And today, it’s out in the world
The most personal essay I’ve ever written is now public
As of today, my story is live in HuffPost Personal. It’s the most difficult thing I’ve ever written, because it’s also the closest to me. The most painful. It’s full of things I found hard to reveal and hard to express.
The story’s title is “Dementia Has Upended My Family And I Don’t Know How Much More I Can Take.”
That wasn’t the title I pitched. But when the editor sent it to me, even though it made me squirm a bit, I knew it was spot on. Because it expresses another feeling that I find hard to confront.
It’s a story about my beloved older sisters, both of whom have dementia. Not the same kinds: my oldest sister was diagnosed first, with Alzheimer’s. Then a few years later, my middle sister began showing mysterious symptoms that affected her both physically and cognitively. She was eventually diagnosed with corticobasal degeneration, a rare, progressive, ultimately fatal neurological disease.
“Write the tale that scares you . . . I dare you.”
So said Michaela Cole, the showrunner for I May Destroy You, in her acceptance speech for the Emmy she won in 2021. And so say numerous other writers.
In this story, I did that. And while I’m proud of the result, it still scares me.
I had so many doubts. Was this even my story to tell? What would my family members think? Was I making too much of my own pain at watching my sisters’ struggles? After all, they’re the ones who are afflicted.
It’s not like I’m their direct caregiver. I’m not spending every moment at either of their bedsides. I live several states away and visit when I can. Have I earned the right to publicly examine what it’s like to witness the slow decline of sisters I grew up hero-worshiping?
But this is the story I have to share
And by “have” I mean it in both senses: ownership and obligation. Any devastating, life-changing disease affects not only the person with the diagnosis. My hope is that other people who have loved ones with dementia may see some of their experience acknowledged and validated in my story.
The sense of helplessness. The frustration. The overwhelm. Sometimes, the dark humor.
Enduringly, amazingly, the love, remaining at the core like an inextinguishable ember when all else has burned away.
I hope my story is taken in the spirit I intended it. I hope it does some good.
I hope you read it. If you do, please comment and let me know what you think.
Dear Jan, Thanks for sharing your story. To the extent that is possible, I understand where you are coming from. My late wife, VJ was began experiencing cognitive symptoms at age 56 and was diagnosed with Frontotemporal Degeneration, probable cortical basal syndrome, in 2013 at the age of 57. I was her primary care partner through most of her 7-year journey with this debilitating illness. She passed away in 2019 at the age of 62 after 3-1/2 months in a skilled nursing facility when I could no longer provide the level of care she needed at home. Like Sal, VJ and I made a serious effort to make the best of a bad situation. We had many challenges, but also many blessings over the course of her illness. We became volunteers with the Association for Frontotemporal Degeneration (AFTD) in 2017 and recorded the “VJ & Chuck” awareness video that summer. I re-married after VJ passed away, but I continue to volunteer as support group facilitator in Rhode Island for both the AFTD and the Alzheimer’s Association to assist families coping with dementia, especially Frontotemporal Degeneration. I do it out of gratitude for the brave families who shared their stories with us and helped to dispel some of the stigma associated with dementia and made our journey a little easier.
Chuck, thank you so much for sharing your story here — it truly helps. I deeply admire the way you have transmuted your experience with your dear VJ to being a support and resource for others who are walking the same rough road. It takes great courage to integrate a loss like that, and to move on from it. Wishing you great happiness.
Chuck, thank you so much for sharing your story here — it truly helps. I deeply admire the way you have transmuted your experience with your dear VJ to being a support and resource for others who are walking the same rough road. It takes great courage to integrate a loss like that, and to move on from it.
Congratulations, Jan, for taking the plunge. It IS your story to tell, in all of its discomfort and confusion and sorrow. Stories are never a solo act. There are always other participants, playing their roles in the narrative, as you play yours. Inevitably, your story is your sisters’ story, your family’s story, your spouse and your children’s story. Sharing it does not invade their lives or experiences, it HONORS them, and you are brave to do so. I greatly appreciate the insights throughout this piece, especially as I navigate the occasionally rough waters of my mother’s gradually deepening dementia. My arms are around you dear friend, holding you with Love, Support and Comfort.
I hope you know how much that means, dear Anni. Love back at you.
I am so very sorry for the crucible of suffering that your family is facing and enduring. My wife began to change in 2007, and for a decade we lived in the darkness of continual misdiagnosis. In May 2019, CBS ran a story about FTD (Frontotemporal Dementia) and I shifted into motion because Amy Johnson’s story (the last family story shared in the episode) sounded so hauntingly familiar. We had to go to an academic hospital, and after twelve years living with an unknown disease, we finally had answers at the University of Utah. My wife of 37 years had finally been diagnosed with bvFTD (another variant of your Sister Sal’s disease). We have kept her in Utah since the diagnosis, owing to the lack of medical knowledge here (Southern Oregon). I am flying tomorrow to hold her hand and say “Goodbye” after nearly 17 years of difficulty, dysfunction, destruction, and ultimately death. Suffice it to say that I understand; and it is so much worse than Alzheimers, which sucks up all the metaphorical narratives and diagnostic expertise surrounding degenerative brain disease. There are a lot of ways to suffer and die; this is one of the worst!!!
