What are We Without Our Memories?

My mom forgot my birthday for the first time six years ago. As an almost-forty-something, I didn’t need a big birthday party or lots of attention or anything like that. But it is a stunning milestone for a mother to forget the day that she brought her baby into the world. And for said baby, it was incredibly painful the first time it happened. There are some things that seem like they would be impossible to forget.

Especially for my mom, a woman who embraced motherhood fully and in every way. Raising my brothers and I was the best job she could dream of. That’s not just me putting on rose-colored glasses and saying so – she told me that. When I say our mom was our biggest fan, I am not exaggerating. She showed up in so many ways. She was on the sidelines for all of our games, only missing them if there was a conflict with another sibling’s schedule. She attended every ballet recital (a bouquet of flowers in hand), swim meet (day-long affairs in over-hot, heavily-chlorinated air to see your kid swim for 30 seconds), soccer game (sometimes taking up entire weekends for months on end, game after game), hours and hours of shuttling us to music lessons, baseball practice, soccer, tennis – you name it, we played it. Even in the early stages of Alzheimer’s she was there on the sidelines for Kindergarten soccer and witnessed her grandson’s first goal ever. It was 28 degrees, the field was covered in frost, her memory was failing, she was frightened about the future, her world was shrinking – and there she was. She showed up time and again – for us, for everyone in her family, and for her friends.

Don’t get me wrong, we were far from perfect and I am pretty sure she had her moments when she wanted to run out of the house screaming to escape from us and the insanity we were causing her. In fact, she actually did so on at least one occasion, prompting our next-door neighbor, who had been out gardening, to come over and put his arm around her to comfort her. It kind of became neighborhood lore. So I know she thought we were royal pains in the ass sometimes – and we were – and surely she was overwhelmed keeping track of us and our schedules and our issues and, of course, the never-ending laundry. I imagine she had her moments of cursing us quietly under her breath, or venting to her friends or sisters on the phone. I am certain there were lots of things that got missed. My mom was chronically last minute in her approach to life. Her desk was a jumble of papers, binders, and – to my mind – complete and utter chaos. It looked like she didn’t sweat the small stuff, but I think the truth is that she was the world’s biggest procrastinator. You could count on her, but she’d make you sweat it out, tumbling through the door with the cake or hors d’oeuvres or whatever she had promised to bring just seconds before the start of a big event.

For my birthday, she would hang streamers in the dining room and bake a cake from scratch. She took cake-decorating classes to improve her skills, and – as cliche as it is to say it – she baked love into every morsel of every item she made. She planned epic treasure hunts in the woods for my friends and I – two-hour hikes with elaborate clues and “treasure” hidden along the way that ended at a river where we would feed the ducks with stale bread she had been collecting and freezing for months. It only occurs to me to wonder in hindsight how she got the clues placed and the treasure hidden all while baking and decorating the cake, organizing the party, and keeping up with my brothers and I. While those more elaborate birthday celebrations faded away as I got older, if I was home my mom would always bake her famous chocolate chip vanilla cake with cream cheese frosting (recipe below). If I was away, she sent a card and called. She was never extravagant, more of a simple but elegant woman. But she always acknowledged what a special day my arrival was for both of my parents and how much I meant to them. Like I said, this is the stuff that you would think you could never forget.

But forget she did, first six years ago and increasingly each year since as time for her becomes more and more of a loose construct and words and their meaning elude her. This year I baked her famous cake for my daughter’s birthday and brought her a slice to see if the taste brought back any recognition of all of these wonderful, deeply held memories. She liked the cake, smiled while she ate it, but otherwise was blank. For my birthday, I brought tea and cookies to her care home to celebrate. Because, really, my birthday is about us, maybe even more about her than it is about me if you think about it! She was happy as usual to see me, springing from her chair with delight, her hands swinging dramatically in the air to wave me over, a huge smile across her face. She loved the idea of a party, but I don’t think she really understood the birthday part. She used to break into song, part of her brain holding onto familiar tunes like Happy Birthday better than other things. But she didn’t sing this time. She just enjoyed her cookie and her tea, and I enjoyed her company. Despite all that I have lost of her, I still have that.

