Accepting We Won't be 65 Until We're 90

A Stony Creek Diary post reflecting on ten years of living in a family impacted by elder cognitive decline

For new subscribers, Stony Creek Diary pieces are personal essays. They happen very occasionally and this one was inspired by… well, I think you know what it may have been inspired by! I also included a voiceover because people do seem to like the option to listen rather than read but fair warning, parts of this were hard for me to read and my audio editing skills are, let’s just say, limited. I’m hoping my authenticity is part of the brand. :)

I cut out a lot of my first draft and I could have kept going. This is a huge topic. We haven’t even scratched the surface and there are many aspects of both human nature and our culture that make moving this needle a really uphill climb. But we can’t ignore it. And today I’m hosting my mom and her aide and a family friend down in Stony Creek for lunch - wish me luck. There are long-ish car rides and a barky dog and stairs and tight bathrooms to navigate. We will persevere.

And then there is this incredibly beautiful feature in the New York Times Magazine. (It’s a gift link.) This family is in a different situation than ours but it definitely connects to my main points.

Accepting We Won’t Be 65 Until We’re 90

It’s no secret to many that my sister and I have been focused on providing eldercare support for my parents as they got into their late 80s and 90s. It’s a lot. And it means a lot to us to support them just as they always supported us - which was with all the love, always being humans who understand life is complicated and always wondering how they could make things easier for us. We want to show up, as they always did for us - something I’ve grown more and more appreciative over time. They were rare and marvelous parents and we are extremely fortunate. My dad passed in December of 2022 and my mom is a parent in terms of the noun but not the verb, really, and that’s by no means a criticism. Nouns are important!

This piece has some political framing but the heart of it isn’t about politics at all. It’s a call for us to grapple, as a society, with how we come to terms with extended longevity and live with loved ones who move into a stage of life marked by neurological decline. People are living longer and longer but it’s hard to get our minds around the fact that some very big changes come with living this long - we’re not holding steady at 65 for thirty years. It’s hard on every level - hard for the aging person and hard for their family and loved ones - in a world that would really prefer none of this exists, or it only exists for a small handful of the very unlucky. It’s hard and it’s impacting pretty much everyone. If it isn’t your parent, it’s a spouse’s parent. It’s an aunt or uncle or a dear family friend. And one day, it will be us.

It’s the most marathon-y, persistently challenging thing I’ve ever done. We recently received a letter from my mother’s long term care insurance provider that her (very generous and extremely helpful!) benefits were “nearing exhaustion.” I forwarded it to my sister with the caption, “We hear you Genworth - we’re all nearing exhaustion!.”

But first, some framing.

For those of you who know me beyond the acquaintance level know that I am a political junkie. I’m on the more mild end, but them’s the facts. I grew up in a family where my parents were very invested in keeping up with the news and maintained a faith their entire lives that it mattered who we voted into office and that public servants could indeed help us create a more humane and just country. My dad in particular was a patriot in a moving, non-ironic sense which could be surprising to people who were familiar with his dry humor and deep appreciation of irony. It was something I struggled to understand as a younger person; my parents would not have been caught dead flying an American flag outside our house (too “one the nose;” maybe too jingoistic or something?) but my dad was proud to have served in the military. But from my vantage point in deep middle age, things that seemed to be tensions now seem to be the texture of individual character. My sister and I are likely to put his ashes to rest in the veterans cemetery in Bourne, Massachusetts and that feels very right.

So as you can imagine, my in-box and podcast feed has been flooded with conversations about Biden dropping out of the race after a debate performance that was incredibly difficult to watch. I listened to a few of the podcasts and read a few op eds. Most of it was at the strategy and tactics level - is it even possible to replace him? And he did have an excellent performance at the rally the next day. Who would replace him? Would it increase the chances of winning? All the things.

