I’ve told many people along the way that I wasn’t sure which was more challenging: helping with everything with my dad now that he was officially diagnosed with vascular dementia, or trying to figure out how to help my mom manage this. Mom had been minimizing dad’s challenges for years, and regardless of the reason, I understand. It could have been because of the whole not-wanting-to-be-a-burden thing. Maybe it was denial. Perhaps it was fear. It could even have been a subconscious way to channel otherwise unresolved anger that had built up over decades for any number of other reasons – I think my mom followed the expected path that most women of the late 1950s and early 1960s did, burying any barely-formed imaginings of who *she* was, and getting pulled along in the slipstream of gender norms: first wife, then mother, then . . . what? It could have been a combination of all of those things, maybe even more.
My dad was always a pretty open book: a straightforward guy who made it very clear that there was nothing more important to him than to be a good provider for our family. He was an only child. When he was quite young (sometime, in the 1940s I believe – my grandmother always told us he was 8 years old), my grandmother (who was, in just about every conceivable way, the opposite of my mother – a brash, opinionated, dyed-redheaded, 2-pack-a-day smoker), divorced my dad’s father. This was no small deal for a Sicilian-Italian catholic woman of that time, but she had her principles, and my dad’s father had violated them. He, according to her, had pledged his financial allegiance to his own mother ahead of my grandmother and my dad, and that was the end of it.
I’m certain the real story was considerably more nuanced, but that was how she told it, and that was the only story we ever knew. At some point later, she met and married the man my sister and I knew as our grandfather, who was a wonderful, kind, generous, loving person. He was, from all indications, a perfect step-father to my dad, but I don’t think I’m going too far out on a psychological limb to suspect that my dad’s experience with his own father (probably relived mostly in a mental rear-view mirror through his mother and the tellings and re-tellings of the divorce story to friends and family) played a rather significant role in his desire to become the kind of person whose own devotion to his family would right those perceived wrongs. He succeeded magnificently.
Mom is more complicated. She was also an only child. As a kid, based upon the stories told by her younger cousins, she was a consummate tomboy and the leader of their little clan. She fished; she hiked; she climbed trees. She used hollowed-out half-watermelon rinds as makeshift summer “sleds,” rocketing down the huge grassy hill up behind my grandparents’ house, and, if I remember the stories correctly, even down paved streets near the house they lived in before that one. She played softball. She had a cat named Yogi, after Yogi Berra.
When my sister and I were young, mom expressed a lot of creativity. She took art classes; she painted and drew. She made the coolest Halloween costumes. She could sew like a professional. She did needlework. One Christmas, she built scale model dollhouses for my sister and me. As a mother, she had her rules – not too many, really, but to the logic of my kid-mind, they didn’t always add up, so I tested boundaries and got my comeuppance when I got caught, which was often. Other than that, she let us be kids. We were lucky enough to live in places where we could be “free range.” Even into high school and beyond, she basically let us make our own decisions, and make our own mistakes, a quality that I didn’t come to fully appreciate until many years later.
Somewhere along the way with mom though, something shifted. She always had a fiery streak (which was evident during those times of “comeuppance”), but as we got older and more independent (and, to be honest, consumed with our own lives, and more distant) a deeper anger seemed to bloom. Most of the time she was fine, but occasionally I’d be on the receiving end of a passive aggressive sideswipe.
Fast-forward to 2018, once they decided to move, my sister and I (and often my dad) found ourselves navigating a near-constant emotional minefield with mom. My sister and I took on all the logistics of the move, but mom was easily overwhelmed by it all, which would manifest mostly in the form of an angry paranoia – that the movers would steal something; that we were somehow plotting against her if we had a conversation about anything at all when she was out of the room. As the move drew closer, I learned that usually the best response was just a hug, even if her anger and negativity pushed me to my own limits.
As the move neared, I measured their furniture, and measured the new spaces. I ran around in the empty condo with my list of furniture and measurements and a tape measure, figuring where various pieces might fit. I labeled all the furniture back at their house with post-it notes bearing the names of the rooms in which it would be placed, and had my sister video me walking through the condo to describe to mom where I envisioned that the furniture could all go, even putting corresponding stickies on the floor in the empty rooms.
My sister and I had noticed, with all the time we were now spending with mom that the stress of it all seemed to be impacting her: she was having a hard time getting her thoughts into words and we often had to repeat stories or instructions that had more than a few parts because she’d get confused.
