Podcast: Exploring New Worlds Without My Mom

As my mom’s Alzheimer’s progresses, and I face the loneliness of our visits, I have plenty of time to reflect on lessons she’s taught me about acceptance, and the value of staying present and mindful with her during these transformative moments. This episode called "Life Among the Tulips: Exploring New Worlds Without My Mom" from my podcast, Let the Verse Flow, is about acceptance, resilience, and gratitude as my mom and I say a long goodbye. It is a gentle lesson on mindful approaches to exploring new worlds without someone you love.

I offer this blend of storytelling, spoken word poetry, and music to help anyone who needs comfort as they try to navigate a hopeful acceptance of hard times.

Music Credit: Thoughts Of You by Renderings; Slide by GEMM; Tai Chi Evenings by Sam Barsh; Pyaar Kee Seemaen by Cast of Characters; licensed through Soundstripe.

Transcript

There are moments on Sunday mornings when I hate each and every step.

Wake up at 6am to head to the suburbs,

Dragging alone with feelings.

And then to add insult to injury,

I have to walk along a sterile path to find you.

Walking around manicured tulip beds and deserted streets.

No one goes out this early,

But here I am,

Trekking to see you.

Cause it's you that makes me complete,

And this is where we've come to.

The bus,

The bus,

The train,

The walk,

Then you.

It's a long way to go on a lonely Sunday morning,

And all the while so sad.

I hold back tears among the tulips,

And wonder all the same why someone planted them like army soldiers when all they want is freedom.

Can't tulips bend and meander along an uneven path?

Can't they have some room to breathe?

Can't each one have its own place of magic,

Like gems arrayed,

Like jewels?

But alas,

Even tulips must follow rules.

There are moments on Sunday mornings when there's a pit in my stomach,

As I wonder how you are and where you've gone on this particular day.

Will you be sleepy?

Will you feel cold?

Will your glasses go missing?

Will your attention hold?

Will you smile the same smile that I've known for so long,

Or close like a clam to shut down for a while?

I don't like how it smells here,

Even though the smell is sweet.

It's not how we smell.

It's not our place.

It's oddly too cold.

But this is where the road has led us,

And these are the moments that we have.

Of course the tulips know what really bothers me,

The thought that our wild and odd little ways are gone,

Replaced by order signifying nothing.

We liked it messy and ragged.

We talked the same language we shared,

A past.

And now all we have are short sayings,

Routines,

And small rigid garden paths.

How can this life contain our love,

Our nature,

Our dreams unfurled?

How can I hold on to the special way you impacted the world?

How can I explain to the tulips that they can grow a different way,

Take another path,

One that you showed me?

How do I do that alone,

Because you can't remember and I can't let it be,

A lonesome messenger living among the tulips that long to be free?

Today I'm talking about acceptance,

Especially accepting shifting tides and unsettling changes that you don't want to accept.

Today is about accepting my mother's progressive decline into the next stages of Alzheimer's and the fears that I have about the day when we'll have to say goodbye.

Yes,

This show is about a hard topic,

One that many of us,

Myself included,

Would rather forget.

But acceptance is an important action that we need to come to terms with.

It's a sign of my growth that I'm even able to talk about accepting the loss of my mother.

It's painful to accept these changes my mom is going through,

But being present for even this last stage of our living relationship is an important lesson in what it means to really live your life.

Be present for all of it,

The good,

The bad,

And the ugly.

Being present for acceptance of this new phase in my life is about embracing life on its terms and wringing out each and every drop of pleasure that I can get.

Pleasure through presence,

And pleasure through truth-seeking.

Let's talk about acceptance.

My mother loves tulips,

One of her springtime favorites.

So when I saw them lined up in neat,

Rather sterile little rows across the street from a suburban train station,

I thought of her,

And really the messy way she would have preferred to see them.

The natural way,

Just growing as they please.

The long trip to see my mom gives me so much time to think,

Too much time really,

Before I get to see her in the assisted living facility she now calls home.

I wonder sometimes who will know how she felt about tulips,

Who besides me will know how she loved natural beauty over manufactured beauty,

Who will know how she looked at trees with awe and took in the world.

Only me and a few close family members,

And now those of you listening,

But it's hard to think of my mom's remarkableness being contained by the memories of only a few people.

And yet I'm so glad I'm one of the people who's been a part of those memories.

It's bittersweet.

As a child,

I thought my mom was the only artist in our house.

Her drawings and paintings were beautifully odd,

With abstraction and color and attention to light and shadow.

She never thought she had much talent,

I think in part because she received zero encouragement about her artistic talents while growing up.

I always felt like she was the wild child in her family and the magical thinker.

They didn't know how to handle her big dreams and artistic ways,

And they tried to clip her wings with lack of attention.

