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Steve Taylor's avatar

Thank you so much for your journal, written with love. I'm going through this journey with my wife, though she's just old and not with dementia or anything. It's one day at a time (she taught me that a few years ago).

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Lila's avatar

My heart beats with your heart, Steve. Witnessing your spouse like this — 😭. I do notice that, with my mom, I have to take however she is that day and truly adapt to that, because her baseline isn’t always her baseline. Thank you for sharing this with me. 💔

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Jon Adam Ross's avatar

Dear Lila, this journal is heart-wrenching and inspiring. I laughed and cried. I'm grateful that you're sharing this journey with such profound and articulate insights. And I'm sending all my love to you and your mom.

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Lila's avatar

Dearest Jon, thank you so much for being out there, supporting my work, and bearing witness. It is deeply meaningful to me as I navigate this with less or more grace.

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Lauren Brazell's avatar

I officially joined this club as of 11/22/25. My Mom has stage 4 cancer. We learned her diagnosis two days after the inauguration. Hell on top of hell. I’ve been by her side through major surgery, two rounds of chemo/immunotherapy and shaved her head last week. For the first time ever, she cried in my arms. This is just the beginning of a long road to a foggy horizon. Through it all our bond runs deeper, though. This was what I needed to read tonight Lila, so grateful you that you share it! Love.

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Lila's avatar

I am grateful for your sharing, Lauren! Sad to have you as a member of this club, and welcome all the same.

Hell on top of hell - I hear you! The governmental fuckery, the Holocausty vibes, my mother's dementia, becoming an adult under duress, and then my Dad dropping dead 12 days ago, I was saying "It's so much all at once," over and over. I've stopped saying that. But it still is. A crucible.

When I had therapy in person in NY last week, the day before my father's funeral, I talked about this and said, "but this happens to most people at some point, doesn't it?" Some onslaught, a barrage. She said yes. And I really think so.

We are living our barrage now. May it be far less barrage-y in short order.

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NinaG's avatar

My sweet little Mom reverted back to her native Spanish, while in the midst of Dementia. I had her in a residential facility where ALL of the staff spoke only Spanish. It was surprising how quickly it happened, like almost overnight.

It was a trip through hell, watching my Mom disappear before my very eyes. But, I will always treasure her repeatedly telling me, “You are so pretty.”, every time she saw me (I am the spitting image of her.)

I miss her. 💔

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Lila's avatar

Dear Nina, how wonderful you were able to have her cared for by a staff full of people who understood her language.

I hold your heart with my heart. Witnessing a parent in decline. I feel your saudades.

Tu eres muy linda, preciosa. Tu mama se ama. (I am not quite proficient in Spanish, but I shall try my best!)

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Catherine  Talbot's avatar

Oh, Lila! Your particular brand of sad humor deeply resonates. Thank you for sharing your experience with your 84 year old child.

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Lila's avatar

And do you know, Catherine, that I've just realized, now that my Dad died 12 days ago and he was the same age, that she is actually 83!

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Lila's avatar

AHahahahaha sad humor! Never heard it put that way before — it’s perfect, thank you!

Take that, high school theatre teacher who told me I wasn’t funny!!!

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Josie L's avatar

This has resonated with me so much. My mother had Alzheimer’s and I cared for her, at home, until she died. I worked from 8.30 am to 6.30 pm, so my 2 sisters and 1 brother had a rota during weekdays. I did evenings and weekends, my partner and I took her on holiday with us. At times she could be good fun. At other times…… the incontinence was hard to deal with, but you just deal with it. But it’s hard.

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Lila's avatar

So much respect and care to you for what you and your siblings did for your mother. Thank you for sharing a bit of your story with me. Thank you for reading. Thank you for resonating. I admire what you did very much.

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Veronica's avatar

It's interesting the way she keeps verifying that she is not dreaming.

I wonder if it would do to validate that observation for her.

During her last several months, my mom seemed lucid, but she regularly forgot the reasons why the doctor had recommended one thing or another.

So, I would explain the reasons again. The explanations had originally been long and interesting, but I gradually boiled them down to their simplest parts.

Some of my explanations were a little simplistic, but she just needed a reason that made sense to her, so I gave her one. Sometimes I'd say, "That's an interesting question. We should ask the doctor about that next time." Because seriously.

It was hard to learn to ignore the fact that I just finished explaining this an hour ago and yesterday and the day before that and last week.

But it was all new information to her every time she asked and every time I told her.

Between the years of acting training that I had in my youth and raising autistic children to adulthood, I was oddly prepared to deliver my lines fresh each time I heard my cue.

I don't know if I was doing it well, but I was doing it.

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Lila's avatar

It seems that you did it very well. I will try to emulate this. Thank you so much for your words, and the lesson. Yes she needs validation and a good mood, quite desperately.

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Jen Johnson's avatar

You are beautiful inside and out and a gifted writer. Thank you Lila!

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Lila's avatar

Jen, thank you for this gorgeous sentiment. I am so grateful to have been given this gift, which carries me through all the eras and all the pain.

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Paul Sullivan's avatar

You're a survivor too, Lila. And it is clear that your mother is truly, genuinely, at the very core of her being, proud of you. And reading your story has helped me see the experience of taking care of my Dad 3 years ago more clearly, which is a good thing. It was all kind of a blur.

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Lila's avatar

Oh dear Paul. Thank you. If you ever write anything about caring for your father, I’d love to read it.

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Apr 10
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Lila's avatar

Thank you so much for sharing this. May her memory be a blessing. ❤️‍🩹

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