#caregiving — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #caregiving, aggregated by home.social.
-
Random Thoughts, Purposeful Life @randomthoughtspurposefullife.com@randomthoughtspurposefullife.com ·No. Not Today.
Hi friends. Me again. Though I want to feel chipper and happy, my heart isn’t quite in it today, which is exactly why I’ve chosen today to check in with y’all. Pull up an Adirondack chair, pour yourself a glass of sweet tea (or unsweetened if you prefer) and let’s catch up. Let your toes burrow into the sand, and we’ll listen to the waves crash on the beach, because #lifegoals, y’all.
Where do I even start? I’m not even sure anymore which end is up. I thought with the end of immediate surgery prep that life would sort itself out, and that my schedule would settle down. That hasn’t been the case. Because now, it’s turned into another level of fresh hell that somehow has landed on my shoulders, whether or not I wanted that responsibility.
The plan was, when the surgery was postponed, for Hubby to work on lowering his glucose numbers to be closer to adequate control. And to some extent, that’s happening because I’m making better choices for both of us. Until you’re in a position where you’re responsible for another adult’s health, and it’s implied the fallback is on you? You can’t know what it’s like.
After the surgery appointment fell through, his nurse came in loaded for bear, asking ME questions about why his numbers were so out of whack. I really wanted to look him dead in the eye and say, “You know? Not my circus, not my monkeys.” Because let’s face it. I can buy healthy food all day long, but I can’t make him choose cherries over candy.
I’ve struggled with maintaining my agency in this marriage, in this relationship. Not only from Hubby, but from people outside the two of us. Caregivers. People on his health team. Too many people assume way too much about us just looking from the outside inward. And unfortunately, when their assumptions are wrong, they land with a dull thud.
Case in point. A few months ago, a member of Hubby’s medical team came for an annual check-in. This person was not a physician or nurse, but a nutritionist. He came waltzing in (using that word for dramatic effect – he did not actually dance, except around the truth) and threw around broad generalizations. The one that hurt the most, though, was this:
“I mean, you’re married and you obviously love each other.”
I’d like to thank you, kind sir, for not just coming into my home and placing labels that may, or may not, apply to this relationship. If that assumption was obvious to him, that was a gross misread of the room.
If you’re a caregiver, and if you’re tempted to offer such sweeping statements without context, please don’t.
Another instance was a caregiver who I asked to run a simple errand; bring home a sub sandwich for Hubby. She asked if there was something else I needed. I mentioned in passing an on-sale item, but that I wanted to go myself. Instead of doing simply what I’d asked of her, she bought the thing anyway. Perhaps I should’ve been happy because she saved me a trip. But, what if the trip itself was my respite? She took that from me without asking.
I’ll preface this next part by telling you about a blessing that arrived in April this year—a 55” Samsung Smart TV. I mean, this thing is beautiful, and I got it at no charge through an Amazon program. Being as it’s fifty-five inches on the diagonal, it was a larger TV than I had ever handled, so after I assembled the stand, I needed help putting the new TV up. And that’s where I ran into the second, bigger issue.
The caregiver from the grocery store debacle was the same lady who helped me that day. And while I truly appreciated her help with the physical aspect, she, in her excitement, took over the actual set up. While I was working through an issue connecting my Samsung account, she simply kept going with the remote without asking me. I hadn’t asked her to take over. I was still doing it.
Help stops being help when it overrides the wishes of the person you’re helping.
It might seem like an overreaction to say that she is no longer welcome here. But having someone override my wishes in my own home?
Hell no. And while you’re leaving, don’t let the door hit you on the way out.
One of the reasons you haven’t seen me around much on the pages of this blog is because my free time is no longer my own unless I’m deliberate about it. I have to carve out moments—opportunities—where I say, “You know what? I’m off-duty while your caregiver is here.” Hubby seems to believe that it’s my job to be a “gracious hostess.” They’re not houseguests. They’re employees.
The simple truth is… No one will just magically grant me three unhindered hours of time to write, make appointments, answer emails, call a friend, or just listen to music. I have to take those hours, or they’ll slip away. And since leaving my home has become more and more of a challenge, I’m creating a space where this time can quietly exist—whether it’s an hour or just ten minutes—without someone needing my energy or attention.
Every other Saturday, I have been responsible for an enormous task that I’ve done since 2023. And before today, though it wasn’t entirely enjoyable, I did the task with no complaints. But this morning, an argument broke out between Hubby and me that helped to put things into perspective. He wants autonomy with his healthcare decisions? Fine. Then that’s what he’ll get, but I can guarantee it will be nothing like what he imagined. Actions have consequences, something he seldom has to experience because I’ve always been here to absorb them.
- Meds run out? I make the two-hour round trip to Tampa.
- Glucose is out of control? I absorb the blame for his poor choices.
- Caregiver has a question? The first thing said is, “Hon, where is…?”
Consequences never disappear. They simply migrate to whoever is closest, to the one who has always accepted the responsibility.
Does no one ever think, “Hey, maybe Wendy actually needs a break”?
No. No, they don’t.
Because Hubby sees just his wife.
Because the nutritionist saw just the caregiver.
