Before I Forget — Things I've Learned from My Mother's Dementia

Pay attention to the list (photo credit: Glenn Carstens-Peters)

I am not particularly good at making lists. I know what needs to get done and when, and only when the world feels like too much to handle do I feel compelled to write things down in checklist form. It’s a bit strange considering I write just about everything else down that comes to mind as a writer and creative.

But I’m going to strongly advocate for this list.

It’s one of the few that I have penned. I’m sure there are similar lists out there, but this one is mine. It’s well-worn and lived in.

And I’m sharing it because I think you can benefit from it – even if a loved one isn’t ill or disappearing in front of your eyes. It’s a different kind of list, one that doesn’t bring the kind of joy and satisfaction from checking the box. Each time I am reminded to turn to it, I think of the Avett Brothers Murder in the City where brothers Scott and Seth sing these final lines:  

If I get murdered in the city
Go read the letter in my desk
Don't bother with all my belongings
But pay attention to the list

Make sure my sister knows I loved her
Make sure my mother knows the same
Always remember there was nothing worth sharing
Like the love that let us share our name
Always remember there was nothing worth sharing
Like the love that let us share our name

And with that, pay attention to the list.

1.      Life moves slowly, often predictably; then it changes all at once. Recognize this as the rule rather than the exception. You’re not being singled out.

2.      Being right doesn’t matter. Showing love does. 

3.      Show up.

4.      After you’ve taken it personally, don’t take it personally.

5.      Listen. There’s a story to decode underneath the misidentified people and places. There’s a memory trying to rise to the surface.

6.      Ask for stories. Write them down. History is fading before your eyes. 

7.      Grief is not an event. It is a series of high and low tides that never cease.

8.      Costume jewelry can save a lot of heartache.

9.      Watch the film Alive Inside and see how playing music awakens the brain, reaches that far off part that remains uncorrupted. Tap the well that appears to be empty.

10.  Hide-n-seek is not only a kid’s game. Approach what’s missing with a kid-like curiosity and desire to find.

11.  Give compliments. Tell her she looks beautiful, how she reminds you of a special time.  

12.  Enjoy the silence. Sometimes presence is enough.

13.  Take walks. Slow is still active.

14.  Pull photographs before the funeral home asks. They are memory triggers for conversation, not just a five-minute carousel of a life lived.    

15.  She’s your parent, but his spouse. Same person, different interpretations. Remember and respect it as they would want you to do.

16.  Let her eat what she wants to eat. We’re no longer staving off anything.   

17.  Ask often: what really matters at this moment?

18.  Denial: don’t let it be the disease you suffer from.

19.  Making up for lost time, lost ground, lost arguments is unachievable. Making the most of the moment is achievable.

20.  Become an advocate for their health and well-being. This is as important with family members as it is with physicians.

21.  You are of little good to others if you are not taking care of yourself.

22.  This isn’t forever.

23. Find community. Grieve together. Lift each other up. Keep walking forward.

24.  This is a list for dementia, for Alzheimer’s. But don’t let that stop you from using the list. 

Thoughtful leadership requires more of this overlooked habit

“I don't have time to read – I’m too busy.”

For years I’d hear that kind of a remark from a leader and assume I had no idea the kind of pressure they were under. Being none the wiser, I would give them a pass. After all, it is hard to make time for something that isn’t a priority.

Today I know better.

I get that some people don’t enjoy reading and that it feels like more work on top of the work they already must do. But keep reading (or stick with me through this post). It doesn’t have to be drudgery, and I believe it can become a priority if we focus less on the act of reading and instead look to outcomes reading presents.

Recently, James Clear shared this thought on the value of reading and it struck a chord:

"Reading is like a software update for your brain. 

Whenever you learn a new concept or idea, the "software" improves. You download new features and fix old bugs."

That should push us to think about how many “old bugs” we have that need fixing, as well as how many new ideas that could be of real benefit if we’re open and curious enough. 

Now imagine the leader of your organization working on Windows 98, using a decade-old Blackberry, and sending email from an AOL account. They’ve signaled that these tools are necessary if not important, but refused relevant updates for their tools, processes and practices to advance the business. 

Processing new information, and then applying that which is useful or helpful, is in part the art of remaining relevant — and we need our leaders to be relevant leaders who know where to guide us and our organizations. 

Looking back, I can pinpoint which leaders and mentors of mine were avid readers and curious thinkers, in part because we talked about books and new ideas. It shaped my thinking and encouraged me to dig in and dig deeper.

Conversely, I am also reminded of those whose leadership style was less about curiosity, innovation and new ideas. Instead they held fiercely to rigid views and a “this is how we (meaning you) do it” mentality.  

Still think you don't have time to read?

In the last three years I've nearly tripled the amount of books (ideas) I consume. Like you, I’m still the same busy human — running a business, raising a family, and being pulled and distracted in multiple directions. My consumption of deeper content (vs. social scanning and intermittent browsing) has grown by listening to books — in the car, while exercising or walking the dog. This is not a new idea, but I was slow to adopt it. But I’m choosing to steal back some of that lost time, reclaim bits and pieces of it, while also leaving enough margin to think and also unclutter the mind.

Last year, I completed 71 books. It wasn't a chore. Only a third of the titles were overtly about business. I track them not to “keep score” but simply to remind me of what I’ve read and what I might want to revisit. A log also reminds me if I’m active in my reading and if I’m getting derailed.

I'm continuing to gain perspective on things and people that I was previously ignorant about (software update). And no doubt I'm thinking differently and more broadly than I did just a handful of years ago. My curiosity quotient continues to rise.

