#carer
This was a sobering (devastating) issue to report on:
The UK government’s 'blanket erasure' of older people with learning disabilities is leaving a growing population unsupported and piling further pressure on family carers.
Grateful for insights from and the light being shone by @sarasiobhan and team and Dawn from campaigning self-advocacy charity My Life My Choice.
Wow, the pace keeps increasing on Mallon Model downloads, now at over 3,300. 😍
You're welcome to join in the micro compassionate community movement and read the free article here: https://journals.sagepub.com/doi/10.1177/26323524211052569
Avoid carer burnout, support end of life and best quality ongoing care at home in an easy, straightforward way. Online masterclasses for international time zones are available, email info@gdep.com.au for details.
#GDEP #MallonModel #AskAnnetta #ComCom #EndOfLife #HomeBasedDying #carer #caring #support #network #masterclass #research #academia #AcademicChatter #OriginalResearch #CompassionateCommunity #EOLD #DeathDoula #DeathPositive #DisabilitySupport #care #EndCarerBurnout
This is a one minute film from Sibs...he UK charity support siblings of disabled children and adults and I'm proud to be a part of it.
The clip was shared for National Siblings Day on Monday - but is relevant every day.
#NationalSiblingsDay2023 #sibling #SiblingStrengths #disability #learningdisability #carer #charity
I think I have to bite the bullet and force the issue on professional fulltime care. I can do all sorts of stuff for her when she allows, but if she won't, and she doesn't, I can't keep her safe and healthy.
I may be a bit odd for a bit, and there'll be floods of tears, but I will be ok.
If you read this far, apologies for the dump. I feel better, even if you don't. 🤷♂️
Alzheimer's is an absolutely fucking shithouse disease. It not only steals you away from others, but from yourself. You become a ghost. A haunting reminder of what was. My wife was literally the best in her field in Australia, and one of the world's best. Today, her ghost is muttering, swearing, and more at hospital staff trying to help. Combative is the polite word they use.
Gah, I hit send early. My wife's been admitted to hospital and may not be returning home. They are looking for care options.
I have failed, and can't manage anymore.
Yes, I know I haven't *failed*, I've done my best, as much as possible, but that's what my fucking brain keeps telling me. It's almost like my brain has joined her clueless Qld rellies in condemning me.
We're getting there...
My wife had a seizure today. Alzheimer's related? 2nd this year. The last one nearly broke me. This time, I knew she wasn't dying in my arms. My phone (pro7) wouldn't dial 000 properly, bring up some kind of filter screen (new feature? Didn't happen last time). Fuck that right off please. I'm in a fucking panic, don't make it harder!
Her phone was there and worked, and ambos were soon with us
I've been feeling especially mortal since one of my best school friends died on Friday. The first of us. It's a real fucking reminder, old man. Yeah, you, BOOMER, you're fucking old, I don't care what you see in the mirror.
If you want to become a much older man, and you do, START TAKING FUCKING CARE OF YOURSELF.
Occasionally I toot to get stuff out of my system. You may have seen on my bio that I care for my wife, who has advanced early onset Alzheimer's (diag 2017). Unsurprisingly, stuff builds up inside, and I need to blurt it out sometimes. Today is one of those times.
This is not a cry for help. I'm depressed and upset, but am definitely no danger to myself or others. I struggle, but do cope.
Holiday days off work just mean full days on care. Or forcing myself out because I can't get her out of her own head and mine is suffering too. So I'm out. And feeling like shit about it when it's beautiful like this.
(Sorry forgot alt text: very rainy looking clouds but bold sun over a messy bend in a river where the sun reflects off the busy surface)
Sunak’s callousness: carer left without a lightbulb and he talks nonsense about investment | Vox Political
https://voxpoliticalonline.com/2023/03/21/sunaks-callousness-carer-left-without-a-lightbulb-and-he-talks-nonsense-about-investment/
#Rishi #Sunak #carer #lightbulb #investment #halved #social_care
'Our Own Coordinates - Poems About Dementia' was launched on Friday with readings from many of the poets involved.
It was an emotional, beautiful, brave and loving thing to witness.
The whole event can be viewed as and when you wish, here:
https://www.youtube.com/watch?v=komlW2_AE6s&feature=youtu.be
#dementia #DementiaAwareness #OurOwnCoordinates #Poetry #PoetryCommunity #PoetryReading #MindsAndVoices #Memory #PoetryLaunch #DementiaCarer #Empathy #Poems #Carer
#today I am back in #London taking care of my parents. We went to the new town hall square. This is about a 1 km walk each way but for them it was a massive trip out. It took them 40 mins to get ready. There was a craft fair on and they chose cup cakes to eat later. I found their choices interesting. I made them fish, bacon and corn....as a vegetarian it looked pretty tasty to me.It's been a good day. #carer #walthamstow #DoingMyBest
I’m a #carer for my daughter. She’s 18 yrs old and has #cerebralpalsy - she spends part of her time with me, part with her mum. She still attends full time #education which she loves. It’s always hard work - I love her v much - sometimes it’s *very* hard. This weekend is one of those times. Having to have someone (me) do all her personal & intimate care is absolutely not what I would have wanted for her, and it’s not what I imagined being a dad would be like either
Being a #carer for a loved one is fucking hard. It's like one thing after another and just when you think you're gonna get a break and recharge and get the self-care you promised yourself, something new happens and then you feel guilty as fuck because you feel selfish for wanting to focus on yourself and your needs for a minute. I don't understand why she can't just catch a break. She's been through everything. She's paid her dues. She deserves a break way more than me. Way more than anyone.
