I should probably apologize for not posting a follow up to the health adventure we went on with my mother starting in August 2020 (though really, starting much earlier). This year, 2021, is flying by for many reasons – but perhaps my favorite, is that I do not spend my days obsessing over what is happening to her. That obsessing started well before August 2020 – though I’m still not sure I can pinpoint the ‘when’ of the marked differences in her behavior or voice or stability starting pinging around my brain. That obsessing went into high gear when she was eventually hospitalized at the beginning of a family vacation – a time when the rest of the family had a lot of conversations that we really didn’t want to have. Conversations that started with I don’t think she’s going to come home again and ended with I’m not ready for this, how are we here already? In my last edition, Mom was just realized from a rehab facility – a thought that left me in a panic as it coincided with a vacation that everyone insisted I still take. What I really wanted was to be at my parents’ home to ensure that all went well – but really to be able to pump the brakes if they didn’t.
I was not needed. The transition was quite seamless.
Still, I did cringe each time a phone call from my father included a list of hours they’d cut for the home health aides. It turns out, they were not needed either – often spending their time making small talk or lending offers to wash mirrors or vacuum. Okay, well, I for sure would not get rid of someone who was offering to do housework…but, in retrospect, I can understand why it was important to for my parents to ride solo. Retrospect because while my mom has made a literal miraculous comeback – I have continued studying and reading and gathering as much information as I can with regards to the aging and what our (the children) role is in that process. Retrospect because (another thing that makes me cringe) I never took to the time to understand how various benchmarks in a senior’s life would make them feel. But then, why would I? At (almost) fifty, I am still firmly planted in the pot of what do we need to make this better how can we make this easier what is the safest plan please just let me just take control of everything. I am surrounded by women my age (and men, yes – but this is a safe space where we can just admit that the caretaking most often falls to the women, right?)…what was I saying?
Right, I am surrounded by women operating what is often called the bridge between generations. On one side, we have children at home to care for and, on the other, we have parents whom we also feel pulled to care for as they arrive at their twilight years. It creates an emotional need to be in two places at once, feet dipped into both pools. Of course, that is impossible, which makes it even more stressful, throwing us into a high speed mode of operations in trying to resolve all things in all places for all people. Because life doesn’t seem to care about what we have on our plates, crises come in batches – waving a flag that reads something like I bet you wish you were prepared for this. They don’t arrive when we have nothing going on – they arrive when we have everything going on, generally just after we think oh, I cannot handle one more thing.
Kid crises? At this point in my life, no big deal. Seems that once you get your eldest all the way to adulthood, it feels like such a personal success story that the rest of the kids receive cruise control care. Seniors crises? Well, that’s a new one for most of us. And, for most bridge-operating adults, the correct questions and the plans and the opinions are not collected prior to the crisis. The first job in an “event” is to realize you don’t know as much as which you you did.
We thought, my brother and I, that we’d already had the difficult conversations with our parents – the ones where we asked them if they’d made plans for their finals stops in life. We thought we’d nailed it as we got notes in the months following about who we should call when one of them passes. I remember my mom’s good news (?) that the funeral home would collect their bodies from wherever they dropped. Well, yeah, that’s good (?), I thought. The thing is, when my mom went on her vacation last year – that’s when we learned about all the other questions and conversations that we hadn’t had. Had they any pre-determined benchmarks that would tell us when it was time to look for new living arrangements? If it came down to a need to move them closer to one child or the other, which direction would they want to go? North or South? What kind of arrangements or planning should we have done if that were the case? Who were their primary doctors? And the others? Were the kids on any of the HIPPA sheets? Who else was on the POA? Did they have ending of life plans? How would we know what the right steps to take were? We thought, my brother and I, that we’d had the difficult conversations with our parents. Yet, as I write, I still cannot tell you most of the answers to those questions.
For instance, I’ve already forgotten what step one is. Is it to write a blog about the things you don’t know? Maybe it’s an ongoing conversation or a consistently updated shared file or a fortune teller or a spreadsheet or a Post It Note or a folder labeled Open In Case Of Parent Emergency. I do think my parents know the answers to most of these questions with regards to each other. But that’s a pretty important thing to just think. It’s also an easy thing to completely forget when in the middle of the swamp with questions coming at you fast and furious. And, of course, what if we find ourselves in a situation where both parents go down at the same time? Would it not be easier just to pull out a memory book of well, this sucks, but here’s exactly how they want this to play out.
