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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. 


READING OLD NOTES: gaining insight through reflection

write ideas .jpg

I keep a stack of moleskine notebooks and serviceable knock-offs on a bookshelf in my writing studio. They are filled with meeting notes, doodles, writing prompts, sketches, and lists of peculiar word pairings that I imagine using in future pieces. There’s also some wise advice I’ve picked up and scribbled into the margins during this work-and-life journey.

I admit that once these notebooks are filled, I rarely pick them up or thumb through them again.

That is until recently.

I had been feeling anxious about a writing assignment and a personal project. I was struggling to start, to finish, to find the right words. They weren’t coming. More than writer’s block, it was a questioning of my abilities to perform my core work.

So I began thumbing through old words. Past projects. Thing that at one time seemed daunting. Things that felt important to commit to paper.

I wasn’t looking for anything particular. I was simply revisiting and reflecting on past experiences and old ideas.

And it made me stop and think: why is it that we scan old photo albums (or file folders) with a sense of wonder and excitement? Why does Facebook send us anniversary milestones of friendships? Why do we painstakingly curate playlists in Spotify from the 80s or 90s when there’s so much new music across any genre for us to enjoy? Why do we show up and honor, in our own special way, those whom we’ve lost?

 

Because we need to be reminded.

 

Reminded of what’s important and what matters;

what we’re striving for and what keeps us in the game;

what gives us life and purpose, hope and joy.

 

Looking for the right words and answers continues to be an imperfect and ongoing search. If not now, then assuredly later. And you, I’m assuming, will have your own specific search that demands resolving – from the mundane to the monumental challenges.  

As I thumbed through some old notes, I found some words of advice and inspiration, and a few that served as a kick in the pants to keep going, to pick ourselves up, to get better, and to never stop.

In some cases it was as if I was reading these points for the first time. For others, I had a different perspective thanks to the experiences I’ve has since I first scrawled the words.

Maybe these words – forgotten and tucked away in a notebook on a shelf, from writers, creators and, more importantly, doers – are exactly what I need to reflect on when the load feels heavy. And maybe you, too. Maybe these words needed some light thrown back on them to push us forward. Perhaps new eyes on these once-written, spoken and acted-upon words can breathe new life into whatever it is we need to do but haven’t.

I hope they are helpful, encouraging, or a kick in the pants. If they are, then write them down. Put them in a notebook. Add to them. And consider revisiting them from time to time.

Traveler, there is no road;

you make your own path as you walk.

As you walk, you make your own road,

and when you look back you see the path

you will never travel again.

– Antonio Machado // poet

 

 

“How we spend our days is, of course, how we spend our lives.”

– Annie Dillard // writer

 

 

“When we are merely competent, the value of our work is diminished until it can eventually be outsourced to the lowest bidder – making us a dispensable commodity.” (Don’t be merely competent. Be unmistakable.)

– Srinivas Rao // business author, podcaster

 

 

CRITICIZING IS EASIER THAN CREATING.

(shut up and get to work.)

 

 

The trouble with comparing yourself to others is that there are too many others. Using all others as your control group, all your worst fears and your fondest hopes are at once true. You are good; you are bad; you are abnormal; you are just like everyone else.”

– Sarah Manguso // poet

 

 

Emotion before evidence. Otherwise data will kill a good story on contact.

– Todd Henry // writer, creativity consultant

 

 

“Keep being curious. Keep being a student.

As soon as you stop doing that, as soon as you stop playing,

you stop creating great things.”

 – Matthew Luhn // writer, Pixar Animation Studios

 

At the end of my suffering, there was a door.

– Louise Glück // poet

 

 

If you listen to everyone, you will lose yourself.

You were hired for your expertise. Deliver that.”

– Ruth Carter // costume designer for Black Panther

 

 

But what if I’m not a real writer/artist/entrepreneur/etc.? Just sit down and do it.

What if my idea isn’t any good? Just try. Do it anyway.

What if nobody sees it? It’s not about who sees it, it’s about why you did it.

What if I’m stuck? When you’re at an edge, push through it.

What if this was a gigantic waste of time? Trust that it won’t be.

 – Allison Fallon // writer, coach, adapted from perspectives on writing

 

 

DARE. MIGHTY. THINGS.

Then do the work to achieve those things.