Steve, I am honored that you have shared your harrowing experience here. Seventeen years is a brutally long time to go through all that you and your wife have, and I am sure it has taken a toll on everyone whose lives are interwoven with hers and yours. As you point out, corticobasal degeneration/syndrome is very much related to FTD and may in fact be one of its expressions. It’s a merciless disease, and I am so sorry that you’ve had to walk this path for so long. I wish you peace, comfort, and release. Take care of yourself.
This is my second attempt to post; if this is a duplicate, you may remove these comments. My wife has had bvFTD (another version of your sister Sal’s disease) since at least 2007. But we did not know what we were dealing with until 2019. It destroyed so much during our twelve years in darkness. It looked like mental illness, but if this is even possible, it was much worse. Tomorrow I fly to say “Goodbye” for what I expect will be the final time. Seventeen years of the most incredible pain and suffering. I understand all of it, Jan; I really do.
Jan,
So much of your experience resonates with me. My sisters and I are struggling with our mom’s dementia. Though there has been tons of research done, none of it has proven a benefit to our mom. We believe she has had dementia since about 2009, but our dad was in such denial and our mom was so fearful, she was not diagnosed until 2014. They both kept us at arm’s length for many years and underplayed her progress. For those reasons, medications never helped her.
Now dad can’t do it all alone, and wants our help, but not really our input. We see that mom’s quality of life would be exponentially better in memory care, but dad’s guilt prevents her from receiving that care. She made him promise not to ever “put her in a home”, and he’s trying to live by that, even though she doesn’t recognize her own home as “home”.
They rarely leave the house because she’s so adamant about not wanting to shower, dress, put shoes on, etc. She’s at the beginning of end stage, and needs so much more than we can give her collectively.
I find that these are the biggest issues for many with dementia – when to make changes in the level of care, and what is the “best” for a loved one. It breaks my heart to watch what’s happening, but I can only make suggestions.
My sisters and I are all very aware that this may be our future, as well. Our family history is pretty awful with this disease. We all want to make sure it families don’t have the same burden, and are making arrangements in the event we need more care, and to relieve our kids of the guilt out dad experiences.
Thank you for sharing your story. It really helps to not feel so alone in this experience.
Chris — I feel deeply for you and your sisters. It’s so very hard to have to remain on the sidelines and watch when you know there could be, or could have been, more helpful alternatives. And yet, you are correct: your dad is an adult and you can’t step in and remove his agency. This is why I’ve pledged never to make my loved ones promise me things like never putting me in a home — but unlike your mom, I have the benefit of a perspective I’m sure she didn’t have when she asked for your dad’s promise. I hope this is not your or your sisters’ future, but you are wise to put in place some decisions and plans. Really, all of us should. I truly wish you and your family all the best, and thank you so much for sharing. You’re right, it’s a big help to not feel alone.
Thanks for writing this, and for sharing it. I can’t imagine how difficult it must be to watch your sisters’ declines, let alone to write about it. This was brave, and poignant, and a lot of other things I have inadequate words to describe.
Thank you, Allison, for reading and commenting — and for your kind words. Means a lot!
Thank you for sharing your story. Your love for your sisters is really apparent in your essay, it made me feel a lot of empathy for you all. I have two sisters and I don’t know what I would do if that happened. My dad is just starting to show signs of dementia and I fear what’s ahead for him. This disease is just utterly heart breaking.
I appreciate your reading and responding, Julie. I wish all the best for your dad and your family — early evaluation by a neurologist (and a gerontologist) is his best bet. There can be many causes of dementia, not all of which are chronic, and there are some medications that can slow Alzheimer’s if that is indeed what he’s confronting.
This was so good and timely, thank you for writing it and sharing your story. Also in Idaho, navigating the dawning realization of my father’s dementia and failing health. My mother died of Alzheimer’s and I’m feeling like two barrels are pointing at me now. I also want to escape from visits, I was nodding furiously as that and also the therapeutic lying – I just learned last night *his* chronic lying is medical, a cover for his failing memory and confusion. I keep googling and reading things looking for a compass or orientation; caring for a parent I wasn’t close to whose body and mind are disassembling before my eyes is utterly unmooring. I’d blame months-ago COVID for my fog but I know better – that stress is the current culprit. Even as I wonder if the terminal fog will eventually come for me too. Ugh.
Jen, I’m so very sorry — and I wish I had better words to convey that. Please take care of yourself first and above all. Stress can literally be the mind-killer. Wishing you well with all my heart.