When I volunteered for and walked at the South Sound Walk to End Alzheimer’s this year, I wore a special hat adorned with a photo of my mother. I wanted her to be with me in a way others could see. It was important others knew this was the woman whom I had helped care for after much of her life was spent caring for me. I needed people to know the reason why I still care even with her gone. I had “worn so many hats” over the last eight years as I supported both parents on my mother’s journey with Alzheimer’s and my dad’s successful cancer battle. On the eve of the 2016 walk, I figured why not wear an actual hat to clearly demonstrate why I am who I am today: an Alzheimer’s advocate, someone who wants to share her story and make a difference in the fight against this disease.
For most of my mother’s journey with Alzheimer’s, I was a single mom and middle school English teacher; two rewarding yet demanding roles. Since I had learned I could effectively “switch hats” between the two and even balance both at once, I knew I possessed the ability to don the cap of care partner for my aging folks as well. Now with my mom gone, having stepped away from teaching and having my youngest in college, I wear the hat of an advocate more than any other hat.
Some people can handle tackling this role earlier in the journey. I do suppose I began my work as an advocate when I began sharing pictures and posts on social media in hopes of communicating how one can still find joy in this journey with Alzheimer’s. Now I share much more as I know others can benefit from articles on dementia research, caregiver advice, and support for caregivers; and I follow others on social media who do the same. I believe that many who paid attention to my earlier posts trust that I still share information worthy of their time. And that belief reminds me to continue doing my part rather than just moving on from this disease.
Besides donning my advocacy hat as a Walk to End ALZ captain the last two years, I have also paid more attention to the legislative process that affects Alzheimer’s and related dementia. I plan to write more letters, posts, and tweets to those whose attention we need in this battle in the New Year. I believe I’m still learning exactly how my Alzheimer’s advocacy is going to unfold. I believe my own life journey continues to be altered by my mother’s journey. And I believe there are so many more people like me who make a difference and hopefully more who may just be realizing that they, too, can use their voice.
Someone suggested a while back that I should just move on and live my life. I explained I am living my life. Once Alzheimer’s touches your world, you are forever changed. That is likely true of any incurable disease, but with Alzheimer’s you not only lose your person in the end, you lose them in pieces along the way. Though I learned to find joy in the journey, I wouldn’t wish it on anyone. Just moving on feels too much like giving up and that thought unsettles me.
By donning my Alzheimer’s Advocacy cap I can be a knowledgeable voice to end the surrounding stigma of this disease and garner support for legislative funding and research. I will gladly continue this journey with Alzheimer’s in that manner, honoring my mom’s memory along the way and hopefully helping fewer daughters become daughters of dementia.
Information about the Alzheimer’s Association Washington State Advocacy Day can be found at this link: ALZ WA Advocacy Day There are many resources just a click away on that page but here are some of the ones I see as extremely helpful for those on this journey with Alzheimer’s disease:
A response to the words of T.S. Eliot: “I said to my soul, be still and wait without hope…”
“Be still and wait without hope…”
As Alzheimer’s disease took a stronger hold,
I felt the need to do this.
I could still bring along love in abundance
And let grace hold my other hand.
Constant companions to help carry me through ambiguous loss,
This long goodbye that in reality was so many goodbyes As piece by piece I watched my mom disappear. Hope though? Hope just felt out of place at this point—
An empty, patronizing taunt
After a death sentence had been spoken.
Hope didn’t abandon me completely though.
It patiently waited close by, looking to reconnect.
It whispered to me in the night,
After loss began settling into the corners of my soul,
And I learned how to carry the weight of my grief, I saw that my heart could welcome hope again.
And as I let its lightness back in,
Hope not only brought some peace to my broken heart.
It lit a fire in my soul to do something—
Something that could make a difference for the future.
Hope has refocused me on the urgency to bring change,
Change that could give others and myself more reason to hope— Hope that my kids won’t ever have to
“be still and wait without hope”
Like I did with my mom.
My soul now implores, “Get moving. Give yourself and others a reason to hope.”
