Don’t You Forget About Me Part II – Memory (and Mortality) on My Mind

It is ironic that, if you’re lucky, you’ll end up getting old. And, yet, most people (Americans, anyway) are in complete denial about it. The vast majority fight any changes to their lifestyle until they find themselves in a full-on crisis. Human nature? A fighting spirit?

Letting go of a phase of life is hard, especially when accompanied by stubbornness (that is possibly – probably? – driven by grief and fear). Amusingly, from my observations, there is also a dose of ageism and othering, as in, “old people live in ‘those places’ and I don’t want to be surrounded by old people” (to be fair, given that I continue to think I am 25 and that ship sailed a couple decades ago, I can see more clearly now how this cognitive dissonance could happen). And then, of course, there’s our culturally-driven death denialism. This excellent TED Talk and NPR story – Death Is Inevitable. Why Don’t We Talk About It More? – lays out very honestly the reality that life and death go hand in hand. What are we afraid of?

I get that it’s hard to face a future where you might be less capable than you are now. Or dead. But, also, if you don’t approach that future proactively, you put someone who loves you (or is responsible for you) in a position of having to do it for you. And what’s really not fun? THAT. Because being in a situation where a decision is made for you doesn’t feel great for anyone involved.

The website and podcast Best Life Best Death provides great insights and resources for these types of discussions and decisions. It turns out that as scary as it might be to think about, it’s actually quite empowering to face into it. Atul Gawande’s book Being Mortal: Medicine and What Matters in the End, similarly, discusses end-of-life care and aging, specifically with the lens that medicine CAN – and often does – prolong life, but it doesn’t distinguish between quality versus quantity.

One aspect of aging that Gawande discusses that resonates with my lived experience is long-term care. This can be achieved through in-home care or a care home/assisted living-style place. In-home care can work up to a point – it depends on how many hours of care are needed, if there is more than one person in the home, if you can find good caregivers. With in-home care the vetting, hiring, firing, and oversight of caregivers falls on the family. In a care facility, that level of management gets taken care of. In my experience, the economies of scale flip dramatically toward a care facility when overnight care is required. As I mentioned in my first post on long-term care, it is a big, complicated, and multi-faceted subject.

Gawande notes that the traditional nursing home, which is probably what comes to mind if you are 30 or older and haven’t been in the trenches of caregiving in the last decade, focused so heavily on resident safety that the living environment was, well, institutional – personality-less, depressing, and uninspiring. More and more community-focused and less institutional options exist now, like the one in the Netherlands highlighted in the NPR episode I spoke on several months ago (link) or the one in France (link) or the one in Canada (link). They may not exist in the U.S. in the distinct forms reflected in those examples, but there are definitely independent and assisted living communities that nurture the same kind of vibe. Where my mom lives, for example, though it’s not a village design per se, residents move about freely, have choice with their daily meals and activities, and staff provide creative programming to keep residents engaged (ie no one is sitting in a wheelchair in a hospital-like corridor staring into space for hours on end).

These communities answer the concern of not wanting to be isolated, institutionalized or separated from the rest of society as we age. For people of sound mind right up to moderate dementia, they are a downright dreamy compromise between maintaining one’s autonomy and agency while living in a place that fosters community and can handle the inevitable issues that arise as one ages (falling, complicated medication management, mobility issues, impaired driving, etc.). And that’s great.

BUT, when you are talking about someone with Alzheimer’s or dementia, it’s a whole different ballgame. As those diseases progress, the bucolic concepts of integration into an age-diverse community and free-will are just not realistic.

I really stumbled in Gawande’s book and in listening to the NPR piece about adapting care models in the US over this issue. It’s this grand philosophical abyss: what happens when a person no longer has the ability to make decisions for themselves, but also isn’t actively dying any more than the rest of us? There isn’t quality to preserve or new memories to be made or even old memories to review. It’s just an existence. My mom has all the free-will in the world, but doesn’t move of her own volition. She doesn’t speak or make any decisions either. She is well-loved by her care team, her needs are met, and she seems happy. Which is an enormous relief for me. But, if she weren’t, and many aren’t, what really can be done about it? It’s much more fuzzy from this vantage point to expound upon what matters most in the end. The end, when it involves dementia, can be quite a lengthy state of pending for all involved. I’ve taken to calling it grief purgatory.

There is an absolutely perfect discussion of this challenge in a super funny/sad podcast called Let’s Not be Kidding. Episode 6 – The Bus Stop at the End of the World – sets up so much of what I have been trying to write about but keep getting tripped up over. Listen to minute 3:30 to 5:50 or so…it even mentions the, gulp, costs (which I will get into another time and, of course, impact many people’s proactive efforts – if you can’t afford a care home, what else is there to do but wait until the crisis comes?).

My mom has lived at the bus stop at the end of the world for five years. Even here, we used to go for coffee and for long walks in her neighborhood. She would join our family for Thanksgiving or Mother’s Day or just to visit. Now it’s a project to get her from her bedroom to the community room. It’s a continuing evolution to less. I consider the village style residences and the premise of changing long-term care in the U.S. for people with dementia, as discussed in the NPR episode I was interviewed for, and I’ve decided that we have to face the fact that there are two different situations happening here. One is early stage dementia or just a nice, older person trying not to be a burden on their relatives and choosing to move to some sort of retirement community. And then there are the locked floor stages of dementia and Alzheimer’s with assistance required for all activities of daily life. And these are vastly different. The needs of the patient as well as the families throughout each of these stages and levels of aging and caregiving are also vastly different.

Oddly, the most held I’ve ever been in this decade-long journey was when my mom was on hospice and seemed to be actively dying (spoiler alert: she didn’t). It was the early years when we suspected Alzheimer’s and just after her diagnosis when I really could have used the knowledge, understanding, and support that comes with hospice. I had literally no idea where to even start in those days. It’s been 10 years now and I speak with people every few months who get sent my way one way or another because they are facing similar questions and concerns and don’t know where to turn. Existing support systems – logistical, financial and emotional – are woefully inadequate. Families and caregivers across all income brackets need help to function – and to keep functioning for the many years that these diseases interrupt a life – until someone figures this whole dementia issue out.

I haven’t even gotten to the part where the needs of dementia patients are 24/7/365 and typically beyond the capability of a single individual. And that universally across the US the number of domestic workers/health aides/caregivers is really low and the quality and reliability of these care providers is wildly variable, both for in-home care and at a facility. This is a profession that is traditionally underpaid and these workers need support to achieve adequate wages, health insurance, paid leave, job training, and retirement planning for themselves. If domestic workers aren’t treated with dignity and can’t achieve a living wage, how do we expect to care for our aging population as the number of people living with dementia increases?

I don’t know where the oxygen mask is in this post, but I felt all this needed to be said (and maybe that’s it, I just needed to put it out there and get it off my chest – surely there are others who are or will experience this, and there’s some solidarity in that). Adjusting the architecture, design, and ethos of care communities is surely one piece of the puzzle. However, as ever, fundamentally what makes a home are the people in it and how they care for each other. The people who are losing their agency, their families, and their caregivers need to be integral to and at the forefront of making long-term care better.

And, with that, I need to publish this thing once and for all!

Deep breath. Somehow, we got this.