19 Comments
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Amy Cowen's avatar

Oh… that’s some really tough math there to deal with. Great bookshelf metaphor. I thought things had taken a real turn though until that final moment. So sorry. Really touched by this portrayal of the nighttime need to not be alone — such tender moments even though it means sleepless nights. Hoping for better luck this weekend….

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Nan Tepper's avatar

I did all the things—by which I mean, shaking her and yelling, “You’re not trying hard enough!”

I couldn't stop laughing when I read that. Could not.

Also, why does the app use a martini glass (margarita) as a symbol for hydration? Alcohol and Seroquel don't mix well! Love you, love this. Love your mom and her aide. You're the best.

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Nan Tepper's avatar

Sure is.

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Jodi Sh. Doff's avatar

thank you, love bug. also, there were many years I turned to vodka for my early morning thirst, so….I’m glad you laughed. Laughter is indispensible.

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Prajna O'Hara's avatar

This is so close to home. Listening, questions, and undying patience and compassion.

I’m inspired to write about caregivers.

My oldest ‘non disabled’ daughter counted 81 before she was 18, that was 12 years ago.

Love the math.

True story: one nurse with Libby in the house locked us out because she thought we were her abusive husband with a gun. That was when agency did the hiring. For some years we been able to be the agency

You’ve given me things to think about

Thank you Goddess Jodi

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Jodi Sh. Doff's avatar

Yeah, so much better not going through an agency, although I was grateful they were there in the beginning until I got the hang of things

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Victoria's avatar

BIG hugs hon! Bless you for the Carer Mentor shoutout xo

I hear you. I've several stories too..

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Jodi Sh. Doff's avatar

I know you do!

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Janine De Tillio Cammarata 🖊️'s avatar

Such a compassionate and heart centered display of love for your mom and compassion for another human being in the midst of your all you’re caring for.

My siblings and I are just at that point where we’re hiring someone to come in to shower my mom. She wants the bare minimum but needs so much more. So we’ll continue to do what we’re doing and get her showered once a week. There are so many unknowns with having someone come into her apartment. My mom likes the caregiver so that’s a plus.

Your words remind me to have patience, to be compassionate, and to hug my mom even more.

Thank you ❤️

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Jodi Sh. Doff's avatar

Liking the caregiver makes life a LOT easier, but I get you, yes, having someone come into the home is, well, there’s a lot of trust involved there. We have it a bit easier because Mom lives with me. I’m not here all the time, but I don’t worry about any slacking off or misbehaving on the aides part - I stay home for a few days to show them around, keep an eye out and so on. So, the one that let her stay in her wet pull up all day despite Mom saying she had to go to the bathroom AND there being a commode right next to the bed AND Mom could still walk then, she was out on her ass the moment I realized it when she said “Well, she’s wearing a diaper.” If I’d wanted nursing home apathy, I’d have put Mom in a nursing home.

Sounds like your Mom is still ambulatory and somewhat self sufficient, but any help I can be, please reach out. I have a bunch of good info and resources here: https://jodishdoff.substack.com/t/the-village-resources-media-and-podcasts ❤️

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Janine De Tillio Cammarata 🖊️'s avatar

Amazing that someone could let another person stay in a wet pull up. We’ll definitely be around to make sure all is well.

Mom uses a walker and has fallen a few times with many hospital visits but she wants to stay in her apartment. So we’re making that happen.

Thank you for the resources!

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Jodi Sh. Doff's avatar

Seriously, reach out directly any time. This is some real grown up stuff I know I never expected to have to manage. And having a community makes a real difference for me, in my own mood and sanity as well as sharing experiences. Sending love and strength.

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Anne's avatar

I am in awe at your patience with this aide.

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Jodi Sh. Doff's avatar

Thanks, but it's partly because I'm a really wonderful person (sarcasm font implied) and partly because good aide as hard to find and without one it's just she and I for however long. Our relationship is as good as it is because I've set it up that I have support 9-5, 7 days a week. Otherwise, as I've said, murder/suicide...it's not a great option, ya know?

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Leslie Senevey's avatar

So good, Jodi. And so much I relate to. I didn't know about the app a couple of years ago when I was managing my mom's caregivers. I wrote, designed and printed an entire handbook myself. And oh my God the caregiver issues. We had stolen debit cards, stolen medications and bedbugs courtesy of some of ours. (Haven't written about all that yet but I will.) So relate to living inside a volatile marriage as well. I also retreated to the closet. Or the doghouse outside. And your sense of compassion is beautiful. You are doing right by your mom.

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Jodi Sh. Doff's avatar

Oh my. We went through a couple of notebooks and designs, a few apps until I found this one. You have to have something to keep it all straight, especially if there are multiple caregivers. I've been really lucky with the aides. We miss the mark sometimes but nothing stolen and I'm terrified of bedbugs. It's why I stopped going to movie theaters a few years ago when so many were closing down because they had bed bugs. Yikes. I guess the pandemic sort of eclipsed that.

When you said you designed and printed your own handbook, then the retreating to the closet. We have a lot of parallels, friend. My favorite place was behind the giant evergreen tree in front of the house. No one could see me, but I could see everyone and got to sit on a bed of soft pine needles. Weird as it is, it's a fond memory. I felt very safe there.

Thanks again for reading, and being part of this journey called "When Life Gets All Lifey."

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Leslie Senevey's avatar

When Life Gets All Life-y is a great name for a Substack publication…

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Melissa Huffsmith-Roth's avatar

I love to read your writing

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Jodi Sh. Doff's avatar

And I love that you do! Feel free to tell everyone you know. Or stop people on the street and preach the gospel according to Yetta.❤️

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