On holding memories, and breaking open

Take me from the end so I can see the start; there’s only one way to mend a broken heart.

There are some songs that I have worn out during my past four years as a caregiver. They’ve felt symbolic, reminding me of the security blanket my son clings to at night before he goes to sleep. The song ‘Beautiful Dawn’ by The Wailin’ Jennys is one I play often on tired mornings, recanting as a prayer – using as a framework to refocus my perspective and find hope.

The song is all about mending – binding up a broken heart. When I first listened I realized the idea of brokenness is the binding of so many recent feelings, in standing by and watching helplessly as someone loses their memories. I can’t think of a better way to capture how helpless, how feeble the feelings are than to say you feel broken, completely.

I have longed, prayed, plead at the outset for the opening line of this song – ‘take me to the end so I can see the start.’ And, let me clarify – I have not sought to be done with this, because I know the end of this path means that Mom will be gone. But I have prayed for the wisdom, peace, discernment, and understanding that comes from hindsight, wishing I could have some sense of that amid the process. My prayers have been of beseechment - for some pure transcendence, refinement, and patience. I've longed for the “I rose above it all; maintained a CAN-DO” attitude that comes out of neat and clean testimony stories.

In recent weeks, as I’ve been writing these entries and reflected on how I’ve been coping – I’ve realized that in the longing for detachment, for being able to speak of this thing in a neat way while still in the middle of it, I've adopted a distance – often closing up my heart as a mechanism for surviving the day to day. 

The past month on the road to DC for a work trip, I encountered an old friend in the rediscovery of silence. During that trip, I took a break from the quiet to listen to Marie Howe’s interview with Krista Tippett. I was struck by her observation, formed during a period of profound loss after the passing of her brother:

 But I did know that when John died, I thought, “OK, I can either just let this crack my heart open or closed.” And open, the good news about open is I turned around and there were of course the billion other people who live on this earth who have lost a person they love so much. And there they all were. And it was so great to be in their company.

I've found in my revelation that I have not always avoided quiet; it used to be an essential part of nourishment for my soul, and I craved it. But as I’ve tried to balance caregiving to Mom and to my children, and to still assert some part of myself in maintenance of my vocation, friendships, and communal life – I’ve realized that quiet has been a slow, but real, sacrifice.

The closure – the avoidance of brokenness – was folded in amid the hustle, and the coping. And I'll add here, that I actually think it's been completely - O. K. I don’t think I've been in the wrong; don’t feel this post as a confessional. Instead, I've found the process of the past couple of weeks to lead me to this strangely public request.

As we gear up for the walk, I want to continue to embrace the difficulty, of turning and facing inward. But I also want to couple this process with reigniting a longtime desire to commit more time to being a holder of memories for Mom.

And so – with that in mind, as my last request prior to this year’s walk – I’d love if friends share stories and memories of Mom. This has been a dream of mine that has been lost amid the roar of quotidian things. But I want to build a scrapbook with Mom of memories shared by her friends, alongside pictures and other quotes.

Please share them – in comments below, in a private message – in a text. Here and now, or tomorrow and in months to come.And please share them knowing that Mom is here. I am not dismissing her, or requesting these as some premature eulogy. I want to take what I can garner and share everything with her to the best of my abilities.

I am so grateful – that so much of her personality remains amid the ebbing of memory. I plan to take these memories, to bundle them and share them with her. And I am trying to commit to allowing our pain to break my heart open. Sometimes, amid the day-to-day, the self-survival requires closure – or at least the delay of grief – in order to get through.

But sometimes we just need to let things break open, to let memories flow through busy work trips, lonely evenings, songful late-summer mornings and between the footsteps as we walk on Saturday. Thanks for coming alongside us, and thanks for helping me hold tight to these memories.

(If you want to sign up to walk, or donate, click here.)

On Language

My task for this post is to write about the shittiness of watching your Mom lose language – her ability to communicate. And I know it’s a really cheap irony to say – but I lack the words to describe how heavily this loss sits, deep within chamber of empty things that Alzheimer’s has hollowed out within me.

Last week I wrote a quick anecdote about a moment when Mom found words, and how victorious those moments feel. There are countless other stories. Often, Mom gets really mad at us when we leave her alone or she doesn’t feel fully included, and it draws out a sort of pre-teen, FOMO-induced angst. These angers are generally irrational and unfair – levelled at us for going out with friends or taking time to ourselves. They’re feelings I know are 110% driven by the disease, by the way my mother’s brain is being twisted, by the breakdown between the synapses. Usually, time is the forgiveness she grants us in forgetting she was mad. But occasionally, we have other, minor breakthroughs. She realizes she is being unfairly grumpy and angry and will utter a quiet and deeply genuine “I’m sorry” when she puts the pieces together.

These victories also pierce my soul, and feel so welcome because they come with logic, with understanding, and with the gift of grace.

But while I can hand you so many small stories of understanding, there are the uglier ones that I shove into a back-closet of my mind. They don’t make the blog because they’re so unbecoming – exposing the worst parts of the disease, and of my impatience and lack of empathy as a caregiver in responding to my Mom’s helplessness.

Mom’s greatest loss over the past year has been language. She can rarely utter more than three connected words together. She craves sentences, but finds growing gaps between words. She can no longer forge a pathway to lead us to so many of her observations, praises, joys, frustrations, laments, and anxieties.