I am left wondering time and again as we face into Alzheimer’s ever more deeply, what is life without a memory? I read Atul Gawande’s book Being Mortal: Medicine and What Matters in the End and, while inspired, grateful for this new perspective, and appreciative of the recommendations for aging and dying well, I found myself wondering how one can have a meaningful, purpose-filled life and live life to the fullest until the very end if you can’t remember anything. Who are we without our past? It’s one thing to live in the moment, moment to moment. That’s enlightenment. But isn’t life, ultimately, a collection of memories? Isn’t that what we all aim for, to create wonderful memories? So many of my conversations start with, “Remember when?” What happens when you don’t? Without memories, what does it mean to be alive?

I don’t have any good answers. I just wonder. And I wonder what goes on inside my mom’s head, what she is seeing when she points to things that aren’t there, what she is trying to describe when she can’t find the words, what it feels like to entrust yourself and your well-being completely to another person.

Where is the hope in this? I don’t know. But there is definitely connection. There is some deep, biological recognition of one’s own, no matter what else has departed. And I guess there’s hope – or magic of some sort – in that. And there’s always cake.

Bethie O’s Famous Chocolate Chip Vanilla Cake

1 cup yogurt (plain or vanilla)

1 cup oil

2 cups sugar

3 cups flour

2 heaping teaspoons baking powder

3-4 eggs

1 bag mini chocolate chips

2 teaspoons vanilla

Mix. Bake at 350.

Tube cake – at least 1 hour

Flat cake – 30 – 35 minutes

Cupcakes – 20 – 25 minutes

Cream Cheese Frosting

1 teaspoon vanilla

3 ounces cream cheese

Confectioners sugar

Dab of milk

Mix to taste and consistency. And enjoy!

Just because you carry it well

 

CrossFit, Community, and Alzheimer’s

Like everyone, there are days when I just don’t want to workout. I spent years not getting much exercise at all beyond bouncing with a baby and “lifting” out of the crib. I was consumed with life – or, more accurately, life consumed me. Besides work deadlines that I shoved into limited daycare hours, the frequent illnesses of young children single-handedly and regularly kiboshed any non-parenting endeavor. Having food in the house, ideally and often elusively meant for the preparation of healthy meals, was one of my bigger parenting challenges. Woven within those typical life-as-an-adult constraints, I lived with bouts of intense physical pain thanks to my then newly-diagnosed and erratically behaving Rheumatoid Arthritis. My mother’s diagnosis with Alzheimer’s amid the fray and buzz of a mother’s life with young children galvanized me to pay attention and spend as much time with her as I could squeeze in, but also laid heavily in my lap a palpable and early burden as well as long-enduring grief. Needless to say, I couldn’t find room in a day to exercise. And then the lack of exercise became the new habit, and it didn’t bother me anymore.

Which is sort of true. In hindsight, the truth is that while I had stopped feeling the yucky bloatedness that I used to feel when I hadn’t exercised for a couple of days, quietly and surreptitiously, toxic, emotional poisons that no longer had an outlet built up inside me. I never realized before this period that exercise provided a means to channel and process whatever was on my mind. I’d go for a run, burn out all the jitters, find calm and perspective, regain my center, and go on with my life. Without exercise, there was no way out for the very real and demanding worries I was facing.

During those years, I was scared, sad, and totally overwhelmed. Parenting in the pre-elementary school years can be isolating as is. Adding a couple of chronic diseases and sandwich generation caregiving to the mix engendered an emotional disaster zone (even for a pragmatic, organized realist). There were no clear answers: for parenting or RA or Alzheimers. Both RA and Alzheimer’s have these vague derivations and prognoses. No two patients are exactly alike; there is no timeline or likely outcome for either. Well, I suppose for Alzheimer’s there is a likely outcome, but there is no roadmap, no treatment plan, and definitely no cure. All this to say, it would have been really good for me to have an outlet and some exercise.

Fast forward a couple of years, and I found myself joining CrossFit Launchpad. It turns out that CrossFit is about much more than exercise and nutrition. The real surprise and what keeps me going back is how much CrossFit is about community. I know, a gym (in CrossFit lingo, a “box”) that’s a community? You are thinking, “What the ever-living (sugar-free) Koolaid are you drinking?” Trust me, I never thought I’d hear myself say those words. But, that’s what it is, and it is part of what has helped me to recognize myself and my life again. All of my responsibilities remain the same. And yet I am grounded, clear-eyed, and less likely to spend an entire workout (or an entire day) near tears. That is partially attributable to exercise, but also to my community. For me, place is all about the people. If I feel connected to a person, I feel connected to a place. It’s the people that keep me coming back.