It worked for a while,

But it didn't work long term.

She began to draw and paint more in her forties,

Producing her most beautiful work in midlife.

I on the other hand was a rather reactionary kid who craved order.

My early childhood was chaotic and I think what I most wanted was peace and calm.

Even at a young age,

I remember lots of solitary play,

Building with my Lincoln logs or thinking up words for my Mad Libs.

I loved Mad Libs,

My first experience with word play.

I also had a vivid imagination with many imaginary friends.

And yes,

I talked to my imaginary friends.

Heck,

I was an only child who craved conversation and in hindsight,

Some sort of safe forms of intrigue.

I'd make up stories and then create imaginary characters with intricate dialogue and see what drama I could spin up.

And in my teen years,

I wrote for hours in my journals while listening to music.

But even,

You know,

Given those early years of imagination kind of gone wild,

I didn't think of myself as creative until high school when I was introduced to the world of Shakespeare in my lit class.

Mr.

Longo was a brilliant English teacher.

He had us sit in a circle and that wasn't done much back then.

You know,

You usually sat in rows but he wanted us to see each other and we would talk,

Really just talk about our thoughts about Shakespeare's plays.

I loved the forum he created because I thought my favorite Shakespeare characters were like,

I don't know,

Like wild turkeys run amuck,

Free,

Irreverent,

Uncaged,

Which is a wonderful feeling to have when you're a teenager.

And I loved his sense of freedom,

Which I thought he demonstrated through,

You know,

This really brilliant and fanciful writing that you could get lost in.

And I'd speak often in lit class.

I think the other kids probably hated me,

But I didn't care.

And Professor Longo seemed to think I had something interesting to say and that's all I cared about.

But at my high school graduation,

I was given the award for creative writing and gifted a book of Sylvia Plath's poems.

I still have this book and I still love Plath's poetry.

As my writing developed,

I began to see my artistic side,

But I still didn't call myself an artist.

Somehow that title was reserved for painters and poets and dancers,

Not business writers,

Not teenage poets,

You know,

Not dancers who danced around in their rooms or in clubs.

It's strange how we think when we're young,

But during this time,

My mom was my biggest cheerleader.

And by that,

I don't mean that she read everything I wrote and flowered me with like compliments.

It was more that she supported the decisions I made and believed in my talent as a writer.

If I said I wanted to write a book,

She said I had one in me.

If I said I wanted to go to graduate school to write documentary scripts and treatments,

She said I should look into it.

And looking back on it,

I don't think she believed I would be successful in every pursuit,

But she supported my passion and desire to try new things.

She accepted my need to explore and venture into different ways of writing.

And she accepted my aspirations without too much judgment.

I'm sure she did have some internal judgments about whether I'd have success in this area or that,

But she didn't share them with me much.

She allowed me to have choice and to follow pathways even when I wasn't sure where they were leading.

She trusted me and she trusted in the way my life would unfold.

I always admired that sense of acceptance,

But it did feel foreign to me.

I did venture out.

It's my way.

I typically like leap into action sometimes before I know what the heck I'm getting into,

But I don't always accept things the way they are.

It's hard for me.

I'm kind of like a,

Like a bulldog.

I get into something and I really dig in.

I don't know why I'm talking about dogs,

But because I don't have one,

But I imagine it's like the difference between a bulldog,

Maybe a miniature terrier and a Labrador.

The bulldog,

That's me,

Will pounce around and strong arm his way through while the miniature terrier may like bark incessantly while standing still and not doing much of anything.

And the Labrador will take it all in and just seem to accept the current situation very calmly.

My mom was the Labrador and I was the bulldog.

I'm not sure where this dog analogy came from,

But let's go with it for a minute.

So the poor miniature terrier is out of the picture for right now.

But my point is that sometimes you have to let go of your bulldog persona and your typical way of doing things because life has other plans for you,

Your persona,

Your will,

Your expectations and your agenda can be uprooted and you have to make room to see life as it really is.

And that reckoning time has come for me.

And I can't strong arm my way through my mom's advancing dementia.

I can't fight the two-hour commute to the deserted suburbs to see her.

I can't fight the million times that people ask me if she still remembers me.

Yes,

She does,

But she might not in the future.

And who wants to think about that?

I can't fight that I'm here in New York City in the neighborhood that we shared,

But it feels hollow and cold without her nearby.

I can't fight any of that if I want to find the calm and peace that I need in my life in order to make some sense out of this very sad and frustrating time in my life.

And that little girl who craved calm and peace is still very much alive.

So where does that leave me?

If I can't fight things,

I've at least created a workable situation for my mom.

Her life in an assisted living facility is as good as it gets,

A safe,

Loving environment where she gets the care she needs.