Because his aide saw just the family manager.
None of them see Wendy, the person. Wendy, the author. Wendy, the cat mom. In my loss of self, I’m invisible unless I say, in no uncertain terms, “No. Not today.”
So today, I washed my hands of the “big thing” that took up four to five hours of my Saturday every other week, and placed that responsibility where it probably belonged all along—on Hubby. On his care team. And little by little, this woman is taking back the things she’s lost, one stolen moment at a time.
Some people say to go outside and touch grass. In Florida, that’s terrible advice. The grass has fire ants. Stand in the rain instead. It asks nothing of you except that you be present.
Cover image generated by ChatGPT. All written content is the product of human creativity.
©2026 Wendy Londona. All Rights Reserved
#CaregiverBurnout #caregiving #Family #Healing #Journal #life #love #MentalHealth #Recovery #Writing -
Steve Way appears in "Furious" as the character Alden who, like him, has physical disabilities that mean he needs a caregiver. He writes for his newsletter about the lie that disabled people are a burden, the fact that everyone needs care, and the economics of it all. "My care shows up as a line item. Yours is dispersed across a hundred transactions you don’t think about, most of them performed by people paid worse than they should be."
-
Wrote a letter to my patrons today about shutting down my Patreon. You can read it here if you like: https://www.patreon.com/audioerotica/posts/final-post-166389114
-
RE: https://federate.social/@jik/116934183567815196
Today's update on the saga of Uncle's electric wheelchair repair…
Full saga here: https://blog.kamens.us/2026/08/10/how-hard-should-it-be-to-get-an-electric-wheelchair-repaired-with-insurance-coverage/
Updates:
- July 21: 5 days after tech examined wheelchair in Uncle's apartment, NuCare still can't tell me the result of the examination.
- July 24: NuCare claims wheelchair was picked up and is at warehouse. [LIE!]
- August 10: I discover wheelchair is still in Uncle's apartment. They claim they'll pick it up on Thursday.
#healthcare #healthInsurance #caregiving #sandwichGeneration #NuCare -
~200,000 #Haitians with #TPS hold jobs, with large concentrations of workers in #healthcare, #foodservice, #warehousing, #retail & long-term #caregiving, acc/to an analysis of government data by the #immigration advocacy group FWD.us. Business owners have been preparing for weeks by raising sign-on bonuses, cutting shifts & making inroads at community colleges & high schools to hire new staff, industry leaders said.
#FuckSCOTUS #Trump #law #WhiteSupremacy #TheCrueltyIsThePoint -
Also in this #ChangingPopulations, we focus on caring, working and ageing, and ask whether Britain is prepared as we face a “perfect storm”, with people expected to work longer, fund their own future care, and provide informal unpaid care, all at once - page 4
▶️ https://sway.cloud.microsoft/6PeRZlzYry4nhGtm?ref=Link
#demography #population #ageing #laterlife #care #socialcare #unpaidcare #retirement #pensions #employment #healthinequalities #familynetworks #caregiving #socialpolicy #ageingresearch #socialscience
-
New post: The Pipe and the Voice
https://lanie.work/technology/the-pipe-and-the-voice/
#Disability #Ai #Writing #Accessibility #Caregiving #Assistive-Technology #Personal #Technology
-
😞 Ugh, oh.
Maybe stopping for a rest wasn't the wisest move after overloading my back pack 🎒 with goodies from the Amish stand.
Two jars 🫙 of chemisty 🧪 - set -free-homemade jam peach and blueberry 🫐 , a jar of pickles🥒 , another of sauerkraut🥬 , and a watermelon.🍉🤦♀️ In my shoulder bag, 2 large zucchinis, snap peas🫛 , and onions🧅 .Note to Self: Smarten up, you silly old 👵 woman, you're Not 20 years old!
Oh well, the delighted smile on his face will be worth it.😊
-
Carolyn Hax Advises on Handling In-Laws with Memory Issues
📰 Original title: Carolyn Hax: Tell in-law with memory issues she forgot her grandkids’ birthdays?
🤖 IA: It's clickbait ⚠️
👥 Users: It's clickbait ⚠️View full AI summary https://en.killbait.com/carolyn-hax-advises-on-handling-in-laws-with-memory-issues.html?utm_source=mastodon_world&utm_medium=social&utm_campaign=killbait.mastodon_world
-
Another night 🌛 walking along the hallways of the retirement 🧓 home and again the one nurse ⚕️ and the sole PSW are sleeping. 😴
So, if there's a fire 🔥 in this old building who will move residents? There isn't one person here without mobility problems.
How quickly does a sleeping nurse respond to a resident falling and bleeding from a head injury? I've seen it happen at night.
This is why I moved here,
to watch over my husband. -
:blobcateyes: Walks by the bed. Stops.
Turns and walks back and looks under the bed at two glowing lights.
💭 'Well, that's an unusual place to set your hearing aid charger. I wonder if you will remember in the morning.
Hmmmm. 🤔 Probably not because of the sundown effect.'
Quietly reaches for the case and lifts it back up to the table.