In addition to running workouts, my CrossFit coach, Ronda, organizes outside-the-box events, including monthly baby blanket-making gatherings for the Family Nurturing Center (FNC) in Boston. I mentioned to her that I was hoping to make a large version of the baby blankets for my mom some day when I had time. With their taggie ends and soft texture (almost like a large twiddle muff), I thought the blanket would be wonderfully soothing as my mom becomes more cold-sensitive, tactile and fidgety. Without missing a beat, Ronda said, “Great idea. We’ll make blankets for your mom.” My jaw dropped. It would never have occurred to me to ask. My go-it-alone, do-it-yourself, never-be-vulnerable internal driver flared. Guilt and shame consumed me. I couldn’t possibly have people spend their time doing that for me. No. I declined. She insisted. Eventually I let go. For once, I let go.

And, you know what happened? I had two soft, beautiful blankets for my mom by the end of that day. I look at those blankets and I see both cozy comfort and love. By allowing help, not only was I able to focus on other things that I needed to do for my mom, but it seems I allowed my community to do something to show their love and support. The number of hands involved in creating those blankets grew exponentially by my letting it go, and simultaneously the number of people whose lives touched mine and my mom’s grew as well. Those involved in that blanket-making session told me afterward that they were happy to do it, and that seeing the pictures of my mom wrapped in her new blankets made them feel good. This turned everything I know about asking for help on it’s head – helping me can help you, too?

Life is an incredible teacher. Hope is restored in the most unexpected ways and places. This is universally true, if you are open to seeing it. Personally, here I sit, as fall descends around me, reflecting on this touching moment and the broader lessons it has to teach. The brilliant vermilion, bright orange, deep purple, golden yellow, and amber-hued leaves of yesterday are scattered in mushy, brown, wet clumps on the pavement, a recent storm having wrested them from their branches. All around me life is closing up shop and preparing for the dark, cold, and barren days of winter. And, yet, I wrap my mom in her new, warm blanket and simultaneously I am wrapped in love and hope. Pico Iyer writes, “Autumn poses the question we all have to live with: How to hold on to the things we love even though we know that we and they are dying. How to see the world as it is, yet find light within that truth.”

My truth, this journey, has tested me with its bleak mercilessness. Like the depths of winter, at times it has felt like it would never end. But the light in this truth is all the people who have loved my mom and me along the way, and held us in the light. The smallest gift, the heartfelt gesture, the simple acknowledgement that the journey isn’t yours to walk alone, matter. Genuine connection is the most important aspect of our humanity. Helping other people – and letting other people help you sometimes – are powerful antidotes to lost hope. Help each other. Be kind. Even on the darkest days there is light.

The Warning by Jenny Joseph

When I am an old woman I shall wear purple
With a red hat which doesn’t go, and doesn’t suit me.
And I shall spend my pension on brandy and summer gloves
And satin sandals, and say we’ve no money for butter.
I shall sit down on the pavement when I’m tired
And gobble up samples in shops and press alarm bells
And run my stick along the public railings
And make up for the sobriety of my youth.
I shall go out in my slippers in the rain
And pick flowers in other people’s gardens
And learn to spit.

You can wear terrible shirts and grow more fat
And eat three pounds of sausages at a go
Or only bread and pickle for a week
And hoard pens and pencils and beermats and things in boxes.

But now we must have clothes that keep us dry
And pay our rent and not swear in the street
And set a good example for the children.
We must have friends to dinner and read the papers.

But maybe I ought to practise a little now?
So people who know me are not too shocked and surprised
When suddenly I am old, and start to wear purple.

Purple is the color for Alzheimer’s awareness. Purple also happens to be one of my favorite colors. You have been warned!

Check out related articles below or on my Resources page:

Is Alzheimer’s Diabetes of the Brain?

UVA Brain Discovery Could Block Aging’s Terrible Toll on the Mind

How Biogen Salvaged Alzheimer’s Drug After a Costly Failure

 

One Year Later

A couple of weeks ago, a good friend commented that she couldn’t figure out how I have time for everything I am juggling currently. From trying to keep up with my writing to spreading the word about the MAIA Impact School to keeping things together at work and at home, I am busy with a capital B. This got me thinking – where did the time and head space for all of this come from suddenly? Ostensibly all of my responsibilities are the same, so what changed?

