March 16, 2024
Dear readers… You’re probably here because your home has also been visited by this sneaky thief of a disease. I see you and I commiserate with what you’re going through. I understand the anxiety and grief. Or maybe you’re here for some other reason after having had your life touched by dementia of one form or another. In either situation I hope my we can help you.
I’m Heather’s husband John and I look forward to sharing my thoughts and experiences both for personal therapy and also in case it might help those of you who are following the same path. Please join us in this journey and please share your comments or reach out to me.
The reason we were able to put this site together is that I started keeping notes when I first started to fear that something was wrong with my hunny, so it’s all available now almost three years later to refresh my memory. I had the feeling it would be important, it was clear something serious was going on.
Heather was always so very much on top of everything, from caring for our adult children through the most tender and skilled parenting, to keeping lists for the everyday things and even our five-ten-twenty year goals. She knew where everything was and had systems in place to make life easy and lived with great joy and satisfaction. There was no life challenge that she didn’t face with a positive outlook and a plan to deal with whatever we faced. In addition to my notes I have a big collection of photos and videos that I’ll pull from and share here to illustrate things. Sharing has always helped me, and maybe it will help you too.
Heather and John standing in front the ocean
Scot’s Bay, Nova Scotia -Spring 2021 before this all started
March 20, 2024
Navigating this journey has become increasingly challenging, as Heather’s perception of the world undergoes frequent shifts. Despite facing numerous tough times, evenings when I prepare her for bed stand out as particularly difficult, often filled with confusion, tears, and resistance.
My current objectives resemble those of palliative care; while I can’t fix everything, I strive to ensure she remains well-fed with plenty of treats and her favorite foods, clean, comfortable, and most importantly, I aim to bring joy into her life by making her laugh. I’ll often tell my digital device “Hey Google play some happy dance music” and I’ll take her hand in the kitchen and get her moving.
Heather has always approached life pragmatically; in tough times, she would often ask, “did anyone die?” before seeking out the most practical and positive way forward.
A recent visit to the drive-through at Dairy Queen for a chocolate-dipped cone exemplified moments of happiness and joy amidst the challenges.
Heather with an expression of joy
Heather loves treats!
Background (posted March 17, 2024)
Before June 2021, Heather was her usual happy, loving, organized and capable self. Like any other couple, even in retirement, we led busy lives. Before retirement Heather enjoyed a full and rewarding career as a Respiratory Therapist at the local children’s hospital,
Heather in her air ambulance uniform c. 2000
Heather in her air ambulance uniform c. 2000
Retiring early at 56 was a privilege, affording us time for hobbies and fulfilling days still parenting our adult children to some degree, enjoying our little cottage, camping trips in a teardrop trailer, cycling, swimming at the YMCA, and on and on.
I always considered the house Heather’s domain, while the garage was mine. Whenever she gestured for a new shelf or requested furniture rearrangement, I eagerly complied and I sure loved my role as my sweetie’s #1 support staff. Our home remained clean and organized, with shelves of knickknacks and cabinets filled with items beyond my comprehension (more on that later).
However, in June, things began to change. Keys vanished from her purse or were misplaced in plain sight, like on the car hood during a park walk with the dog. Individually, these incidents weren’t alarming, but her inability to handle them independently and her emotionally upset response troubled me. Additionally, Heather lost interest in managing household finances after 45 years. Alongside memory lapses, her personality underwent subtle shifts—nothing negative, but for example her apathetic reaction to her mother’s passing a few months later raised a red flag – I recognized this as a personality change.
Another lingering concern revolved around Heather’s minor facelift in June 2021, coinciding with the onset of these changes. I’ve pondered whether this procedure accelerated existing dementia. Although I raised this with her doctor and the Gerontologist who conducted her assessment and diagnosis, they assured me that a CT scan in October 2021 revealed significant brain atrophy predating any recent injury. Despite this reassurance, the thought still lingers, but I try to put it aside. Looking back doesn’t help us today.
As these deficits accumulated, I kept my growing apprehension to myself until our daughter’s wedding, when she remarked, “Is mom okay? Has she given up or something?” Her observation marked the beginning of my candid discussions about my concerns regarding dementia.
That paints a brief picture of the very first signs of an issue, and explains how ordinary and smooth our life was. In my next entry I’ll list the deficits and challenges we have today, to show how far things have gone in under three years. My goal is to bring this blog up to the current time so that I can update you as things progress in the coming months and years.
It all seems so very compressed and rapid, which is common with FTD presentations, especially in younger people.
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