My sincerest apologies to you Jeff & to your broken apart family.
I am very personally aware that many men (& women, though FTD is the most commonly diagnosed dementia cause in men under 65) who die of FTD (Pick’s disease is its former name) die alone, their families alienated (spouses often divorce & adult children often abandon people due to the bizarre & off-putting behavioral symptoms that often accompany the behavioral variant of FTD aka bvFTD), any money or assets long gone, employment lost, friends fallen away, only scammers stick around to pick many people living with FTD clean.
In a weird way, I was lucky that I was living with my father (not by choice exactly, I had come home to care for my mother who was then recovering from reconstructive surgery from a mastectomy due to breast cancer, unfortunately some months later, she was killed in a freak car accident, so I never left him plus I think my mother & I both knew something was ‘off’ about Dad but of course we had never heard of FTD).
I inherited my father’s care & his undiagnosed weirdness which seemed to be like a worsening psychiatric illness but luckily I noticed that a man fluent in 2 languages was losing his nouns & speaking an elaborate word salad: Dad had the language variant of FTD known as primary progressive aphasia (PPA).
When Dad got to the mid stage progression of FTD, he seemed more like someone with Alzheimers (the hallmark ‘memory loss’ was there) but because Dad also had anosognosia (essentially an unawareness that there was anything wrong with him, it’s also a hallmark symptom of FTD) it literally took years to get Dad in to see a doctor (he was otherwise healthy, he could not see why he would or should go to see his primary care physician) & formally diagnosed with FTD.
FTD still has no FDA approved drugs or other treatments, it’s a chronic progressive & terminal illness. Dad was diagnosed less than a year before he died (the neurologist’s office callously & in violation of HIPPA privacy laws left a message on the answering machine of our home phone on Christmas Eve 2014), just soon enough for me to get Dad accepted to Medicare hospice at home care assistance. We got a good 7 months of helpful care once Dad started falling & couldn’t reliably get himself up in April of 2015 (about a week after his 75th birthday) & he died peacefully in his own bedroom at home in a medical bed provided by hospice on the day before Thanksgiving of 2015.
Anyway my help of other caregivers began years ago along with some earnest limited advocacy for people living with FTD and any & all family/informal/unpaid caregivers of people living with any type of dementia, especially those who are providing care in someone’s home.
I’d say it took about 8 & a half years for Dad’s official diagnosis, but sometime in 2012 I realized it was probably FTD & began using the techniques of occupational therapist & beloved dementia expert Teepa Snow to manage Dad myself (I’m an only child so at least I was spared the agony of a family coming to grips & into unresolved bitter conflict over a relative with FTD).
Teepa says 4 out of 5 families that face dementia don’t go forward harmoniously, not that will ever totally make you feel better Jeff, but you have plenty of people who were alienated by this syndrome.