What I have not heard anyone say, whatever is going on, and I am not even going to speculate, is if these are symptoms of something and the President gets a diagnosis that just cannot be buried or ignored in, say, August, what then? There may not be a choice here, people. It is actually kind of amazing that no president in my lifetime has had a serious health event where they had to step down because whatever perfect bill of health is provided for in annual physicals, terrible things like cancer, strokes, aneurysms, etc  just happen whether you’re the president or not.

And that brings me to my plea that we all start to get more real about living with family members in neurological decline. My family has been living with it for at least ten years. I don’t really want to even go back and parse when it first became a suspicion with my dad, when he was struggling with his balance and, as a lifelong reader, having trouble remembering what he had read. That was probably more than ten years ago and that idea is completely depressing to me. In my head, I mainly remember him as his vibrant self, a respected man of the world, and his diminishment was just incredibly painful and hard to admit. So I’m calling it ten years - eight-plus with my dad and 18 months thus far with my mom, with some overlap. The overlap of having two parents with serious neurological issues was probably some of the most challenging months of my life and remember, I led a boarding school through COVID. (And by the fall of 2021, all of that was going on simultaneously. I shudder to remember it and I don’t wish that level of constant demand and constant feeling of being inadequate on anyone!)

Culturally, I think our basic concept around Alzheimers and dementia was shaped in the 1990’s by Elegy for Iris by John Bayley about brilliant author Iris Murdoch’s descent into altzheimers and the accompanying movie. And then in 2007 there was the hugely popular Still Alice, a novel about a woman with early Alzheimers.

When I was growing up, I remember an elderly neighbor people would refer to as “senile” but it was still pretty rare. And in the 70s, there were just a lot fewer people who lived into the 80s.

And the giant catastrophe version of Alzheimers, which is so well suited for tragedy, is about high functioning people over a relatively short amount of time becoming vacantly staring zombies or child-equivalents. I think the last scene of the movie of Still Alice is Julianne Moore’s titular character drawing random lines with crayons at the kitchen table - at least, that sticks in my head. It’s about the brave, struggling caretakers and family members trying to pick up the pieces in the wake of this devastating disease. And for sure, there are versions of this disease that do exist and I don’t mean to downplay that.

But for a large percentage of the 80 plus population, an eventual diagnosis of Alzheimers might start off with persistent balance issues. With my dad, his most disabling symptom for many years was how the disease impacted his mobility - his doctor said to think about it like he had Alzheimers in his legs. Physical therapy could help but not cure it. This went on for years of slow decline, along with the growth of other depressing and dignity-impairing symptoms like having some trouble manipulating utensils at meals as his mental acuity frayed at the edges.

It’s a good reminder that a brain disease is going to impact more than short term memory. It can affect emotions and one thing I’ve observed from four-plus years of being a regular presence at an assisted living is that while a core of a person might remain the same - and that has been the case for both my parents - you can lose control of your personality. Your loved one can have stretches of paranoia or take an incident and retell it so many times, with small details shifting in each telling, until it’s a much more dramatic and upsetting story - yet the person sounds completely credible to someone hearing it for the first time. And I’ve seen some of my mom’s peers at the assisted living turn downright mean and physically aggressive.

And sometimes being overwhelmed by stimuli is an early symptom, like having trouble comprehending a menu in a restaurant and I saw this with both my parents. We got used to walking my dad through a menu and helping him select a few items. My mom just asks us to order for her now and it’s not because she can’t read. And a few years ago, my mom stopped going into stores because she found them too overwhelming. Other symptoms of this terrible progressive disease - a friend of mine’s dad’s speech deteriorated and eventually he didn’t speak at all for several years before he passed. Sleep can get affected in weird ways. My dad never had a sleep issue but my mom has.

The line between cognitive decline and dementia is thin and the years can stretch on with loved ones unclear where you’re at in the journey. There can be days and weeks of relative normality, although I also think this is influenced by the frog in boiling water analogy - our expectations get diminished along with capacities and any reappearance of the person at closer to their full capacity is so welcomed, it’s easy to have confirmation bias. 

