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Long post. Beautifully written. 💜

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SDianeL
SDianeL Member Posts: 1,769
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From Michael J Whelan who is fighting cancer and his wife has Parkinson’s. “I'M SO TIRED! There’s a moment in this journey when denial dies quietly in the corner, and hope, the stubborn candle, flickers but does not go out.
It is here when the neurologist stops suggesting, and starts testing.
Not reflexes or memory games anymore. Not whispered notes about gait and balance and pill-rolling tremors.
This is different.

This is the stage where the veil lifts,
and no one is pretending it’s just stress or aging or a bad day anymore.

This is the stage where they say “DaTscan.”
Where radioactive tracers trace what dopamine used to do.
They inject a future into her bloodstream
and ask you to lie still while a machine reads the spaces
where joy once fired freely between synapses.

This is the stage where they say “skin biopsy.”
Where they carve a little piece of her out
to study under glass,
searching for alpha-synuclein
like it’s some lost code to the life you had before. My lord the words and terms I've had to learn.

And then you nod.
You say yes.
Because you need answers but answers cost more than money now.
They cost pieces of her. Pieces of me.😢

She’s quiet lately.
This morning she was hysterical.
Now she's more distant.
Last night so confused.
And when she speaks, the words come out slower and jumbled, like they’re stuck in thick honey.
You see it. You hear it. But you find it hard to understand it.
You feel it in the way she clutches your hand a little longer
after each moment as if I have all the answers. But I know longer do.😢

This is the part where your chest tightens every time the phone rings, where you Google terms you can't even pronounce and scan message boards at midnight searching for a story like yours that ends with mercy and hope.

This is the part where you learn
how heavy love really is.
How brutal it can be
to care this deeply,
to dress her wounds
and keep her spirits up when yours are falling apart.

You are the care partner. But what you really are
is the witness to this head on collision with a life-threatening illness.
To the unraveling.
To the bravery.
To the before and after of a woman you love more than words allow.

And no one tells you
how lonely it is how isolating it is to walk beside someone you can’t save.
To put on a brave face for family and friends while quietly mourning the vanishing of her strength, her spark,
her self.

They call it “the serious stage.”
But there is no stage that isn’t. There is only before the tests
and after the silence.

This is where you are now. Where the questions have sharper teeth,
and the nights stretch longer than any diagnosis.

You are still fighting.
Still showing up.
Still wrapping love around every fragile inch of what remains.
That makes you a warrior whether or not the world sees it.

And if the tests confirm what your heart already knows,
you will keep walking with her.
Through the tremors.
Through the forgetting.
Through the sacred storm of it all.

Because love doesn’t stop
when the symptoms start.

It grows louder.

Even in the silence.😢👩‍❤️‍💋‍👨”

Comments

  • Dio
    Dio Member Posts: 829
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    Beautiful! Thanks for sharing…a hug to all of us on this wretched path.

  • A. Marie
    A. Marie Member Posts: 127
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    Oh, God, this made me weep. But it's beautiful, and thank you for posting it, Diane.

  • RetiredTeacher
    RetiredTeacher Member Posts: 144
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    Tears are streaming down my face. I relate to all of it. I feel such a kinship with all of you going through the same thing as I am. My heart is heavy but I feel the support. Ty for the post Diane and all the info you provided my re:VD and catastrophic disability. You have helped so many!

  • Goodlife2025
    Goodlife2025 Member Posts: 70
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    Member

    Thank you for sharing this and heartfelt hugs for each of us going through each stage.

  • trottingalong
    trottingalong Member Posts: 666
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    Thank you for sharing. Beautifully written, tragically true.

  • Timmyd
    Timmyd Member Posts: 134
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    We keep all DW clean clothes laid out on the bed in the guest bedroom because dresser drawers and closets don't really work anymore. Tonight DW was in the bedroom, grabs a pair of clean underwear, and in her limited vocabulary, indicated she wants to put them on. I am providing my usual encouragement and support. She removes her shoes, then her pants. She wants to put the clean underwear over the dirty. I try everything to get her to remove the dirty underwear. Nothing is working. From experience I know there are two choices.

    1. continue down this path and get a meltdown along with clean underwear.
    2. walk away and let it go.

    Having used both options before, neither of them is particularly satisfying for either of us.

  • Jgirl57
    Jgirl57 Member Posts: 661
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    All of this is so sad and so true; thank you for sharing

  • JulietteBee
    JulietteBee Member Posts: 87
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    "There’s a moment in this journey when denial dies quietly in the corner, and hope, the stubborn candle, flickers but does not go out."

    For my DM, I think today was that day. I simply sat with her and cried.💔

    Thank you for sharing!

  • Biggles
    Biggles Member Posts: 424
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    That is so beautiful. I’m reading it in the dog park while our puppy plays and I need a quiet moment, my DH has refused to come out of the car, I can check on him from where I stand and the tears are rolling down my face. This deep love is so lonely. 😢

  • White Crane
    White Crane Member Posts: 1,022
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    Thank you. I’m choking back tears. This is so true that it hurts.

  • Beachfan
    Beachfan Member Posts: 817
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    How beautifully sad but true. Two years into stage 8 and still reeling sometimes at the past and the pain. Blessings and strength to those who are still behind me in this journey.

  • CindyBum
    CindyBum Member Posts: 447
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    Wow.

  • Russinator
    Russinator Member Posts: 258
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    My eyes are leaking

  • Karen711
    Karen711 Member Posts: 150
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    Wow is right, what an accurate gut punch! He really articulates the agony and the passion. Thank you for continuing your journey here Diane, and sharing this!
    💜

  • CampCarol
    CampCarol Member Posts: 217
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    No words, just tears. Almost 3 weeks into stage 8, this says it all!

  • fuzzy socks
    fuzzy socks Member Posts: 3
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    I often think “ there just aren’t words in my vocabulary to express what I’m going through” so I don’t try. Though those are your words, I feel them and understand them. This life robbing trip is a whole new language.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more