October was my favorite time of year
ever since childhood.
Fall showing off
its most charming attributes-
colorful leaves falling, sometimes gathered and pressed
in between the book’s pages,
fragrant apples gathered to make applesauce,
pumpkins, gourds, and calico corn
adorning the table,
a smiling, jointed skeleton taped to the window,
the most exciting part of baseball season,
the anticipation of Friday night football and homecoming fun,
stockpiling of treats and readying of costumes,
the salty crunch of baked pumpkin seeds,
the sweet aroma of pumpkin spice lattes and cinnamon tea.
Now it also means another year since losing my mom to Alzheimer’s,
another year since the mix of dread and anticipation overwhelmed
as we waited for death to come and free her of the disease,
Another year since the picking out of a powder blue casket,
clothes to be buried in, a fitting headstone to visit.
Another year since writing about the lifelong lessons of grace
I was compelled to share at her service.
Another year since selecting the pictures to tell her story, to honor her.
So I find myself doing that thing—
that “busying of self” thing I do
so I don’t find myself rendered immobile with that truth,
that countdown my mind and heart wish they could ignore,
a timeline that my body seems to physically know and respond to
with no consultation needed from my mind.
I busy myself with showing up in places
that are more likely to elicit a smile and laugh
when deep down I feel an ocean of tears beginning to build
just as it did two years ago.
And now knowing so many others who live in this “world of after”
—others who know how to put on
this charade of busy-ness
that is often just a dance away from the truth—
It feels almost like a betrayal to act this way-
to make it look as though fall were still my favorite season,
to imply that I have so much to smile about,
to be less than honest.
Maybe there is more to the truth of my grief now-
Smiling through the tears is a little easier this year.
I have learned that “my way” is the best way for me-
no matter what it looks like,
And my way doesn’t owe anyone anything
because it’s my grief alone to carry.
Approaching this two year mark,
beginning the October countdown,
I know I am stronger this year than I was last year—
from not constantly running from my sorrow, my reality.
Speaking its truth to other loved ones and ultimately to myself
has helped me accept the state of my broken heart.
So maybe my actions and attitude, seeped now in fall festivities
are acts and signs of self-kindness rather than a charade—
not a dance away from honesty but rather new steps in a dance with truth.
Maybe they bring balance to the solitude of my empty-nester nights,
Maybe I just need to cut myself some slack and realize
I am exactly where I need to be.
I need to trust that I can and I will choose
what’s right for me in each moment as it comes.
Yes, I will grant myself some grace.
Even in—no especially in—October.
It was the afternoon of September 13, 2015, and I stood with others near the loading and unloading area of the train station. A man standing nearby started up a conversation by asking if I was also awaiting the next train arrival. I explained I was actually waiting for the current train’s departure and added how my dear friend had come up for the weekend to join me in the South Sound Walk to End Alzheimer’s event at UPS. Attired in my purple Walk to End Alzheimer’s T-shirt, he took a good look at it and then chuckled slightly before making a comment I never anticipated. “So is that something where people are just walking around and around and around in circles until they forget why they’re walking and then they forget that they even forgot?!” A bigger chuckle from him now that he was done and so pleased with his creative comic moment. I bit my lip and looked down for a moment. It felt like time froze as I pondered how to respond. Had he really just said that? Why would someone make a joke about this deadly disease? Do people make jokes about cancer and Relay for Life? Did it even cross his mind that a person might do this after suffering a loss? Lord, give me grace. Help me respond, Mom.
I took a deep breath, looked up, and responded, “No, that’s not really how this event works. Many of those walking have actually lost someone to the disease and those who have it and are walking—if they still can, for you see it doesn’t just affect memory but how the brain works with every single part of the body eventually—well, they have caregivers with them as they walk, keeping a close watch on them at all times. You know, there are actually a lot of people who feel this is a worthy cause to support. In fact the whole group that walked in Tacoma raised over $105,000 at this point and it will likely be more as donations continue to be added in the next few weeks as well. My small team of four even raised over $1500.” He hmmphed and then when he asked me if I participated in it because it was a “corporate thing,” a choice made to make my business look good, I decided to let him know just how personal this choice to walk was for me. I looked him in the eye with tears forming in mine and explained how my mom had had this disease and next month would be the first anniversary of her death due to complications from Alzheimer’s. He sighed now, looking quite embarrassed by his joke, understanding the unintended slight he had made. I had spoken softly though in my response, and continued that way, no condemnation in my tone, adding a few basic facts about Alzheimer’s for him to ponder along with my personal connection. The statistics tip of the iceberg really—but it was an effective response nonetheless.