I had high hopes that the visit to the geriatric psychiatrist would make it more clear to mom what dad’s new primary care doctor had concluded over the summer after meeting him, administering a “SLUMS” test (St. Louis University Mental Status) and sending him for an MRI: the “symptoms” he was experiencing (shuffling, incontinence, confusion) were a part of his vascular dementia and not something he could control. They recommended a medication, donepezil, that might work to slow the progression of his dementia, and possibly provide some cognitive improvements in the meantime. They were clear, however, that it wouldn’t be a cure – there was no cure – and that over time he would get worse. To help to combat this, they also strongly urged that he start doing more physical activity, and that we look into some local programs that were specifically intended to do that in safe and supervised settings.
Dad was never a very social guy, so my sister and I were doubtful we’d be able to get him to agree to join any program where a bunch of “old people” gathered to play games, but I reached out to them anyway, figuring we needed to at least explore them, and cajoled him into going by telling him that if he hated them, we wouldn’t make him go. After a couple of false starts (no doubt precipitated by his complete lack of interest in doing this), I got them out to both programs. Not surprisingly, mom was far more intrigued than dad was. By the time we got to our second follow up appointment with the geriatric psychiatrist, it was clear that this wouldn’t be a path he was going to follow.
They were mostly settled into the new place, but mom was still given to bouts of anger, blaming dad when he’d have an accident, often berating him with mean outbursts that worried my sister and me. This wasn’t good for either of them. We had to do something. While mom and dad both had talked about eventually bringing someone in to “help,” mom was resistant, insisting that she couldn’t understand how anyone *could* help. What could they possibly do? I suggested that we talk about it at the follow up with the geriatric psychiatrist – I was sure she wasn’t the only one in a similar situation who was feeling overwhelmed by this, and that there were agencies out there who existed for this very reason. Every time I’d witness an incident that would anger or frustrate her, I’d tell her that help was coming – we were going to find the right solution to lighten her load. Slowly, she warmed up to the idea.
At that next geriatric psych appointment, we asked for referrals for some good agencies in the area, and once again, my sister leapt into action, researching all of them, looking up not only client ratings, but employee ratings. She had preliminary conversations with 2 of them that had the best ratings, suggesting that I also speak with them.
By mid-December, I was making an appointment with the agency we’d decided was the best choice, to get their “Community Liaison,” Dave, out to meet with mom & dad. The plan was to explore getting a caretaker for dad, but I knew with one simple question Dave asked when I spoke with him that we’d truly found the right place: at the end of a conversation that had mostly been about dad, he asked, “and how is your mom with all of this?” I told him that while she had evolved to a point of cautious optimism, her jury was still out, and that he could be dealing with someone who at best wasn’t convinced, and at worst, could go completely negative.
As the time for Dave’s visit drew closer, I took every opportunity I could find to offer subtle encouragement around the idea of having a caretaker come in. And when Dave walked into the condo that day, mom welcomed him like an old friend, shocking me when she gave him a hug almost as soon as I took his coat. He was wonderful and thorough, and spent well over an hour talking with my parents, working a long list of questions seamlessly into the flow of their conversation. I was as giddy as I’d been on Easter night the previous spring when mom told me they wanted to buy the condo.
A week or so later, after several follow up conversations, we arranged to introduce my parents to Hannah, the caretaker and companion Dave and his team (and I) had determined would be the best fit for them. I had told my parents everything I knew about her: she’d emigrated here from Ghana about 15 years ago; she was married with 2 sons. She’d lived in North Carolina for about 10 years before moving here about 5 years ago. She loved to cook, and she had been a caretaker for nearly the entire time she’d been in the country. I wasn’t sure what to expect when they met, but from the minute Hannah walked in the door with Dave, my mom was sold. She greeted Hannah with the same warmth she’d shown with Dave on his initial visit. Hannah had a wonderfully sweet disposition; she seemed a bit on the shy and quiet side, but my mom (and by default, my dad) took to her like a fish to water.
The plan was set that Hannah would start during the week of Christmas. Christmas fell on a Tuesday, so we figured we’d have her come that Wednesday, Thursday and Friday for 6 hours each day; she’d then come back the day after New Year’s day for another 3-day week (we were going just with weekdays to start) before launching into full-time, 5-day weeks during the week after that.
We were all excited and enjoyed the holidays, though our plan to have dinner at my house on Christmas Eve with my sister, her husband, step-daughter, and my mom and dad got a bit re-worked when dad was feeling a little off that day. My sister and her family came and ate dinner with us, and after dinner, we packed up plates for mom & dad, along with their present (a new compact stereo for mom to play her CDs). My sister headed back home on Christmas day with my mom and dad opting to lay low and relax at the condo while my family and I drove down to spend the day with my husband’s brother and his family.
I awoke the morning after Christmas, the day Hannah was starting, to my phone ringing at 5:45 a.m. In ways I couldn’t begin to really imagine, things were about to get more than a little crazy.