I cringe because, for years, my initial response to any signs of parental aging has been a near demand that they start looking for a home closer to myself or my brother – with a push to assisted living. I never thought about what I was really asking of them when I proposed that. It was not just about moving for my convenience – it was asking the to relinquish their independence. It was asking them to give up their autonomy and sign up for an adult babysitter. It was asking them to remove all the things from their lives that give them reason to enjoy their lives. It was asking them to face a move that could quite possibly be their last – asking them not where they want to start their next phase, but where they want to be when all phases end. To seniors, that question of where do you want to live next? really translates to where do you want to die? Well, shit. I don’t want to decide that either.
I thought, for so long, that assisted living made sense. Heck yeah – move into a pseudo-apartment where someone else cooks your meals, with onsite hair care, movie nights, and a nurse on every corner! And maybe that is what assisted living looked like at its inception – but now, the affordable options are much closer to a nursing home – facilities jammed and understaffed with a focus on keeping everyone comfortable and quiet by peeling away anything that could potentially be deemed too dangerous for an elder, all the way down to brewing their own coffee or taking themselves to the toilet. It is so American, really, that we would pack up our parents and put them into a dormitory dedicated to the aging quietly so that we can carry on with a false sense of doing the right thing.
I cringe at my insistence on seeing this doctor or that doctor, pushing for test after test – prepared to take all measures to extend my mother’s life until what? Until I was ready? Is that what she would have wanted? More tests, more pills, more aide? Yes, we were lucky – it did not come to that point where we really started to buckle down and decide what type of life was acceptable to fight for. But it easily could have and I probably would have. I would have kept going until forced to throw in the towel – perhaps, in the process, only dragging out the inevitable to a point that my mom would have hated. It is common in crisis mode to grasp for any and all things that may be fixable, but that often comes with a disregard of other outcomes. End of life care does not have to be heroic. End of life care can be about living pain free and aware and communicative and free from pokes or prods or scans or trying this or that indefinitely.
We most frequently refer to how we want to tag out in terms of pull the plug or don’t pull the plug. Or with references to total loss of function – physical or mental. We don’t speak much of the stages in between being totally fine and being totally gone. At any age – 25, 55, 85 – there are no rules demanding a depletion of options in order to buy a few more months or years filled with procedures and last efforts and Hail Marys. I’m starting now to look at my own life (that half century mark is looming) and the things that will should be critical to me to live out the remainder happily. It may be as simple as being able to visit with friends and family while feeling like a five on a scale of one to ten. It might not make sense to bring down my quality of life to a two via extensive efforts just so I can have one more year or a few more months.
These are the difficult conversations we should be having.
Last week my mom got what was essentially a long debrief from her neurologist, the one that finally answered that question – How’d I Get Here. The news was good – the outlook stellar – the culprit a one-two punch from a chronic UTI and the lingering effects of minor back surgery. I haven’t seen the report but I’ve gotten the cliff notes from my mom (and hopefully, Hi, Mom!, she’s not the one cringing right now). Weight lifted. Or it will be lifted as this event moves to something that happened in the before. What turned the ship around, in the end was a long term, low dose antibiotic and the difference has been remarkable. We went from an initial outlook that included nursing homes and permanent care to a phone call, just yesterday, requesting me to bring back all the stuff I’d absconded from her sewing room.
No worries, Mom, I’m packing it all back up, thrilled to get it back to you.
We know we are lucky. We know we have dodged a bullet. We know we need to have to have a few more difficult conversations. I’ll consider them payback for that awkward birds and the bees chat presented to me in my pre-teen years while riding shotgun in the Omni.
That’s the takeaway here – work out your roadmap in advance.
When the crisis bus arrives, you will be glad you do.
I would remiss not to mention at least one of the many resources on this topic, recommended to me by a friend (hello, L!). Being Mortal by Atul Gawande takes a fairly deep dive into end of life planning – very thought provoking.