He looked down for a moment and then tried to look up and meet my gaze. “You don’t really know about it…um…or…want to know about it…until, well…until maybe you’re going through it, huh?” stammered the man finally shaking off the guilt of embarrassment and looking me in the eyes again.
“Well, I guess that’s true sometimes, for some people,” I slowly responded trying not to lose composure as the emotional impact of the day was starting to weigh on me. “But thankfully the Alzheimer’s Association and many of us affected by this disease are trying to change that by creating awareness with events like these.”
His face softened and he replied for the first time with what I felt was true sincerity and a much larger dash of humanity in his tone, “Well, bless you then. Bless you.”
I smiled, turned to wave my friend off as his train finally departed, and then walked to my car feeling I’d handled that moment as well as I could have but wondered how many more just do not understand. Yes, I had made one man at a train station more aware of Alzheimer’s by just attaching a personal face to a disease that—like he pointed out—nobody really wanted to hear about. The very reason it is essential they do hear about it. Not for the first time I was reminded that Alzheimer’s awareness begins with those of us who have walked this journey. I know so many folks are tired from dealing with Alzheimer’s, the long goodbye taking such a toll on us mentally, emotionally, and physically, but no matter what stage we are in with our loved ones or ourselves, our stories need to be shared at some point even if just with one person at a time. The stigma surrounding this disease needs to be undone. And as that happens, maybe, just maybe, the healing of hearts broken from this disease will begin as well. This is a big reason why I do this walk and why I tell my story—my mom’s story.
Time was most definitely running out.
We knew it. The diagnosis made it clear.
A death sentence.
No weapons to face the battle.
(Could we even call it that?)
Weren’t we just death spectators now?
Just watching and waiting
for death to come.
The idea of time being “a creek heading east”
is quite poetic
but honestly this felt more like traveling
“up sh*t creek without a paddle.”
We knew the course was set—death up ahead,
around the bend, over the falls.
We just didn’t know how quickly
or how slowly it would come.
Didn’t know how much it would take of her
before dealing its final blow.
They call it “the long goodbye”
for a good reason.
At first it was slow in coming
but eventually became relentless.
More and more of Mom
disappeared between each visit.
I felt blessed to live close by,
to be able to visit as often as possible.
And during these visits I realized something.
No matter what happened
she still gave such loving hugs—
even more abundantly than before.
She might not be able to recall
a name or the full connection,
but her heart recognized where love existed.
Her brain was dying;
her heart was not.
We now had a weapon to deploy
and her lead to follow.
Time for us to fire away with love,
unconditional and compassionate love.
It was the only way we could hold onto hope,
hope we still might have a part of her
with us at the end of this journey.
That meant letting go of any expectations of
how or who she had once been
before time began to run out.
Letting go of anger and sadness in her presence.
Now there was only time
Alzheimer’s took my mom’s intellect, her logic and rationale,
her body’s ability to function, and so much of her memory.
But because we followed her lead,
Because we kept love alive and growing as time was running out,
an abundance of grace flowed.
We looked past our needs—only made sure hers were met.
Made sure love guided us, served as our compass for this journey,
And because of that, even after she suffered a massive stroke,
a domino effect from the symptoms of a dying brain,
We still had love at the very end.
Time ran out—but not love.
With Mother’s Day approaching…
What I wouldn’t give for some final moments to talk
with this loving woman who taught me so much
about life and grace.
How I wish I could pinpoint our last real conversation
as mother and daughter and replay it in my mind.