I spent some time reflecting on this question and I’ve come up with a couple thoughts. One factor, surely, is that my kids are older. With greater self-sufficiency on their part, I have a longer leash. The time saved by them being able to apply their own sunscreen, tie their own shoes, or put on their own snowsuits is immeasurable. Well, okay, it’s probably 5 minutes each day, but those are some of the more tedious daily demands of motherhood so these milestones matter.

The term “labor of love” also keeps popping into my head. While all of my current endeavors involve work, time, and sacrifice, they also fill my cup. My life is purpose- and passion-filled, and that’s energizing. I used to have a real problem saying “no” so I devoted a lot of time and energy to activities and jobs that left me feeling depleted – or downright stupid and worthless. I am just slightly more strategic about how I spend my time these days. When time becomes a precious commodity, even the most self-sacrificial person learns to guard it more wisely. While I am still horrible at saying “no,” often lapsing into its almost worse cousin “maybe,” I do appear to finally be learning a modicum of boundary setting. Ahhh, your 40’s are good for something!

Fill Your Cup

All that is meaningful and certainly adds up. However, I also lost my aunt this year, the amazing Fancy Nancy, and that sent me into an emotional morasse for a bit. The start of this calendar year I found myself sluggishly crawling through the days after she passed away, trying to get my head around the idea that this woman who was my guiding light and kindred spirit was suddenly gone. I quite honestly still can’t believe it. But these days when I feel scared or uncertain or sad, I can hear her faint but clear voice whispering, “Go. Live!” I think that she has made me braver and more determined.

And then there’s the fact that we moved our mom into a memory care facility last June. As the anniversary of that absolutely gut-wrenching decision and day came and went, I  marveled at what a difference a year can make. I knew as my mom’s primary and long distance caregiver that I was working hard on her behalf, and I was aware that her well-being took up a huge amount of space in my life, but until she was settled into a care home I had no idea exactly how much.

Initially, the interventions necessary for my mom to maintain a mostly independent life were relatively minimal. Over time, as the course of her Alzheimers progressed, though, I spent more and more time triaging issues: making health care decisions, as well doctor and dentist appointments; ensuring communication about appointment outcomes and necessary follow up; staying on top of prescription medications; acting in an HR capacity hiring, replacing, and advising aides; organizing payroll and the weekly schedule; paying bills; sorting through clothes that no longer fit and paperwork that was piling up in her office; fielding calls from her aides and her friends with questions, observations, or concerns, and then doing the research to determine if what we were seeing was to be expected and what to do about it. That’s just a sample. Countless other little things would come up to turn an otherwise uneventful day into a fire drill.

For a while, it was all worth it. And then last spring after a visit to see her, I got the distinct sensation that we had reached the zone beyond the peak of the bell curve. My efforts to prop up my mom’s faux independence were less and less noticed by her and more and more consuming for me. I spent incredible amounts of time working on my mom’s behalf, but had almost no time to actually spend with her. After some intense reflection, I realized that if she had perspective on the situation, she wouldn’t want me to feel so sad and torn between my life with my young family and my responsibility for her life hundreds of miles away. And with that knowledge, I began to visit, and eventually chose, a care home for her.

I’ll tell you what. That process, culminating in leaving her for her first night there, was utter hell. I literally cried into my dinner of a bowl of ice cream accompanied by a glass of wine the day I moved her in. I then put myself to bed early, like an overtired, weepy child, both missing my mom as I grieved this moment in our lives and feeling overwhelmed by the responsibility for her happiness. Rationally, I know that’s crazy – you can’t make other people happy – but I still wish I could sometimes.

Heschel quote

So here we are one year later. She is in fact perfectly happy. I don’t know that she has had one unhappy day since she moved to memory care. Her life exists in this exact moment. There is no past to dwell on, no ruminating about the future. There is just right now for her, and she seems to be quite amused by it. She knows she is loved, by the staff at her home as well as her family, and I think that’s what she always wanted. She has always been guided by what is in her heart, and that emotional clarity remains.

For me, I am my mom’s daughter again, not her business – heck LIFE – manager. It is one of my greatest joys in this mostly horrible Alzheimer’s journey to have my mom close to me again. She doesn’t know my name, but she knows I am hers (maybe her sister, maybe a friend, but sometimes “her little girl”). She lights up when I walk into the room and trusts me absolutely. We go for walks, and we have lunch. Sometimes I just stop in for 15 minutes to check on her. She comforts me when I cry, not understanding at all that I cry for her, for who she was.

