We thought the Alzheimer’s diagnosis would be hard.
Then, that the slow losing of mom as we knew her would be beyond hard.
These things seemed shatteringly difficult for so very many others.
How could we expect anything else?
But we’re nine years in now.
And now we know.
Those aren’t the hard parts.
Alzheimer’s strips away what doesn’t matter right now,
exposing what does matter, to anyone fully present,
again and again,
much like the best
within schooling, science, religion,
philosophy, nature, art, comedy, parenting,
and house cleaning.
Strips away what doesn’t matter. Reveals what does.
First, within her, then within us,
then within those who love us enough to move with us.
Sure, some days we expect to shatter.
But we actually don’t. We ripple.
Alzheimer’s is a stone
thrown onto a pond
shaking us as it sinks deeper
but if we move together
we don’t shatter.
We are better for it, most days,
if we shift, turn into it,
pay closer attention
adjust our individual, our collective, selves.
Alzheimer’s first stripped away her filters
so she always says exactly what’s on her mind.
Sometimes it’s painful, yes, and
mostly it’s fun, even hilarious sometimes.
Then it stripped away her boundaries,
so she greets and loves whomever she wants to now, even strangers.
Turns on her heel, walking away from those she doesn’t like,
without fuss, regret, or guilt.
It strips away our boundaries too.
We, too, now greet and love those we’re meant to.
Walk, without guilt/regret/fuss, just like her,
away from situations that regularly cause us pain.
Then it stripped away independence:
hers, dad’s, ours, our closest others’
exposing our interdependence.
Good riddance independence. You are the most overrated value our country cranks out.
We are stronger now. More honest with ourselves, each other.
Explore depths across ourselves
we couldn’t reach before.
The closer we get, the stronger we get, the more truly independent we are.
Last year it washed away her fear of looking bad
exposing silliness and love and laughter at her/our core. Yes, and
that’s rippling out into us now
for example, writer me becoming poet me,
my sister becoming something wonderful and new, too,
as our now-ridiculous fears wash out to sea with hers.
It strips away the illusion of control
requiring and allowing us
to prioritize ourselves
to create and re-create together
at times by the minute
a new response to this right now.
We’re becoming improvisation masters,
just like her. She’s our muse. Our center.
Like she’s always been
always can be.
This year it’s striping away the years
giving us a front row seat
to a gathering of people
we never imagined we’d meet.
To a mom at times in her forties, thirties, twenties
This, because we’re together, in itself, is not that hard.
Mom, at all stages, was, is
Happy. Loving. Curious. Helpful. Silly. Most of the time.
Cranky only when tired, and often not even then.
This is where the deeper blessings of our family reveal themselves.
Not all Alzheimer’s families are this lucky.
Mom is happy, back then and right now, one, and the same.
And even luckier, on her darkest days, she still taps into empathy,
using it as a life line, sometimes better than the rest of us.
We are so so so amazingly lucky.
Good to remember when we find ourselves embarrassed by her embrace of total strangers.
As we watch the stone
send ripples out across the pond,
it’s quickly revealed
who our closest friends and family are:
who moves closer, with us, who moves farther away, or gets pushed away.
Those who move with us love all of us, no matter what,
are deep wellsprings of empathy,
bring out the best in us when we are at our worst,
have the courage to assume the best, lead with forgiveness and kindness
no matter what.
What a tremendous gift in the face of fog and chaos:
to know exactly who your partners in crime are today, and who aren’t
to find solace, peace, even here.
For us, what’s hard about Alzheimer’s isn’t Alzheimer’s.
What’s hard is some people’s response to it. For example
1. Well-intentioned friends who show up to fix us,
instead of just being present, with us, here, open, hanging out, improvising with us.
hello, that was me until Alzheimer’s disease.
2. People who don’t understand the disease’s insidious impacts
to primary caregivers
who take bizarre new behavior in dad personally and hate him for it.
We are sorry. And we are selective now about who they see
because we have to be or he’ll shatter.
Hate him/us and you’re out, for now.
Thanks to Alzheimer’s we know this means just for now.
We hope you do to. We mean no offence.
3. Ourselves some days.
Sometimes we wallow in individual pain.
Forget the feelings of others.
We have to forgive ourselves more often now.
We grow weary. Make big mistakes.
We are becoming masters of forgiveness
because we have to be.
To ripple not shatter,
we then open to growing closeness
because of shared pain
instead of chronically dwelling
on individual pain.
Otherwise we get stretched too thin
forget how to improv, how to love without limit.
4. A father/caregiver/husband
trying to do everything himself.