But wishing doesn’t help,
doesn’t change the reality of the creek’s destination.
So I must cherish ALL the time I had before it ran out.
And conversations of love through connected eyes,
will last in my heart
Love and light to all who are missing their moms Mother’s Day approaches.
Karen Johnson Marez 05.01.16
If I could spend time anywhere to help me along this journey in life, this living with grief, I would spend most of my time in my mom’s garden, enjoying the fragrant, artistic blossoms,musical chirps and twitters, and even the helpful spiders glistening in their webs while the busy soft bees perform their duties to keep life alive there.
My mom was a masterful gardener. She designed and created this little world, this oasis of nature from dirt and weeds and rocks- so many it seemed as if they grew more than the weeds at first. She shaped the land into a refuge and from that refuge came the most beautiful blooms, fragrant blooms that were shared with so many. From that garden, she created gardens at the local subsidized day care so the little ones would know nature, could frolic in flowers, could reach down for a sniff of a world so sweet—something her granddaughter, my daughter had done in her yard so many times.
Friends and family all around have patches of Mom in their gardens. Strangers all over have bits of it, too, as she would prepare 100 or more small pots to sell at the annual Garden Club sale—the money raised going to local charities. It was her way of spreading into the world what she loved most about Mother Nature. She wanted everyone to experience it. Her garden was her place, her sanctuary. In rain or sunshine, she was there.
As the Alzheimer’s took hold, however, unwanted change entered the garden sanctuary. Mom’s sense of smell became lost- such a cruel twist of fate for a gardener. I think she would have rather gone blind. So many times while trying to leave at the end of a visit, Mom would bring me a freshly picked bloom to just take one more sniff. The fragrant scents so delighted her soul. As the Alzheimer’s continued its progression, anger and frustration became a part of gardening as she realized she couldn’t remember the names of all of her plants. Her peaceful sanctuary became a place that reminded her that something was wrong with her. I would tell her we could just rename them the way we wanted to now. That helped sometimes. Blue campanula rotundifolia simply became blue balloon bells.
Then came more of the physical ailments. Her brain ceased to function with her bladder anymore and Dad would find her rushing into the house after an accident looking mortified and ashamed. The garden that had been only a happy place, a place of growth, soon became an overwhelming space for her. As the disease progressed even further, a silver lining was found: she forgot to be angry about the things she didn’t know and just started to live more in the moment. We helped with a lot of the larger garden and she ended up creating a small patch garden where she could manage a tiny oasis for some small garden gnomes.
Oh, how good it was to see her smile around the garden again. It was close to the bird feeder and she would whistle with the birds again or sing them songs she still remembered.
About half a year later, we realized how much she was avoiding the garden again. Even the little gnome sanctuary had been neglected. It was all just too overwhelming for her brain to manage. We had also dealt with moments of her wanting to leave the house at odd hours—not seeming to know where she was or who she was with or what time of day it really was, panic and confusion setting the course. One time Dad called me on the phone in the wee hours of the morning in a panic and asked me to talk with her. I was thankful she knew my voice. I was able to calm her but she still seemed worried about who Dad was. I think in her mind her husband was much younger than 78. Luckily he was able to calm her enough to sit and listen to him read Psalms from the Bible. She knew his voice deep down and that little bit of trust started to calm her as did the familiar words. I think this was the only time she was unsure of his identity.
For some reason this sort of behavior only seemed to happen after midnight and, after it occurred during a family trip at the ocean, Dad realized we’d reached a point where there was no guarantee she wouldn’t go out the front door at home at some odd hour while he slept. And he had to try and get sleep. Living with someone at this stage of Alzheimer’s can make a 24 hour day seem more like 36 hours. Dad was extremely exhausted from being her full time caregiver all day and night while also recovering from the side effects of a previous battle round with his non-Hodgkin’s Lymphoma. He had such a huge loving heart for his bride—as he often called my mom, but boy did he have a lot on his plate. I went over to help as much as I could, but as I was teaching during the school year, there were many daytime hours it was just the two of them. Soon after the ocean incident occurred, a decision was made that would help alleviate the stress of Dad’s caregiving while also providing Mom with what was best for her.