I can't make it more workable than that.

So my only choice for sanity now is acceptance.

This bulldog is sort of out of options.

And strangely,

Being out of options is a really good thing for this stage of my life.

It may be very uncomfortable.

It is,

It's very uncomfortable,

But it's sort of right,

I think,

In showing me a new side of life that I need to learn to deal with.

Rather than bulldogging my way through the next chapter of my life,

I think I need to become a mixed breed,

Bring some of that Labrador spirit and energy into my life.

All roads point to acceptance for taking steps in that direction.

And I think my age has something to do with this.

I have finally realized that I don't run the show.

I mean,

Really realized it,

That everything changes.

That's impermanence.

And that my goal should be to adapt when needed,

To temper the bulldog and learn when to coast with acceptance.

So my mom modeled acceptance for me,

But I'm just now getting it,

Just a little bit of it right now.

It's typical.

And what do I have to accept?

It's really sobering.

I have to accept that her memory of our shared past is gone.

It appears to be like a felt sense that makes her smile sometimes,

But she can't actively access it or talk about it.

I have to accept that her expressive language is severely disrupted by the damage done to the language centers of her brain from all the strokes she had.

And even when she tries to tell me something,

She can't,

And she's aware that she can't find the words and they don't come out right.

And that frustration has made her sometimes just shut down.

And I understand that.

I have to accept that she sleeps poorly at night and maybe will be exhausted during the day when I visit.

And then there are harder things to accept,

Too,

Like the fact that we don't hug and kiss anymore,

Not the way we used to,

That I don't hear her say she loves me much anymore.

And sometimes she looks at my name badge to check for my name and calls me by my daughter's name by mistake sometimes.

I have to accept that everyone who asks about her wants to know if she still remembers me,

As if I need a reminder that she may not in the future.

I also have to accept that she has recently talked about dying,

And on some level she may be accepting that fate.

She doesn't say much,

But on one recent day she talked about dying,

Just sort of came out.

So I have big acceptance work to do here.

And one of the truest things I've heard about grief is that it becomes a companion to you.

It doesn't go away,

It sort of becomes part of the fabric of your life.

It may tuck itself in and disappear for a bit,

But it always comes back.

And sometimes really unexpectedly.

Grief isn't long for the ride during this period of learning to accept my mom's condition.

That longing for the way things were,

The sense that so much has been lost through the loss of her active participation in the world,

It can really just feel heartbreaking.

And so acceptance is key.

If the grief is going to stay around,

Then acceptance has to be its twin cousin.

Otherwise life is miserable and so sad.

Here's a poem I wrote on accepting my mom's current state of affairs.

This poem is called Lost Along the Way.

I've been trying to tell you something,

But you just look away and with a face that tells me nothing,

Because there's nothing more to say.

It seems your smile is leaving and all that they can say,

This is how it goes.

She slowly lost along the way.

I've been asking you questions,

Even though I know I shouldn't,

Because questions are hard.

When we no longer share a past,

Nothing ever lasts.

You can't remember is all you can say.

As you lose a thousand memories along the darkening way,

Nothing ever lasts is all they can say.

I've been brushing your hair and massaging your hands because touching you reminds me of what we still have.

And smelling you reminds me of all that we've been.

We fought wars,

Advanced armies to get to this place.

But some days you're gone,

No map,

No note,

No trace.

So I'm told I'll have to be your memory,

I'll have to be your guide.

And of course I'm there,

Your plus one,

Till the breath leaves,

We die.

But I'd rather be your daughter,

Living with a blind eye,

To the torture of slowly watching as you lose pieces of your mind.

But alas,

This is how it goes,

I'm told.

A shell of who I remember,

You've locked away familiar pieces.

And soon I fear you won't know me,

The clarity decreases.

I'll accept it,

Yes I have to.

But I dream of your warm ways,

The strength behind your eyes.

And all the times we shared,

When you were who you were,

And I was who I was.

We are different now,

I have a new companion,

I'm told her name is acceptance.

I wish we'd never met,

I wish she had a different name,

Cause she doesn't hug me like you do.

She doesn't shelter me from flames.

But thrust me out there for the world to see,

When all I want to do is fight for our dreams.

In my situation,

Acceptance is strongly related to resilience.

How resilient can I be as I face these difficult feelings,

You know,

And make difficult decisions and live with the current situation.

And resilience is the ability to cope with and bounce back from difficult situations.

The problem is in this case,

The place I'm bouncing back to is completely new territory for me.

It's a landscape that I don't understand or know,

A world where my mom isn't in my life.

And I'm utterly unprepared to bounce back from that.

So I have to make friends with it,

I have to get to know this new world and ease into it until it becomes a little more familiar.

