Susannah Fox Profile picture
Aug 23, 2020 14 tweets 5 min read Read on X
I’m reflecting on a challenging week as a caregiver for an elder who lives 3 hours away from me. Thanks to luck and preparation, he is OK. [THREAD]
I want to share resources for anyone who has family members living alone -- young, old, and in-between. If we had not done the work to prepare for a crisis, my loved one may not have survived this week.
First: Everyone should make an @atlasofcare Care Map. It will help you visualize the people, love, and services that surround a person. And it will expose holes that need to be filled. atlasofcaregiving.com/caremap/
Second: Introduce yourself to anyone essential and make sure they have your contact info.

The next-door neighbor noticed an unusual lack of activity at our loved one’s house and called my mom, who lives nearby. The neighbor was empowered AND she had my mom’s number.
Third: When I agreed to be the primary caregiver for my loved one I immediately asked to have an open, frank conversation about our expectations. This means that he and I knew what we were getting into, what resources we each could bring, what our goals are. We are a team.
(I should note that on paper my loved one is a distant cousin but in life he's like an uncle to me. It was a bit of a level-jump to become his official "person" so I needed to close the gap fast.)
Fourth: The topic for our first formal caregiving meeting focused on end of life decisions. It was an intimacy hack to go through the @EngageWithGrace 5 Questions. I know what to fight for now. [ALT text included] Can you and your loved ones...
Fifth: My loved one's @atlasofcare Care Map revealed big holes and we worked, slowly, toward filling them. Top priority: a home health aide service to drive him to medical appointments and send me reports.
Having a relationship with an excellent home health aide company was KEY when a crisis hit because we could transition seamlessly to a higher level of care for him.
Even if your loved ones do not need (or are not ready to accept) help from a home health aide, please consider doing the research NOW to find a reputable provider. Sneak them in through a side door, if that makes sense, as I did by setting up the medical appointment aide.
We are not out of the woods yet, but I’m taking today to be thankful and to enjoy my garden.

[ALT text included] A huge yellow sunflower blo...
Thank you @rajivzume for your visionary & USEFUL @atlasofcare Care Map. vimeo.com/256815232
Thank you @adrane for your vulnerable & courageous work on both @EngageWithGrace and @ArchangelsMe

I feel seen as a caregiver thanks to you. #LookLoveLift
Thank you to my mom @BFFox, a master caregiver, from whom I am learning the craft.

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More from @SusannahFox

Sep 30, 2022
"The patients treated with [Amylyx] experienced a 25% slower rate of decline in performing essential activities such as walking, talking and cutting food compared with those receiving a placebo."
When ALS news breaks, I turn to on-the-ground experts who follow every twist & turn, like @alsadvocacy
"Instead of thinking you are protecting me I want you to recommend approval so that I have the chance to live" - @bsw5020 of @iamalsorg in an excellent story by @PamBelluck
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Mar 31, 2021
On #TransDayOfVisibility I want to lift up the voices of trans young people who shared how they use social media & digital tools to pursue health & resilience (thread)

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"I guess just seeing people expressing themselves the way they want makes me happy because I can't really do that." —14-year-old non-binary, trans person #CopingWithCovid #TDOV
“I use YouTube videos to cheer myself up and distract myself.” – 18-year-old trans man #CopingWithCovid #TransDayOfVisibility
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Mar 12, 2021
Re-reading: LET PATIENTS HELP, by @ePatientDave + @DrDannySands (because I learn something new every time) epatientdave.com/let-patients-h…
Since I'm a card-carrying geek who likes to read footnotes and click, click, click until I get to the original source, I finally read a classic paper by Warner Slack, MD, and cited by @ePatientDave + @DrDannySands ncbi.nlm.nih.gov/pmc/articles/P…
"The basis for our use of the computer in medicine is the thesis that the largest and least utilized provider of health care is the patient."

- Warner V. Slack, MD, in a paper delivered in 1976 (!) and published in 1978
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Mar 1, 2021
Thanks to @VentureValkyrie and @DShaywitz I got to learn from some of the superstars of health & technology - here are some of my favorite shows & guests...
I listened to this #TechTonics interview with @IyaKhalil TWICE, it was that packed with insights: venturevalkyrie.com/new-tech-tonic…
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Feb 23, 2021
A friend of a friend was recently diagnosed with #LongCovid. She is receiving good clinical care but asked for recommendations for where she could find #PeerHealthAdvice. Here's what I wrote back (and yes, I'm looking for feedback & more suggestions!):
The @itsbodypolitic COVID-19 support group is a useful #LongCovid resource: wearebodypolitic.com/covid19
One advantage of @itsbodypolitic is their affiliation with @patientled research for #LongCovid which is tracking disease progression and publishing studies that get attention from the World Health Organization and NIH patientresearchcovid19.com
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Aug 24, 2020
If it's @zeynep appreciation day, please let me join in! [THREAD]
In 2014, many of us were shocked and dismayed by a cruel and senseless attack on @AdamsLisa, who was living with metastatic breast cancer. @zeynep wrote one of the best take-downs in response: medium.com/technology-and…
It was vintage @zeynep - unsparing in her critique, generous in her explanation of the lessons that people could learn from the episode, loyal to the facts, and deeply humane. So much so that @Sulliview cited it in her column: publiceditor.blogs.nytimes.com/2014/01/13/rea…
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