Our mom always wanted us to be fulfilled and happy, and whatever our passions were became hers. She championed our efforts and was our biggest fan – always. One year later, I have achieved more balance and found greater purpose. One year later, I spend less time applying sunscreen to others, and more time with my mom. While I am still my mom’s biggest advocate and primary caregiver, it’s not all-consuming. This unexpected time in my life and space in my mind have allowed in more joy and light. If my mom could understand, I can visualize the smile that would break across her face and how her chest would swell in satisfaction. I am doing the best I can with the cards I’ve been dealt, and playing them to the best of my ability. Just like she and her sister taught me. Go! Live!

What if I fall quote

 

Parting is Such Sweet Sorrow

It would be disingenuous of me not to share how HARD it was for me to go to Guatemala.  That may have been clear from my earlier post that mentions the soul-searching I went through to decide to go in the first place.  I am nothing if not risk averse.  Or from the tears I cried when it was actually time to go to the airport.  It was really HARD to leave – there were so many unknowns and my old friend self-doubt had a lot to say about my decision.

Sure, I’ve been brave before – ostensibly.  I’ve traveled all over the world, I’ve taken jobs in states and countries I had previously never even been to before arriving for work.  But so much of that bravery was born of desperation or an “it can’t be worse than this” attitude, not actual courage.  And so much of it was before having children.  Going to Guatemala, on the other hand, was a choice to do something different when things were going perfectly fine.  And that kind of rocked me.

One of my favorite all time quotes is: “I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived”.  That’s from Henry David Thoreau’s Walden.  It’s a message I picked up decades ago, and it’s one I’ve carried with me since.

In my twenties, I would literally go to the woods, especially my sanctuary around Katahdin in Maine, where I found my people, my place, my footing in this world when I needed it most.  I find life there to be a little less noisy, a little more simple, and the scenery so beautiful that it soothes my busy brain.

As I’ve gotten older and my responsibilities to and for others have expanded, I try to find ways to simplify my life, to front only the essential things, to bring the peace that I find when I am in the woods home with me.  Despite all my family responsibilities, my anxiety, my self-doubt, I don’t want to forget to live.  I want to live authentically and bravely and not, like Thoreau says, from the vantage point of looking back at the end of my days, discover that I had not lived.

And so I choose, daily, to face into the fear.  I get on the plane (heck, I buy the plane tickets!) to Guatemala; I push the publish button on this blog while cowering behind the screen awash in vulnerability; I belay at the rock gym even though, fully trained to belay, my mind still tells me it’s awfully risky; I participate in a triathlon for the first time ever when my Rheumatoid Arthritis is finally in remission and I think “maybe I can still do something like this after all”; I drive my beautiful, vivacious, young and also scared mom to the doctor and hear the Alzheimer’s diagnosis we have suspected but been dreading; I go to the woods with my kids and share with them the joy I’ve found there, though it’s not nearly as simple or quiet with them in tow!  I stretch the boundaries of my comfort zone.  I breath through the self-doubt and the fear and I LIVE.

My life has been the very definition of bittersweet these last several years.  And I am so incredibly grateful for all of it.  Without the fear, how would I find my courage?  Without the bitter, how would I taste the sweet?

Meme zoom in for blog
From Tinybuddha.com, through Finding Joy website

Some days you need a little time to breath

It turns out that setting up a little bloggy-blog takes a bit more time and has a steeper learning curve than maybe would have been expected.  I spent most of my “writing time” yesterday on formatting and figuring out this blog platform situation (oh, yeah, and chaperoning a second grade field trip).  So I am going to take my own advice and step back for a minute and take some time today to breath and catch up.

For today I am posting a few pictures of the beauty that is Guatemala as well as one of my favorite quotes.  Stayed tuned for more on Colegio Impacto/Maia and Guatemala; on community and friendship; on more local stories of hope and courage; on my personal reckoning after a diagnosis with Rheumatoid Arthritis; on my journey in caring for a parent with Alzheimer’s.  But that’s all for another day…

The Guest House by Rumi

This being human is a guest house.
Every morning a new arrival.

Pink flowers
Flowers of Guatemala

A joy, a depression, a meanness,
some momentary awareness comes
As an unexpected visitor.

Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond.

Fisherman La Laguna
Fisherman on Lake Atitlan

 

Day of dead landscape
Day of the Dead, Sumpango