Sitting in the car appreciating the landscape outside.
Waiting for J as he’s having physio. #carer #everyCloud #nature
I’m excited to join my first online #carer support group tomorrow and learn from others about how to make caring more sustainable 🙌🏻
I have discovered something.
Since leaving work to become a carer/stay at home dad or whatever, I have begun to realise the way work acted as a buffer. It fitted in between my worries and my actual being. It became convenient to use work to mask how I operated as a person, to maybe distract myself with a work project, or to focus on work when something was wrong.
Now I don't have that, I have to learn how to face up to problems, knowing that they are, basically, me.
I’m severely #disabled by #ChronicIllness.
I have #SevereME #AdrenalDisease #Hypothyroidism #HyperParathyroidism #Endometriosis #Migraine #POTS/ #Dysautonomia #ChronicPain & more, topped off by #LongCovid. Hi #NEISvoid
Interests now include not being #exhausted, in #pain, or rejected by doctors for being too complex a patient. (Know good #doctors #GPs in #Melbourne taking pain patients?)
Need help with #housing #NDIS #GP #carer/ #caregiver & navigating the system. LMK!
1/
Where are severely ill people needing a #carer supposed to go if trying to escape #abuse and #neglect in #Melbourne, #Australia?
Maybe an SRS, group home, or #AgedCare where we’re treated even worse? #Safe? #Accessible? No, none I’ve found.
Nobody really listens anyway.
There are no places to go… I’d be glad if there were.
#Spoonie #SevereME #pwME #MECFS #LongCovid #NEISVoid #chronicIllness #NDIS #Disability
@mecfs
@chronicillness
@neisvoid
@disabilityjustice
25/
“Take Care of Yourself and Have a Life Outside of Caregiving
Please don’t make #caretaking your whole life. Make sure that you are doing the things that are restorative to you, and that make your life rewarding outside of me. And don’t feel guilty doing them! You deserve to have an identity outside of this illness, and you will be a better caregiver to me if you take care of yourself”
#caring #caregiver #caregivers #caregiving #carer #carers #longtermillness #chronicillness
This final toot in my thread's public as I think it's important and a wider point about public interest journalism:
I couldn't write the kind of pieces in this thread without compassionate, supportive editors and - crucially - people sharing their time and stories, not easy when you're going through hell. That includes people/families who shape my reporting, but aren't always quoted.
End of thread!
#humanrights #learningdisability #autism #fragilex #siblings #inclusion #socialcare #carer
I'm sharing some of my 2022 stories here, not to recreate the end of year round up on Twitter (I appreciate things are - happily - different here) but because they show what I cover and may help me link to people with the same interests.
Hope I've done it right - the first toot's public and the rest unlisted.
My first piece in 2022 was about why I chose to keep my mask on.
#humanrights #equality #disability #learningdisability #fragilex #siblings #carer #journalism
https://www.independent.co.uk/voices/disabled-masks-covid-restrictions-plan-b-b1998541.html
First Caturday post ever (you know you can filter for this type of thing :blobcatgiggle: ). Anyway, defs need rescuing from the 2 rescue cats who instead of sitting on the lap of the 93yo Nonna Bear they were intended to rescue, sit on the writing desk instead. #caturday #writing #writerscats #writingcommunity #rescuecat #carer #writer
Some new faces here, so a quick intro again.
Hi!
I'm a journalist, author and editor.
My book Made Possible is influenced by my sister Raana (pictured!): an anthology on success, by people with learning disabilities, yep SUCCESS.
And I chair the v cool charity Sibs, helping people who've grown up with disabled brothers/sisters.
Interests: #LearningDisability #fragilex #autism #diversity #equality #inclusion #humanrights #healthinequality #carer #siblings
More: http://sabasalman.com
(Continued…) Most importantly I am trying to save to get away from my #abusive environment.
I’ve been trying for years and can’t take it anymore. It has to work this time. My health can’t get any better here and I keep declining.
If you’re able to give, any amount big or small will be helpful. Or if you can help in a practical way like recommending a #carer or offering #housing (Got a spare room? Know anyone who has a space for rent?)
#BuyMeCoffee has platform & Visa fees (for me, all #crowdfunding does) but #Australians/those with an $AUD account can use #Beem app free (both sides).
International:
https://buymeacoffee.com/halcionandon
Australians: (Beem or Buy Me A Coffee).
I’m @halcionandon on Beem.
See first post in thread for more details.
PLEASE boost.
I used day 2 of the #ucuStrike to be interviewed for an important research project for those young people and their families who have gone through children’s health, education and social care assessments (we have done the lot!) The #SEND system is broken. The consequences are real and affect lives irreversibly. After 2 hours with the lovely interviewer it took me an hour to reset and regroup but I am so glad I did it and so hope things will change. #carer #disability
I’m a full time #carer so I’m generally having to fight for things that should be universal rights, which takes up a surprising amount of time - and all other interests are squeezed around or related to that!