' There now, you won't be upset when you wake and can't remember putting it in an odd place".😊
Sleep well, my love. ❤️ -
Smurfs Log: Odd and Weird Feeling
Gosh! I'm having an odd and weird feeling. I have not only convinced bureaucrats to correct their errors, but today the headstone on my mum’s grave has been put back in place and I have paid the last bills. And to top it all off, the house has been sold for the asking price! ❤️
* They will do a construction check and make sure everything is in order.
Conclusion: Nothing is to be done by me in the next two months 🏝️
-
Smurfs Log: Fighting Bureaucracy (Paarse krokodil besluit)
* Part of the "Housecleaning (Things Left in My Mom's House)" series
Today I convinced bureaucrats to correct their own errors regarding my Mom’s property 🥳
-
New post: Becoming
https://lanie.work/advocacy/becoming/
#Disability #Faith #Chronic-Illness #Long-Term-Care #Identity #Neurodiversity #Personal-Growth #Caregiving #Advocacy
-
RE: https://federate.social/@jik/116926098440963285
Update on Uncle's electric wheelchair repair saga…
- 3 calls from #Healthfirst manager reassuring me that repair will be approved and Uncle won't be charged for it.
- Approval notice for repair (finally!) arrives via email.
- Tech comes to evaluate chair. Uncle claims afterward tech said they would take it away for repair/replacement which would take months. I don't know (yet) whether that's accurate; Uncle is unreliable narrator.
#healthInsurance #caregiving #sandwichGeneration #healthcare -
RE: https://federate.social/@jik/116920403228069793
Here's today's update on the RIDICULOUS saga of me trying to get #NuCare (medical supply company), #Healthfirst (insurance company), and its contractor #IntegraPartners in #NewYork to fix Uncle's electric wheelchair.
A supervisor at NuCare just called and told me that they did submit the request properly to Integra, and Integra did give them a reference number for the request, but then somehow Integra "lost" the request.
#healthcare #healthInsurance #caregiving #sandwichGeneration
1/2 -
RE: https://federate.social/@jik/116913642631750667
Fam, I am SO FUCKING PISSED RIGHT NOW. I am INCENDIARY WITH RAGE.
I spent a half hour on the phone today with #NuCare, the company that's supposed to repair Uncle's wheelchair. After a long hold time, they claimed the insurance (#Healthfirst) still hasn't authorized the repair. They gave me the ref. number for the request Healthfirst gave them, so I could call Healthfirst and find out what's going on.
#healthInsurance #healthcare #sandwichGeneration #careGiving #IntegraPartners #LuigiWasRight
… -
New post: What the System Doesn't Count
https://lanie.work/advocacy/what-the-system-doesnt-count/
#Disability #Long-Term-Care #Caregiving #Chronic-Illness #Autonomy #Medicaid #Advocacy
-
A Caregiver’s Guide to Palliative Medicine by George J. Taylor, M.D.
A compassionate, detailed reference for making informed end-of-life decisions
The post A Caregiver’s Guide to Palliative Medicine by George J. Taylor, M.D. appeared first on Independent Book Review.
https://independentbookreview.com/2026/07/08/a-caregivers-guide-to-palliative-medicine-by-george-j-taylor-m-d/#bookreview #ACaregiversGuidetoPalliativeMedicine #AtmospherePress #caregiving #GeorgeJTaylor
-
"You Did It!" , then a kiss and a hug.
A reward for the two days of arguing with mansplainers, obstructive and ignorant profit-over-people supervisors.
Definitely worth the effort. 😊One problem off the list,
three more to solve.
Hey Universe,
how about Pausing the Problem Production Line ? I could use the rest🥴 -
Young people in India's northeast are learning Japanese and training as caregivers for jobs in Japan, drawn by better pay and new opportunities. But many also face language barriers, homesickness and the realities of life in an aging society. https://www.japantimes.co.jp/community/2026/07/06/issues/indian-caregivers-japan-migration/?utm_medium=Social&utm_source=mastodon #community #issues #indiansinjapan #caregiving #elderly #india #nursingcare #immigration
-
Once again, Eric Jorgensen nails it.
The constant uncertainty about government supports is, in many ways, the hardest part of planning for the future when you are a caregiver of a child with significant disabilities.
Read here: https://open.substack.com/pub/waypoints/p/the-rules-are-changing-the-families
-
New post: Grieving the Version of Me Everyone Thought I Was
https://lanie.work/advocacy/grieving-the-version-of-me/
#Disability #Autism #Blindness #Chronic-Illness #Long-Term-Care #Caregiving #Advocacy
-
“Disabled people make up a significant portion of the population, and most nondisabled people will become disabled at some point in their lives. Caregivers [...] also rely on remote work to manage responsibilities that don’t pause for a commute […] Isolation is a legitimate concern. So is exclusion. Any conversation about the costs of remote work needs to weigh both”
One for those at the far back RE: #DistanceWorking #RemoteWork #FlexibleWork #Disability #Caregiving
-
New post: The Crisis Got Me Here, but the Care Need Was Already Real
https://lanie.work/advocacy/crisis-care-need-was-already-real/
#Disability #Long-Term-Care #Caregiving #Accessibility #Autonomy #Medicaid #Advocacy