We moved Mom into a wonderful, compassionate memory care facility just a twelve minute drive from their place and we witnessed a social re-blossoming of her soul. She and Dad could visit often and none of it was spent arguing about her wanting to hide things and rearrange the furniture and the pictures on the wall. Mom loved talking with everyone there, even the gals that did the laundry knew her. She helped with activities whenever she wanted to, played the piano again, and we were overjoyed to learn that they had small gardens she could enjoy—for awhile at least. Meanwhile the garden at home continued through yet another year of neglect as we focused our time on going to visit her in her new home. I vowed to battle the weeds when I had a chance, deep down knowing that would likely come only after she had passed.
Now that Mom is gone, Dad and I have tried to reclaim her masterpiece. We have poured over her gardening journals. I have lamented over and over not asking and learning more from her when I had the chance, before the names fell away, before it brought anger. The garden has suffered some losses— much like us. The little garden gnome I gave her for her last birthday at home in 2013 sits looking quite weathered behind an expanse of weeds. The day I gave her this little guy, she reopened the gift bag several times as she couldn’t remember having done so. One of the silver lining moments— seeing her smile and giggle about the cuteness of gnomes more than once. Such a bright, colorful memory. Such a contrast to how he looks now but then his current state mirrors my own. Trying to display a small grin when the world is looking, keeping a glimmer of hope shining in my eye while feeling like I’m stuck in the weeds of grief.
Slowly though, with a determined spirit to find solitude and feel that oneness with creation that Mom loved, we head out to tend the garden, pull the weeds, gather up the fallen sticks and pine cones. We see the blooms begin to open. Dad faithfully feeds the birds and we are hear them sing their love songs. We are finding solace as we work to reclaim her oasis. We’re a team. My sister helps whenever she is in town for a visit, and while my brother mainly focuses on the lawn he also helps manage the watering and has now learned to dead head the rhododendrons. Spending time with Dad, who loves the garden so much because it is like a piece of her heart and soul, helps remind us all a part of her still lives here.
His 81-yr-old somewhat wobbly legs often take him in to warm up sooner than me, and he sometimes calls out to me from the back door with her nickname. “Hey, Mama Bear, you coming in soon?” Habits he loved. I just go along with it without correction and answer, “Sure am. I’ll be in soon.” And then go back to gardening for a while longer just like Mom would. Sometimes it gives me an extra moment to talk to Mom out loud while in her garden. I do it in my head often enough. I ask her to show me how to do different gardening tasks. Ask her if I am pruning correctly while always wishing I had listened better or had taken notes. She was the one who showed me how to do so much but I didn’t always pay attention, mind on the job or the kids…and I just always thought she would be there to ask again. She was not just my mother, she was one of my very best friends and I miss her so.
Somehow spending time in her garden keeps the larger ocean waves of grief, that deep well of sorrow, from taking over as much. The garden has become
my own sanctuary. And when the day is done and a small stream of tears flows down my cheeks on the drive home, I think of how we are now tending that garden paradise, how happy it makes my dad, and I smile through the tears, forever grateful for the gift of her garden that helps to sustain me with its beauty and grace.
A Poem Honoring My Mom on What Would’ve Been Her 81st Birthday
Written March 14, 2016
Mom, you would have been 81 today. But now you are endless.
Time holds no constraints on you. You are free as eternity.
Years must feel like seconds to you
if time can even be felt where you are. (If time can even be felt where you are.)
So many memories of you crowd my mind this past week
and especially today.
So many glimpses of things that reach
into our past stir my heart…always.
Your last birthday here was in memory care at the Weatherly Inn.
You didn’t even know why the day was special.
I visited you that evening and brought you a lovely blue heart pendant.
Blue for you, always, and a heart for all the love
Alzheimer’s could not take away.
But the disease took that heart.
It disappeared like so many trinkets I’d brought you
just to see your smile.
And along with its disappearance —
the memory of me bringing it.
