some work done my mom was going to church for a Saturday church meeting. My mom was active in our local church and drove this route multiple times a week with ease. My mom has been driving these roads for well over 20 years at this point…I wasn’t concerned about her “just going to church.”
The phone rings…it’s a local number but I don’t know who it is. “Jessica, your mom has been in an accident down by church, get here now.”
We live in country suburbia filled with winding back roads, woods and few streetlights. It’s peaceful but everyone kinda knows everybody and a little bit of everything. While I was driving all I could think to myself, “did my mom cause this accident?” “Is she okay?” and “please don’t talk to anyone…” My mind went straight to I don’t want anybody to know what I’ve been holding onto on my own…our little family secret.
When I arrived I saw my mom sitting in the ambulance and a few church members standing on the side of the road. Apparently, my mom pulled out to make a left turn and the brown car t-boned her. Till this day I’m not fully sure whose fault it was because the other driver said she wasn’t paying attention, but I also knew my mom…. did she look both ways? Did she get scared and stop mid turn? Was this her fault? The police officer was kind and everything was settled at the scene but my mom was taken to the local emergency room (for confusion…) but everything checked out okay and she was sent home within a few hours.
Most people saw an accident on a back country road. I saw one of my greatest fears unfold in front me. Something was happening to my mom…and it was way bigger than I initially thought. You see, my mom had been experiencing some cognitive challenges, but she was still operating “fine.” Yes she would repeat herself, or ask the same question or even forget where she put common items…but she was still so coherent, so clear, always able to say “I was just testing you, I’m fine.” I had witnessed enough of that to know something was “off” so I had already planned a doctors visit for her while I was in town.
This car accident just accelerated my worries. I didn’t know what to call it at the time so I just kept saying I think she has something neurological happening and I am concerned.
Stick around and subscribe to my Substack as I share more of our story—the early symptoms, the initial doctor visits and diagnosis + the early years and navigating as a long-distance caregiver and more!
My mom was admitted into Home Hospice (again) exactly 10 years to the date of this car accident that changed our lives.
Her car accident was July 26, 2014.
My mom’s first hospice nurse visit was July 26, 2024. WOW!
I deeply believe that everything is connected and part of our story but this date connection is WILD! If you know a little bit of our story you know that this is my mother’s second time around on home hospice…but this time I can honestly say will be the last time (there is no ‘graduating off’ in sight). My mom’s disease has significantly progressed—- she has lost significant amount of weight (even while still eating), she has lost significant muscle…she is very boney (is that word?). Water literally pools in her clavicles, her hands and arms are starting to contract, she’s sleeping more, and she’s been keeping recurring infections at bay. This is all in addition to her being a 7D on the FAST Scale, fully incontinent, no longer ambulatory, fully bedbound, majority non-verbal, on a fully soft (almost pureed) food diet, and requiring of max assist for everything. CG is 75 years old. She has been living with diagnosed Alzheimer’s Disease for 10 years. We are getting close to the end of this journey…I am clear-eyed about that.
All of that being said, it was time for home hospice again. Time for weekly nurse visits and support so that I am not here in the wild wild west wondering what might be happening to my mom. I’ll be sharing more about how I navigate hospice and all the insights to help dispel some myths and misunderstandings so many of us have about this great benefit for our family members. Again, subscribe to follow along!
4. Other places you can listen & learn from me
I’ve had the pleasure of talking to some great people over the first half of 2024 so I want to share a few of my favorite conversations with you for free opportunities to continue to engage with our story.
Uncared For with SuChin Pak was one of my most favorite conversations as SuChin is starting the journey of caring for a parent living with dementia. Also… all of my pre-teen dreams came true talking to this former MTV news correspondent (you remember TRL days?!)
Listen to my conversation with Palliative Care Chaplain, Cody Hufstedler, on season one of his Dying to Tell You podcast. I’ve never been interviewed by someone who is such an intentional listener & connector and truly holds space for the humanity of our experience. So good!
My conversation with sister duo Natalie and JJ of Confessions of a Reluctant Caregiver covered so much, but really touched on how I made the decision to move back home to care for my mom, my time with her during the pandemic and a little of my social life. They are so fun to chat with!
You can also engage with my content and expert advice around supporting a loved one living with dementia at ROON Dementia. I love this resource because it brings together experts in the field of dementia to answer your questions and elevate high quality insight and information without the doom scrolling of google.
5. Thank you in advance!
I am so grateful and I recognize the privilege for my mom to still be here with me and thriving in her current stage. I also hold deeply the responsibility and privilege of bringing others into our story all the while honoring and respecting my mother. CG always said, “yeah girl you can share!” So, here we go CG!
Your support of this Substack newsletter and community will allow me to continue to care of my mother at home, to be as present and proximate as possible, and to build a business that illuminates the power of the family caregiver. Thank you!