This time last year, my dad’s mental faculty was declining but he was still living a fairly “normal” life. Now 74, until the past year or so he’s been pretty active and seemed younger than his chronological age. With his dementia onset on our minds, my siblings and I made it a priority for us to celebrate together (the four of us live in three different cities, two different states). I distinctly remember my brother saying “This might be the last Father’s Day Daddy is around to celebrate.”
In a manner of speaking, he was right. My father was “officially” diagnosed with Alzheimer’s at the end of last summer, but we’ve known for years he was…changing. I worked at a continuing care retirement community until my first child was born (and continued in a minor consulting role until we moved), so I thought I knew something about aging and dementia. It’s a whole ‘nother ballgame when it’s YOUR parent, and you discover how easy it is to downplay or excuse otherwise obvious symptoms, or simply dismiss them altogether.
Misplacing keys (haven’t we all done that?)…opening a Coke and then forgetting where you left it…not finding the “right” words to complete a thought. Those are the easy things to overlook. Many things I just didn’t know about; his wife of 15 years is an accommodating caregiver, and I think together they found a way to keep going without acknowledging any real “problem”, at a minimum, its progression. Now, looking back, I can see how he was trying to control what he could and get “his affairs in order”. He was ending friendships he had for years; trying to conclude some family business; easily frustrated and confused and “new information” was difficult to process; he actually had portraits made and I can’t remember the last time he had his picture taken. There was also a darker side…paranoia, irrational behavior, imagining things that weren’t taking place. Since I only get to see him a few times a year because of the distance between us, I didn’t see those things.
At the end of November, his life changed, and consequently, so did everyone’s in our family. He had three strange “episodes”, two of which led him to the ER. Ultimately, we made the decision he needed serious medical evaluation and intervention, so following a family meeting, we insisted he be admitted to a facility specializing in geriatric care. Sparing the intimate details, many of which we’ll never know ourselves, it appears Daddy was misdiagnosed with Alzheimer’s, and instead has Lewy Body Disease (Here’s a great link which explains the differences between AD and LBD, but you have to scroll down a bit). It STILL blows my mind I had NEVER heard of Lewy Body’s disease and it’s the second most common form of dementia behind Alzheimer’s, accounting for about 20% of all patients. What’s even MORE mind-blowing is the MAJORITY of people working in the hospital–EMORY!–had not heard of it (docs, yes, support personnel, no)! NONE of his doctors ever mentioned Lewy Body’s…until we began questioning it, sadly, after the fact.
The problem is LBD patients can react severely to meds typically prescribed to other patients…this is what happened with my dad, as far as we can tell. He had a reaction to… something…and has never recovered. He now requires 24-hour care and can do little for himself. Overnight, everything changed. Initially we did not think he would make it out of the hospital; then he was given six months to live and placed under Hospice care; now, he’s no longer considered a Hospice patient, and he could “live” like this indefinitely (thankfully he’s still able to be at home).
Wow, it’s hard to write about this and leave out so many details. We’ve gained an experiential education during this process and our family has had to find a way to agree on his “best interests”. Difficult when you’re dealing with four siblings and his wife (our mom lost a battle with cancer when we were young), but for the most part, we’re on the same page (although some of the pages are fraying).
So…Father’s Day…I’ve been rather pensive and thankful I could look at it through my CHILDREN’S eyes as they looked at their father. Rachel AND THE BOYS (!) stamped a card for Tad, and they all wrote in it. I’m a words of affirmation girl, so as far as I’m concerned, their card WAS the best part of the day. Even if they had not signed what they wrote or their handwriting been recognizable, their personalities sprang to life through their penned sentiments.
So, I’ve spent the past week contemplating my childhood and the influence my father had in my life–and I guess continues to have–and I saw some things for the first time EVER. But THAT will have to wait for another day. When I get tired of writing, I KNOW you’re way past tired of reading :).