Fucking Greatest generation
how I want to smack the lot of you some days.
Refusing to ask for or allow more caregiving help
Exhausting himself into a shell of his former self.
Living with his own chronic sicknesses.
Doing way too much.
Bringing forth his own sleeplessness, memory loss and confusion
bringing forth new stories of family pain as a result.
Reimagining extended family to highlight anger, erase love,
at times seeing monsters where none exist
tilting at windmills preferable to receiving or asking for help.
And, far, far worse, that this exhausted man
manages to pull forth bad behavior from trusted others. Horrible.
I still can’t believe he has that much influence in him.
Will he join us in rippling across the water?
Or will he shatter?
Too close to call.
5. People who try to mentally divide
our entirely un-dividable parents
trying to love and support
raising one up as a saint while insisting
the other is the devil incarnate.
Sorry, folks, there is no half here. We are whole.
Team Linda has become Team Jinda now.
All good. All crazy. All the time.
As are we,
with anyone brave enough
to stand with crazy-now us.
They are so whole, in fact,
that it’s far easier for him to join her there –
walk into the lonely chaotic fog of Alzheimer’s land –
than to watch her to go there alone.
6. Distant, angry, attacking people anywhere
who judge from far away,
assume the worst of people instead of circumstances,
without firsthand understanding,
content to assume, blame, point fingers from afar,
instead of moving closer and connecting.
So goodbye politicians. Goodbye Internet trolls. Goodbye chronic haters.
We literally don’t have the time.
wow, that used to be me
content to stew and hate from a distance
Hate within me now has a 3-minute shelf life.
7. People who blame the primary caregiver
for “taking her away from us.”
Please, for the love of God,
knock that shit off.
As if people who love her
could really be stopped
from seeing her, calling them, writing her,
visiting, sending care packages,
communicating with her somehow.
We communicate more now
than ever before,
even though most days,
she has very few words to work with.
They love visits, letters, cards, packages.
She needs a sidekick now
to stay on track
finish sentences and thoughts,
in person, on speakerphone, or Skype,
but she loves conversation (before 5 p.m.)
loves listening. Loves you.
I know it’s scary. Seems impossible.
But it’s not actually impossible for you, like it is for them.
You still have the gift of letter writing,
of sending cards, little packages covered with doodles, or stickers.
Of having free time
being able to pick up a phone,
remember and dial numbers,
to reach out to someone you love. Of learning Skype
so you can see someone at a distance. Emailing.
Stop. Blaming. Others.
for your perfectly reasonable and acceptable decision
to step away for a while from
what you can’t bear to see and hear right now.
can be a major pain in the ass
but he is not the obstacle you imagine him to be.
Our own fear is.
Our own apparent inability
to do anything at all to kick Alzhiemer’s to the curb.
Our own inability
to change what IS into what WAS.
Dad’s in no position anymore to bat away hands outstretched in love.
But we are in a position to love
even in the face of misplaced anger and unreleased rage at being lonely,
destined to fail to save the love of your life,
at having to grieve, every day. For 15 years (no wait, 6 now). If we’re lucky.
WE are not powerless now. Just the opposite.
We are being asked to become stronger and more powerful than we were.
Accept what is. Channel anger into something good.
Step out in courage! Be more persistent! More fucking loving than ever before!
She would for us if she could.
And you may never believe us now, but, if he could:
So. Would. He.
Where he’s heading he’ll soon forget he ever turned his back on you
but you may not forget
that you turned your back on them in return.
I really don’t want that for you. We love you.
8. And to the family member
content to periodically yell
at my sister
for not adequately fixing
our evil father
while she’s working with him to feed mom, dress mom, bathe mom,
noticing his closed, tired eyes,
hands shaking from his own non-stop coughing, from forgetting to eat.
Watching him fall asleep mid-sentence, mid-joke, mid-conversation,
because he’s awake every hour, all night, with mom.
Watching mom bring him his pills, with water,
because he only has the energy
to help her remember to always take hers regularly
usually forgetting his own.
Please stop venting at my sister.
Bring your anger your pain your frustration
your deepest rage
to me now.
I will hear you for her.
Jen needs a break.
Honor this request
or you might step on her heart so completely
that you’ll lose her. Completely.
I doubt you will. But I’d rather not take that risk
with her heart or yours.
Alzheimer’s never asks us what we want. Doesn’t give us a choice.
Not those of us really close to her.
Here in the heart of it
we must get closer to people who want to connect and help,
move through pain together.
We must get on with the business of loving who we love
letting go of people and things and places
we don’t have the energy for right now.
