In the uncharted territory of dementia caregiving, filmmaker, and creator Kitty Norton, has embarked on a personal quest through her blog, Stumped Town Dementia. Little did she anticipate that her introspective musings on the challenges and joys of caring for her mother, Gloria, would evolve into a powerful beacon for a community of caregivers supporting family members experiencing dementia. In recognition of National Family Caregiver Month, Kitty shares the unexpected journey from solitary reflections to a shared experience, weaving laughter, and sorrow into a tapestry of understanding and support for those navigating the complexities of caring for a loved one with dementia.
The NAB extends its appreciation to Kitty Norton, caregiver, Blog writer, and Producer of “Wine, Women and Dementia” for sharing her thoughts with us during National Family Caregiver Awareness Month:
I did not set out to raise awareness or form a community. Nor did I intend to become a resource for other family caregivers of people experiencing dementia. Yet, as I poured my experiences onto a digital canvas, an unexpected community emerged. In sharing the raw truths of this journey, we found common ground – a lifeline woven from shared struggles, laughter, and the poignant reality of caring for those with dementia.
When I started the dementia family caregiver blog, Stumped Town Dementia, I did it for me. I did it to process my thoughts and feelings about this swinging dementia lifestyle. To stop short and take measure of my caregiving prowess – or implosions – depending on how the day had gone. I did it to have a creative process that was all my own, outside of caregiving, and yet still awash in dementia.
At first, I succeeded in raising my awareness. Typing away on my computer forced me to examine our adventures in dementia. In the retellings, I could see where I needed VAST improvement. And I could selfishly linger on actions that were fruitful in bringing my mother, Gloria, a smile, a giggle, a reprieve from dementia’s grip for a day, an hour, or a few seconds.
I shared the blog with family and friends, hoping this would stem the tide of individual emails needing to be answered weekly – “How’s my sister doing?” “Is Gloria, okay?” “You hanging in there?” Some of them read the updates, but most of them did not.
So, I was bewildered and thrilled with the first comment on one of my posts that wasn’t from a friend or family member! While I wrote for myself it was gratifying to have an audience. I kept going.
And that’s how it started. That’s how I realized the importance of sharing our journey in caring for family members with dementia. Other households were feeling the same isolation, guilt, happiness, and hilarity that we were included in the dementia journey. They too were scraping together a life for their loved one experiencing dementia, and themselves, out of an ash heap of loss. I wanted to help them. I wanted them to help me. I wanted to find an anchor in the dementia drift, somewhere and someone to cling to as my life was radically changing. In their comments and communications, I found my lifelines.
We built a community, they and I, out of a shared appreciation for the brutal truth of the toll this journey takes on all involved, for our devotion to our person living with dementia (even when we wanted to bop ‘em over the head with a frying pan during heated hygiene battles), and our mutual go-to coping mechanism of humor in the bleakest of situations.
We bonded. We learned from each other. We became aware that there were legions of us out there, all feeling hopeless in the face of a lengthy terminal illness, feeling guilty in thinking we weren’t doing enough, or wishing our person with dementia would go quietly in their sleep each night. We weren’t monsters and we weren’t saints; we were humans, slogging our way through the toughest part of human life – the ending.
My beautiful mother, rascal ’til the end, died March 8, 2021. I had never considered devastation and elation as two sides of the same coin, but they were both waiting for me after Mom took her last labored breath.
And yet, I wasn’t done with dementia. I did not want the next generation of caregivers to have to start at square one like we did – like so many before us did.
What I did want was the caregiver half of the equation to be seen, heard, and celebrated, both for those of us who had already completed the journey, and those just getting their sea legs. I wanted to see our powerful stories, anchored in laughter and sorrow, brought to the surface, bursting forth with LIFE that will not be denied, even on the road to death.
For that, I needed a community of like-minded advocates. Turns out, they were already with me.
Now, you may not decide to buy a beat-up, old RV, roam around the U.S. meeting virtual friends you’ve only known through online support, film yourselves talking caregiver smack over a bottle of wine late into the evening, and eventually birth a family caregiver documentary out into the world from the entire escapade like I did (then again, you might!), but whatever form you choose to raise dementia awareness is just as important.
Trade your stories. Live out loud. Celebrate yourselves.
Caregivers are not statistics in a policy paper. We are the facts and reality of this journey. When we live out loud regarding our challenges, our successes, and our failures, it gives the support community, medical professionals, and policymakers a clear picture of the desperate need for resources for ourselves and our folks living with dementia.
I encourage you to take to social media and share your life in dementia! Connect with others who are raising awareness through their own journeys. Or hit up an in-person or online support group, connect with those who are up the same creek without a paddle as you are, and find your people.
Because you never know…
…when you are ready to live out loud, whether you set out to or not, you will become somebody else’s lifeline. And that, my caregiver mateys, is a mighty good thing to celebrate.
As we traverse the labyrinth of caregiving for people living with dementia, let us not walk alone. Join the conversation and be part of a community that understands and seeks to raise dementia awareness. Here are a few ways you can get involved and find support:
- Connect with Stumped Town Dementia: Dive into the blog at StumpedTownDementia.com to share your experiences, glean insights, and build connections with fellow caregivers.
- Explore Dementia Advocacy or Caregiver Support Groups: Join established advocacy groups like the Alzheimer’s Association, Dementia Action Alliance, Family Caregiver Alliance, or Caregiver Action Network to access resources, support networks, and stay informed about advancements in dementia research.
- Attend Caregiver Support Workshops: Participate in local or online caregiver support workshops to enhance your caregiving skills and connect with professionals who can provide guidance.
- Share Your Story: Your journey is a powerful tool for change. Consider sharing your experiences with dementia caregiving to raise awareness and reduce the stigma surrounding this challenging path.
- Spread Awareness on social media: Use your online presence to spread awareness. Use relevant hashtags to share informative articles, resources, and personal insights on platforms like Twitter, Facebook, or Instagram.
Remember, your voice matters, and together we can create a ripple effect of understanding and support. Let’s navigate the dementia drift with shared strength and compassion.