Gone within minutes of having received it.
But, oh, what a gift it was to me when you told any CNA who walked by
“This is my daughter!” Your face beaming with love.
You didn’t know why I was there except that I was your daughter.
And you were my mother.
There was love.
There is love.
Love was and is all that matters.
I cried on the drive home — as I often did — and wondered
how many more birthdays we would get to celebrate with you.
I truly didn’t think that one would be the last.
I remember the one before it, while you still lived at home,
and how you opened and reopened the gift bag of garden gnomes,
little sentinels who would end up guarding your new patch garden
because the masterpiece one seemed to have grown too large
for your mind —the master gardener’s mind —to manage.
Now that you’re gone I try to celebrate you
I look for you in big and small ways every day.
I try to see how you still are here in this place that I live.
You are so clearly the “Blue skies smiling at me…”
and so many songs of old.
You are there when I hear Louis sing “Hello Dolly”
and “Dream a Little Dream.”
You are there when Andy or Bobby sing “More”
and whenever Frank sings —
especially anything about the moon.
You are “Sentimental Journey” and “Rhapsody in Blue.”
So many of these I hear during my visits with Dad
who misses you, his Mama Bear, so.
The picture of his bride
hangs at his side near the kitchen table.
He sings and hums in the garden now — bringing you along.
You are my sunshine…still.
I will forever cherish the last time we sang that together,
two days before your stroke.
It would be the last song I heard you sing.
It would be the song we’d all sing back to you,
your three granddaughters gathered by your hospital bed.
It is the phrase that now tugs on all our hearts.
I’m so grateful for the gift of music with you.
How you bring me songs now at just the right moment.
How present you are in the moments I hear Kate sing.
How you nurtured her with music at such a young age!
She sang to you so much in the end.
Giving back the gift you gave to her with such devotion.
My daughter Kate, Mom’s oldest granddaughter, helped us out on Mom’s move-in day to her memory care center, the Weatherly Inn. Mom was beaming from all the social interaction.
You are the first person I think of when I ponder how tall Trey has grown.
If you could have given your grandson blue ribbons
or gold stars for towering a foot over you,
I’m sure you would have.
You gave hugs and beaming smiles.
You asked him endlessly how tall he was now.
Might have been once every two or three minutes.
I know his height reminded you of your dear “little” brothers—
Miles and David — younger in your mind once again at that time.
Your feelings of love and pride in Trey matched your feelings for them.
How you loved your puzzle time visits with your grandson that last year.
Oh, puzzles. They will always be you to me.
You were, you are, puzzles big and small.
Some puzzles with pieces shaped to fit —
even if they didn’t start that way. And, of course,
you didn’t know who would do such a thing.
You are piano melodies and favorite hymns.
You are polished rocks and beautiful flowers —
flowers that still grow in your garden
and in so many gardens of those you knew.
You are sandbakkel cookies and raspberry jam.
You are a cozy, old sweater and a cup of tea,
steam rising from a pretty flowered mug.
You are blue — oh, so much blue.
Bright blue beads and shirts and coats and hats,
Shimmering blue crystal vases awaiting blossoms of spring.
Even a sky blue Volare station wagon with wood-paneled sides
that could tell so many tales of trips you designed with such love.
You are the sweet trill and chirp of the backyard birds
enjoying the masterpiece garden sanctuary created
from so many years of your love and hard work.
You are the happy, busy buzz of bees enjoying your garden,
and the dew glistening on the garden spider’s web
while she awaits “bad bugs” to eat.
You are the reason I love dogs,
helping me to rise above my early childhood fear
and learn lessons of furry, unconditional love.
Love that sustains me so often now.
You are beautiful butterflies reminding me of new life
and sweet blue forget-me-nots reminding me to honor the past.
You are such a huge part of the love and grace and hope and peace
that keeps teaching me the most important lessons in life
even when you’re seemingly gone.
You may be singing heavenly praises among the angels now,
but I still hear your sweet voice in my heart every day.
Mom, you would have been 81 today. But now you are endless.