Further, a diverse selection of reading material can open us up to becoming more empathetic and aware of those around us. But it requires us to humbly approach new ideas, different perspectives, and unique voices with an “I don’t know what I don’t know” attitude. Although this HBR article isn’t a recent one, it’s still relevant. And it’s comforting to know we’re in good company as we embrace this critical leadership habit.

We owe this kind of upgraded thinking and curiosity to our clients and colleagues, family and friends. We also owe it to ourselves. And it’s as easy as opening a book or pushing play on an audio version.  

So to all busy leaders and those who aspire to lead others: read to learn, read for enjoyment, but also read to lead. There’s no doubt that you, and those around you, will see the benefits of being not just well read, but more engaged and curious in contrast to that time when you didn’t have time to read.  

Four missteps organizations make with storytelling

If you asked a variety of people in different roles across your organization – what’s our company story? –what kind of reaction would you get? Would your colleagues accurately tell the company story? Chances are you might hear them say something like: “that’s not part of my role” or “marketing is in charge of that” or “I don’t really know.”

It begs this important question about storytelling – whose job is it anyway?

The marketing department? C-suite? Management-level employees? Those working the front lines with stakeholders? Sales teams? People behind the scenes? Those with the longest history within the organization?

The short answer is – yes. Yes to all of them. Storytelling is everyone’s responsibility.

However, it’s not surprising to see most organizations delegate the role of storytelling to the marketing department.

This is misguided thinking and where many organizations miss the point of that all-too-trendy term – storytelling. Here are four missteps that organizations commonly make with storytelling.

1.     Confusing story management with storytelling

Someone or some assigned team needs to take the lead in unearthing and positioning the organization’s most important stories. It should be their task to write them down for the sake of sharing in-house with employees and externally/online for stakeholders and customers in a clear and consistent way. The marketing function is a logical choice for establishing these pieces and developing the repository where the organization’s history, key messages and must-share stories can be found.

But let’s be clear – this is simply the act of story management.

What we’re talking about is storytelling – the verbal articulation of something deemed important – and that should be everyone’s business.

2.     Failing to connect the story with actual storytellers

Most of us don’t like the idea of being marketed to or sold something, at least not until we are ready to engage on our own terms. That fact alone makes every other function outside of the marketing department, and the vast majority of employees in an organization, critical storytellers. When people within an organization are empowered to tell stories about the business and their business – what we do, why we do it (purpose), who we seek to serve, why it matters, how we’re different, and why you should care – it is no longer marketing or sales. It is the sharing of ideas and of a larger ideal. It is storytelling.  And this becomes immensely valuable in cultivating a desirable work culture, attracting and retaining new hires, and stirring the curiosity among people who become clients, customers and advocates.

3.     Overlooking the importance of empathy and delivery

Consider this excerpt regarding the nuance of story from the English novelist E.M. Forster:

“If I say to you the king died, and then the queen died, that is a sequence of events.

But if I said the king died, and then the queen died of grief, that’s a story. That’s human. That calls for empathy on the part of the teller of the story and on the part of the reader or listener of the story.”

Read this again:  “Empathy on the part of the teller of the story...”

That is significant.

If we rely on marketing for our stories but don’t have an intimate knowledge of those stories ourselves and how to tell them – with empathy – our attempt at telling stories becomes little more than a list of facts, talking points, or a sequence of events. Worse yet, if we rely solely on marketing to be the mouthpiece of our stories we miss untold opportunities to engage people on the importance of our purpose and our work.   

And there’s this:  “...and on the part of the reader or listener.”

This is an important reminder that our audiences will engage and process our stories differently.

Every time I deliver a messaging document to a client for the first time, I ask them if they will humor me as I read it aloud. They are perfectly capable of reading it on their own, but I know that people interpret what they hear differently from what they read. Inflection is added in the right places for needed effect, and my voice becomes the audible highlighter of words and ideas that they otherwise might skim over.

We need the marketing team’s help to craft stories and position them for a compelling read in all formats – from the tweet that piques interest, to the website copy, to tangible printed material that compels a stakeholder to slow down and sit with our words.

But we also need the c-suite to lead by example – to know and convey stories with the passion we should expect from leaders, so that managers and employees (as listeners) can make a personal connection and become storytellers themselves by following their lead.

Marketing has its place.

Content is valuable and can be readily accessible.

But there is no replacing the sound and impact of a point well-made coming from a leader. 

4.     Ignoring the history of a story and failing to pull from it

David McCullough, the Pulitzer Prize-winning American author and well-known historian, said this about the importance of history and story in a 2004 commencement speech at Ohio University titled The Bulwark of Freedom:

“We have to know who we are if we are to know where we are headed. This is essential. We have to value what our forbears did for us or we are not going to care about it very seriously, and it can slip away.”

While McCullough refers to the story of one’s country and the importance of knowing history as it informs the future of a nation, the same can be said for nearly any organization or institution. Past and present stories provide the factual and credible narrative needed to set us apart from others. It is what we must lean into, it is our compass as we seek to chart new and exciting futures. 

Is your organization recording the stories that matter by writing them down, reciting them and sharing them regularly?

Do you and the people in your organization know its rich history, its defined purpose and how it intends to make a difference?

This isn’t arbitrary work. Your organization’s reason for being is rooted in story.

If you don’t know the story, you can’t tell it.

And if it’s not seen as something to take seriously, then there’s truly a lot at risk of slipping away.