Simple things we take for granted, like “can you please get me more mouthwash at the store?” have devolved to her following me around the house with an empty bottle of what needs replacing. I can often deduce what she wants to tell me from the words she finds, but in my daily hurry I generally resort to hurriedly filling in the gaps for her and dashing onto the next thing, instead of standing with her and helping her find the pieces together.

I’ve also had to simplify language – terms of endearment - to ease her understanding. I no longer call her ‘Mom’, as it is confusing to try and capture her attention with that term while my own children also call me the same. So I daily refer to her with a much brasher, colder ‘Barb!’ It is almost always underwritten with tones of exasperation, frustration.

The growing language gap makes us all, Mom included, acutely aware of the hastening of loss. Daily, I am grateful that so much of who Mom is remains – her passion for the outdoors, her upbeat spirit, her love of people. But language is robbing us of even these things. She can no longer attempt to solidify some short term memories by recounting them. We all brush Mom aside so much more quickly, because engaging takes markedly more time and we often still leave the conversation thwarted and frustrated.

I’ve been trying to read to Mom – Mary Oliver poems, a book about Amelia Earhart she picked up in the bookstore the other day (another small victory)! But even in the rare moments when I carve out time, Mom can’t always understand what is being read aloud.

In my mind, this – the ability to communicate – is the most grotesque of our losses. It strips away Mom’s humanity, and having to stand by and watch is suffocating. It elicits deep questions of doubt, anger, and injustice. Thankfully – there are still patterns of communication that bind us back to the good moments – most nights while we’re eating, Mom points to the sunset. Whenever visible – it sneaks it’s way in through the side window by our dinner table, and it always catches Mom’s eye. She’ll always try to talk about it, point, smile, and sometimes she even finds the word ‘beautiful!’

But in so many of other, wretched times, I’m left just sitting with the questions – to let the doubt and the anger be felt – as opposed to shunting them off for other moments.

That’s really all I have for now.

Thank you for letting me share an angrier, harder post. And thanks for your support as we continue to talk about and advocate for an end to Alzheimer’s.

On Longevity

Y'all - it's time for the annual Alzheimer's walk again, and it has taken me ages to plant my tush at the computer and bang out a post, send emails, and kick off our coordination effort for this year's walk.

While I always derive energy from seeing so many amazing folks come alongside us -- by walking, donating, and sending messages of love and encouragement - it is also so exhausting. We feel nearly maxed out as it is, and then - attempting to sit down and carve out some thoughts about Alzheimer's caregiving means cracking open a part of myself, being vulnerable, and talking through heavyboots feelings in a public setting.

But here I am, nonetheless. I realize I could send out walk emails and updates without blog posts, and videos. But in part, I feel compelled to ensure that as I ask for your support, that I also share about why it matters, and about what this disease is doing to our family.

This year, I want to think through: longevity, language, and attempting to be a holder of memories.

First off - longevity. So much of why I struggled to sit down and process is because of the longevity of this disease, and the fatigue that comes alongside it. It is so much more empowering to care about causes that can be "won" -- and to fight fights that are shorter and hold more hopeful outcomes.

But the current reality of Alzheimer's doesn't afford either of these options. We are still here, fighting small, daily fights for Mom to find words - to convey what she needs - to find meaning.

I've had two, contrasting observations over the past year:

1. My Mom's friend are fiercely loyal and committed. Even as Mom now struggles to communicate, and has lost components that make social outings easier (table etiquette, ability to choose options on a restaurant menu, etc), her friends still call, still come. They still show up, still reply to email or text-requests for support, and have been committed to helping in whatever way they can. One dedicated friend has even suggested thoughts/plans for building out picture or communication cards, so she can keep communicated Mom after her language is gone. Observing the commitment of so many amazing women has been moving and has bolstered our immediate family time and again.
2. We're all a bit lost with how to grieve what Mom is losing (and how we are losing certain aspects of our relationship with her), while still trying to fight for her presence and her personality as best we can. We keep trying to take her to things she likes -- out hiking, for a meal at Chick-fila, to watch a UK basketball or Redskins football game on TV. But as she gradually struggles to follow sports games, or has begun forgetting the activity within a few minutes of doing it - this becomes so much more challenging. I know I feel the emptiness and hopelessness on a daily basis, and am constantly confounded by meaningful ways to grieve while also loving and celebrating my strong, resilient Mom - who stands in front of me each day.

More than anything, Mom seems to crave time and presence, which is something we are all struggling to give amid our busy days. I am trying to slow down, and have found some well of patience in the past one-to-two months that had been lacking earlier in the year. 

The other day, in one such moment, Mom was trying to tell me she needed something. So often at the outset now, she'll struggle to find a single word, and will give up in defeat. 

"You can do it! I'm not in a rush, we'll find it..." I said, coaxing her on. 

She motioned, pretending to wipe her arms, and pointing to a direction I sensed indicated downstairs.

"You need soap?" I asked.

"YES!" she exclaimed. She jumped as she spoke, and her eyes danced as they always do when she is excited, or  claims a simple win. 

She clasped her hands together, quietly exclaiming, "I did it!" She stood there, beaming -- reveling in the moment.

She was so proud of herself; and in that moment, my heart swelled and I felt tears well up. These are the small victories we encounter amid the longevity. I am grateful for them, as they sustain us down a long and challenging road.

Thank you for walking alongside us on this journey. If you're able, we'd love for you to walk with us again this year - details below and link here.

Lexington Walk to End Alzheimer's

Saturday, August 26

Registration, 9:30; Walk begins at 10