You know,

It's like I'm exploring another planet,

Noting where I'll source my water or grow my food and find companionship.

My world,

Especially on Sundays,

Feels like a desolate other world.

It's like I'm Mark Watney.

Remember Matt Damon's character in the movie The Martian?

He had to grow his own potatoes for food and make water from like rocket fuel and find companionship through his like lone interaction with this computer diary and the disco music left behind by a teammate.

That's me.

I have to find and build a life without my mother while trying to hold on to the warm glow of love and support and compassion she showered over me.

And if I flip this and realize that the reason this time is so difficult is because the times before were so special,

If I recognize that I was loved,

I was supported,

I was handled with compassion,

I realize how rich my life really is.

I realize how much I have been given.

And that is how you turn your life story around,

Especially the precious moments in your life story into a resilience building kind of structure.

You recognize that your life has a beautiful infrastructure,

Rich with meaning and passion and joy.

And just like grief,

You carry that amazing sort of tapestry and framework with you.

You move through gratitude to build resilience.

There are so many people who have much less than I do.

So many people never had a mother like mine.

So many people suffer each day.

And so my job is to remember the whole story that I had my loving mother for so long and now I won't.

I have a choice here in how I'm moving forward.

I can stay in the sadness and regret or I can take my mom's model of acceptance and pair it with my bulldog resilience and move through gratitude to a new understanding.

And I'm choosing that for myself.

My poetry tells the story of the early stages of that journey,

But the journey isn't over.

In some ways,

It's just beginning.

I've had 59 years of my mom's love,

Imperfectly expressed right now,

But still there.

And it will take time to build a new way of living in her absence with solely this sort of internal map of her love for comfort that lives inside me.

God,

I have enough imagination to fill in the gaps.

The task now is for this bulldog to reinterpret all the love and compassion she gifted me into an internal map and spirit that lives up to her depth of compassion and acceptance.

In short,

I have to imagine a new world invented by my favorite person and translated by her only daughter.

I know I've rambled on today about acceptance and resilience and gratitude,

But I hope this kind of milkshake of thoughts and reactions is meaningful to you.

If you are struggling to accept your current situation,

There are lists on the internet of strategies you can consult and some tell you to have a gentle awareness of your feelings,

To be mindful and let whatever emotions come to the surface just exist.

Other strategies say to focus on what you can change,

To gain some sense of control over your situation or find healthy coping strategies,

Maybe exercise or art making or connecting with nature.

And we've explored these strategies in the podcast before,

But for today,

I want you to take notice not just of the struggle,

The hard pill you are having to accept,

But to take a broader view and think about where your resilience lies.

Do you feel better when you keep busy?

Do you find strength by getting into creative flow?

Do you learn acceptance by watching your kids or an elder you respect kind of navigate challenges?

Do you feel the other side of struggle,

The gratitude for what comes easily and the things that are working in your life?

I guess I just want you to reflect on your ability to accept your life as it is and recognize the ways the good can fortify you to handle the not so good.

Here are some journal prompts to reflect on accepting life as it is.

You can write in response to these questions or just think about them.

Let them hold space alongside your grief or struggle to accept something in your life.

The first prompt,

What would a loved one or elder tell me to do with the struggle and hard times I am feeling right now?

And two,

Am I able to put what's not working in my life in perspective by comparing it to what is working?

What am I grateful for in this difficult moment?

And three,

How am I showing up for myself and perhaps those I love during this difficult time?

How can I recognize and celebrate my resilience?

Our struggles may be hard to accept.

That seems universal to me.

How do we integrate what is good into our current sadness or frustration to take the edge off and move forward?

We feel it all first.

We sit with our emotions.

We try to accept them.

And then we pull out to see the bigger picture and to remember that we are still alive.

We have another day to experience what this life can offer.

And my hope is that it offers you sweet songs,

Poetry,

Companionship,

Imagination,

Art,

And the remembrance of a loved one's embrace.

May those beautiful elements of life transform your pain,

Returning you to the brighter side of the beat.

Reviews

Thank you Jill! Your words brought meaning to my feelings of losing my mom to dementia...and although I had a much different relationship with my mother...so much rang true for me. I appreciate the raw pain I felt from losing my mom, once to abandonment, and the other through her death. Your words truly penetrated my ❤️!

I loved this offering, Jill. I wonder if your mom still paints or draws. I wonder if she can communicate and express herself in this way. I wonder how she would respond to new art supplies. I wonder what she could create. Your vulnerable share reminds me to be more present with my mom. Sometimes I don't pick up her call. I will not do that anymore. I want to set up a dinner plan with her as one day I may not be able to. Thank you for your vulnerability. I wish you acceptance as you move through this journey.