Work is all things #LivedExperience perspectives and especially getting these to shape research.
Life in the gaps is mostly being a totally novice #smallholder, a guardian of many animals and a pretty decent cocktail maker.
As an #autistic, #neurodivergent, and #disabled #carer, I sometimes (perhaps often) feel guilty about the amount of alone time that I need (i.e., not in the same room as my Mum, who I care for and love deeply).
I try to remember that the quality of the time together is also key.
I’m struggling to stay afloat.
HELP PLEASE
I’d be grateful if you could #boost this, give if you can, or help in a practical way say if you know a good #GP taking patients in #Melbourne #Australia or an #advocate, #carer or #housing.
Any contribution is VERY appreciated!
WHY
I have multiple extremely disabling & worsening health conditions (including #severeME, #AdrenalDisease, #Migraines, #ChronicPain, #LongCovid) while trying to ESCAPE an #ABUSIVE ENVIRONMENT, find affordable #housing, a #carer/#caregiver, #healthcare, appeal #abusive #CaseManagement with an #advocate, get #NDIS, & the list goes on. It’ll be a long, difficult, expensive process but I’m determined to get out & live my life.
Unsure how to itemise this!
Backstory on birdsite @halcionandon
DONATE
#BuyMeACoffee has platform & Visa fees (for me).
#Australians can use #Beem free (both sides)
International:
https://buymeacoffee.com/halcionandon
Australians: (Beem or Buy Me A Coffee).
https://www.beem.com.au
I’m @halcionandon on Beem.
Sign up, attach card, send $ FREE.
Why Buy Me A Coffee? Meant to use it for #writing but my #health & situation deteriorated so I can’t write anymore. 🙁
Never done crowdfunding before & feel weird asking for money.
Thank you
#MutualAid #DisabilityCrowdfund #chronicillness #NEISvoid #pwme #mecfs #AbuseSurvivor
TL; DR
Crowdfunding to escape abuse.
DONATE
International: https://buymeacoffee.com/halcionandon
Australia: https://www.beem.com.au
User @halcionandon
Verifying/linking your website to your profile is ace . If your profile is filled out & you have the green tick in the website section, it sends good vibes (to me at least!) that you really are an #author #writer #booklover #writingcommunity #journalist #sustainability #climate #permaculture #plant #bee or #carer person etc. There are some easy to follow instructions about how to get the #Mastodon verification here https://www.jessicabkelly.com/adding-a-verified-website-running-wordpress-to-mastodon/ but if you know an even better explanation, please reply so it can be shared.
#Introduction time.
This isn’t great because I’m ill but I’d like to find my people here. Edit: I like abled people too! :)
I’m #Disabled by #ChronicIllness which is pretty bad at the moment. I have
#SevereME #AdrenalDisease #Hypothyroidism #HyperParathyroidism #Endometriosis #Migraine #POTS / #Dysautonomia #ChronicPain & more, all topped off with #LongCovid. Hello #NEISvoid.
My interests now include not being deathly exhausted, in pain, or being rejected by doctors for being too complex a patient. (If you know good #doctors in #Melbourne #Australia still taking patients, let me know! I’ve tried contacting literally hundreds. Yes tried NIIM, wary now.)
I’m also looking for an #advocate to help with #accommodation #NDIS getting a good #GP #carer / #caregiver & navigating the system. I can’t find good healthcare & running out of energy for this so I’m writing before I can’t reach out. Happened before & hell it’s scary to have no energy to even open your eyes. For months.
Oh, also trying to escape #abuse. Didn’t want to say that because I’ll wear it forever but hi.
Normally interests include #Auspol #healthcare #science #MedicalResearch #MMT #CulturalStudies #philosophy #film #FilmPhotography #music #writing & remembering what I’m interested in… Being sick & in survival mode ruins your leisure time.
https://www.twitter.com/Halcionandon for backstory.
It’s nice to be here.
Hope this place stays cosy.
(More tags: #MECFS #PwME #PwLC #MyalgicE #MyalgicEncephalomyelitis #Spoonie)
I suppose I should do one of those #introduction posts.
I'm Piers, I'm a #FolkSinger and #carer. I'm also a recovering #sysAdmin and #programmer (recovery wasn't exactly voluntary, but RSI screwed up those career paths).
You'll find me singing most Friday nights at https://youtube.com/pierscawley/live, or at my infrequently updated blog https://bofh.org.uk/
I'm into #FolkSongs, #DwarfFortress, #Pratchett, #Cookery, #UnaccompaniedSinging, #photography , #looping and #ttrpgs in no particular order.
So here's a quick #introduction - I'm a java developer who works mainly on open source #geospatial software such as #geoserver.
I am also a moderator on gis.stackexchange.
In my spare time I help out at a #repairCafe fixing broken electrical items. I'm also a full time #carer and struggle with #depression and #chronicPain.
To add to my stress I'm in the process of moving to #Glasgow