I also suspect that the older person gets really good at faking it. Relating it to my own experience, I need to schedule a hearing test because in certain environments, I’m really struggling to hear people, especially people whose voices are at a certain pitch. And after one, “I’m sorry, I didn’t catch that” chatting at a noisy restaurant, I often resort to context clues and move on to the next topic. I feel like I’m about a million years old and socially it’s a drag to have to keep stopping the conversation. And I think the people who love us want to be the same person they were and have the same relationships and they don’t want to be a drag so they nod or make a neutral comment and appear to understand what we mean when they may not at all. 

And think about this - at a certain stage, a person with neurological decline is navigating the knowledge of the decline, but then it just becomes their world. 

Cognitive and neurological decline is a complicated, unpredictable phenomenon. It is not unusual for it to go on for years in its gradual, haphazard way. Someone can be quite lively mentally in some ways but struggle in others. It has the capacity to change basic things about yourself - from your personality to basic functions of daily living with ideas of yourself that you are a “good sleeper” or you have a hearty appetite or that you love a long hot shower. All fungible, it turns out.

We need to adjust our cultural narratives. Alzheimers and dementia are not rare diseases; they’re commonplace, like hypertension or diabetes. And unlike hypertension and diabetes, we have few tools to combat the effects. 

We have a lot of shame around all illness or signs of mortality,  but I have perceived a specific lack of acceptance and automatic minimization around around any discussion of Alzheimers or dementia. He seemed great last time I saw him. That sort of thing. It felt like a huge bummer to bring it up when my dad was in his 80s and even more of a bummer than if my dad had cancer or another disease. I’m sure the ambiguous nature of its progress has something to do with it and of course, no one wants to face the reality there’s a really good chance in your 80s you’re going to enter a second childhood.

We all seem to agree 90 and over is really old and then it’s ok to slip. At 93, people pretty much expect my mom to be a little dotty and there’s no longer any shame about it when I talk to people. But until you round the horn into your 90s, it is really hard to accept and accommodate and I wonder if our problems in accepting and accommodating just make it harder in the end for the older person as well as ourselves. 

We like our old people to be largely themselves, the adults who care for us, rather than the ones who need looking after themselves even though there are large parts of their lives where they can still find engagement and joy. I feel like we’re in this all or nothing bargain with our older generation - you’re 65 until you’re 90 or else you failed the test and we are all left here, heartbroken and and refusing to discuss it.

My mom is a “do not go gently into that good night” personality and I think her unwillingness to accept my dad’s limitations - getting him out of the house even when it was hard, for example - both kept him going and at times became really hard to watch. Sometimes she would take his changes in communications personally and was determined that if he just tried harder, he could still be the person he used to be. My mom’s will is indomitable and inspiring and sometimes exhausting and very occasionally slightly tragic in its futility. There are lessons to be learned in both directions.

As people live longer, our families are in a new reality. Longevity is a gift and even in the last month of my dad’s life, his eyes lit up and he smiled when one of us walked into the room. But to ask people who are declining to still be their old selves for us is wrong for them and wrong for us. However hard I have missed my parents over this long stretch and however honestly impossible it is to accept that I will never spend time with their old selves ever again, feeling that pain is part of the beauty of love. 

So I will end by asking all of you who take the time to read this - think about how we as a culture move forward to have meaningful relationships with our declining loved ones. Declining is not declined; it’s not gone. But the relationships do need to be different. How do we talk about it and normalize this process and this struggle? How it is not an insult to the older person to bring it up? And how can our older loved ones appreciate all the facets of life they can still enjoy and partake of, while relieving them of the burden of having to try to be 65 forever? How can they be respected but live within reasonable expectations instead of being a continual disappointment?

I wonder if this denial is so hardwired, maybe it’s just impossible to overcome. But we can always try to move it an inch. For them and for us.