When we don’t, we shatter.
She gives us
FUCK THIS DISEASE!
FUCK THAT WE REGULARLY LOSE PEOPLE—A FUCKING LOT OF PEOPLE IT TURNS OUT—BECAUSE OF IT!
FUCK THAT FAILURE TO SAVE MOM IS OUR ONLY CERTAINTY!
FUCK THAT WE FAILED TO KEEP OUR FAMILY TOGETHER THROUGH THIS!
FUCK EARLY ONSET ALZHEIMER’S THAT GIVES JEN AND I A CONSTANT DAILY REMINDER THAT WE MAY GET THIS DISEASE AND PUT OUR HUSBANDS AND LOVED ONES THROUGH FUCKING ALL OF THIS AGAIN IN A FEW YEARS!
FUCK FUCK FUCK!*
*Hmm, I may be more at risk for Tourette’s than Alzheimer’s.
Ok, so we shatter
we fall completely apart
we are still ripples in the same pond.
We’re still us.
Still the pond.
You don’t scare me now, shatter, you ratty little weasel.
Wow are we learning how to love right now, flaws and all. Flaws are where we connect. We fucking love flaws!
Wow are we deeply grateful for tiny little things, the smallest kindnesses. That warm breeze against your cheek? A gift.
Wow can we move fluidly, together, with exquisite grace. Laughing. Without words. Like geese and jazz musicians.
Wow can we get through anything, forgive anything, including ourselves.
What?! We can now control how long hate stays within us?
Aware that it is our choice and that this small, too-short life is precious?
We can choose seconds or minutes with you and not be stuck with you for months or years?
We can save our energy/selves/family/love/world from you?
I had no idea we were this powerful.
I choose 3 minutes with hate now, out of habit. Take that, silly hate, stupid shatter.
What?! We can have fun now
the deepest fun we’ve ever had
We can walk up to anyone?! Hug, with true connection, whoever the fuck we want to hug?!
Good God. The whole earth is our playground.
I find myself happy to be Alzheimer’s student.
I find myself happy to be her student, most days**.
**See FUCK FUCK FUCK above.
I’m happy to spend time in her company
among others here
people who are happy and willing
who move into exhaustion and anger and rage visibly
who come back out again, this time holding hands and smiling.
Our rag-tag ALZ improv troupe
is learning that the way to keep things moving
is to respond with “Yes! And…”
to what IS right now
to the worlds created by our companions,
whether or not we understand or agree
or think their world has any ground or truth
in our reality.
We’re learning to expand their world and ours,
by weaving our worlds together in real time
co-creating new worlds within which all of our perspectives and responses
are valid, proper, and true.
Today–9 years into Alzheimer’s–mom has become a master of world weaving.
The Dalai Lama of improv.
While the rest of us just try to keep up.
It can be frustrating to encounter
people who can’t really see us now,
can’t improvise with us right now,
especially loved ones we used to count on.
But except for being tired and scared at times, ourselves,
we have no reason to bear anyone ill will
If we step away from you
we’re just not ready right now
to have our world expanded by yours.
Or you’re not quite ready to really see us
as we truly are
We have become a river.
We aren’t what we used to be.
Some people fear us now. We live with that.
Some love us more than ever:
closer and reminded that we’re still us, still here
loving to laugh, cry, and hang out.
Belting out Sisters in White Christmas more sexily than ever.
You just have to be willing to see more of us now
willing to say “Yes! And…”
willing to believe that you, too,
if you step toward us
will survive the chaos, survive the shatter
to come out playing together on the other side.
I read this and I am filled with sorrow. Why her? Why you? Why him?…… and yet, why not?
Being filled with sorrow sucks and is a good thing. Can stretch our insides wider so that we can be filled with other, greater things. So can loudly screaming fuck, fuck, fuck about everything that truly sucks. I highly recommend it. 🙂
Beautifully and powerfully written. Much love to you all!
Thanks Julie. Much love back at you!
I just want to say thank you for this Lori – there is now way I could ever appreciate or understand what you all are really going through. I will offer no platitudes or bromides, just know that if you ever need anything – you have but to ask.
Thank you Jerry.
Wow! Thank you for sharing your experience and vulnerability! Your idea of ‘shattering’ not being scary any more reminded me of a great article I read a few months back that talked about the ‘never-not-broken’ goddess and her strength. I thought it might resonate with you, too:
Love and Light!
Wow. Great article Jen. Thanks for sharing! I’m so sharing that with others! And thanks for the love and light. Right back at you!