Discover and read the best of Twitter Threads about #Caregivers
Most recents (24)
Warning ⚠️ ⛔️ : Uncomfortable Thread 🪡
My tweets lately have focused on my daughter’s #healthcare at @SanfordHealth & our struggle to access appropriate & compassion care where her agency is not taken away. I know the threads my be uncomfortable for some particularly if you 1
My tweets lately have focused on my daughter’s #healthcare at @SanfordHealth & our struggle to access appropriate & compassion care where her agency is not taken away. I know the threads my be uncomfortable for some particularly if you 1
are a #medical professional. I am aware that many are thinking 💭‘what’s the back story’, ‘something they did caused this no #medical facility or #medical #professional would partake in this’. I get that. There IS a back story. A child at 2 wks having her 1st #hereditary 2
#pancreatitis flare. In 1st grade undergoing her 1st #transplant. In 6th grade undergoing 2nd #transplant. Complications, no real follow up. Complications being ignored. Physicians both on #transplant team as well as others questioning her symptoms, her #pain. Dismissing & 3
During his State of the Union Address, President #Biden announced his 4-part Unity Agenda. It includes “Supporting America’s Veterans and Their Families, Caregivers, and Survivors.”
whitehouse.gov/briefing-room/…) #veterans #SOTU #SOTU2023
whitehouse.gov/briefing-room/…) #veterans #SOTU #SOTU2023
Last year the #Biden Administration expanded benefits for #veterans, #caregivers & survivors. In 2022, @DeptVetAffairs processed an all-time record 1.7 million @VAVetBenefits claims & delivered $128 billion in earned benefits to 6.1 million veterans & survivors. #POTUS 
We are about to begin our weekly news briefing for ethnic media. The topic is: A Pandemic of Older Americans. Joining us is @SusanDeMarois @DrTomasAragon @ActonAna @donnabentonphd and Jessica Lehman from Senior and Disability Action #ethnicmedia #CovidIsNotOver
@DrTomasAragon explains we have seen an increase in viral infections over the past few weeks, early compared to other years. RSV infections have peaked and Influenza is now going up.
@DrTomasAragon "You want to think ahead" on Covid. There's a lot of transmission at the moment in over 90% of counties in California #ethnicmedia
Almost 25 years ago I entered the world 🌍 of #raredisease when 1st my husband was dx w #PRSS1 & then our children.
What I’ve learned is #HealthcareInAmerica is brutal & often #harms those most in need.
The system is broken.
There is no disguising it.
I believe that our 1
What I’ve learned is #HealthcareInAmerica is brutal & often #harms those most in need.
The system is broken.
There is no disguising it.
I believe that our 1
#Healthcare system truly only benefits a small populous; individuals that are mainly #healthy & don’t belong to a marginalized group.
There are monumental system issues that need to be addressed that impact #medicalprofessionals ability to provide necessary 2
There are monumental system issues that need to be addressed that impact #medicalprofessionals ability to provide necessary 2
care. I understand that. I believe that #patients, #caregivers #medicalprofessionals need to work in collaboration to push back on the systemic issues that plague the system. I absolutely can give & find grace in many situations.
What I have no time for is the void of 3/
What I have no time for is the void of 3/
I continually see research papers and presentations given on how #childhood #trauma relates to likelihood of #chronicpain.
While I do not dismiss this may be a factor, I am very frustrated at the lack of introspection by many #physicians where #medicaltrauma due to care that 1/
While I do not dismiss this may be a factor, I am very frustrated at the lack of introspection by many #physicians where #medicaltrauma due to care that 1/
#Thread
A personal #ActuallyAutistic perspective on getting urgent #healthcare for someone in a medical emergency, and being an autistic ‘#carer’, or ‘caregiver’.
#autism
1/
A personal #ActuallyAutistic perspective on getting urgent #healthcare for someone in a medical emergency, and being an autistic ‘#carer’, or ‘caregiver’.
#autism
1/
There’s a liminal state between life and death I encountered once during childbirth.
It didn’t feel survivable, but it was. And when it was over I lay there exhausted like someone who’d been swept out to sea, then washed back in on the tide.
2/
It didn’t feel survivable, but it was. And when it was over I lay there exhausted like someone who’d been swept out to sea, then washed back in on the tide.
2/
Decades later my partner had sudden respiratory failure.
I could feel him slipping away.
His grip on life depended on me finding the right words to persuade the 999 operator how ill he was.
Even then they could not get there quickly enough, so I bundled him into the car.
3/
I could feel him slipping away.
His grip on life depended on me finding the right words to persuade the 999 operator how ill he was.
Even then they could not get there quickly enough, so I bundled him into the car.
3/
#mnleg #mngov agreement on Hero Pay/Frontline worker recognizes the 600k+ Minnesotans who put their own lives at risk to keep all basic activities running; here are some key details for LTC #thread
There's always a give & take in the #Mnleg process; final text provides $500m in bonuses for workers employed 120 hrs+ during 3/15 to 6/30/21 revisor.mn.gov/bills/text.php…
Workers with direct COVID-19 patient care must have incomes under $350k (married)/$175k (single); all others have incomes under $185k (married)/$85k (single) #thread
Looking forward to what should be an interesting conversation on the impact #UniversalBasicIncome could have on how we may rethink the world of work - and, in particular, the work done by 🚺 #LondonMetResearch
Dr @JessieJWL opens her presentation nothing that #UBI is still very much a "hot topic" amongst policymakers, particularly on its effectiveness on improving women's working lives #LondonMetResearch
Bustillos defines #UBI as "a regular cash income paid to all on an individual basis, without means test or work recruitment". Also notes it has been called a "citizen's wage", "existence income" or "guaranteed universal subsidy" #LondonMetResearch
@ibdgirl76 What I really struggle w & it’s not just re the lack of care for those in pain & stigma they face, overall the system & many (not all) inds wi not set up to address issuers #patients & #caregivers have re care. There is literally no place to go. Yes, there are 1/
@ibdgirl76 #patient representatives but they are there essentially to watch out for health facility. File a concern & most times you are not part of the process, nor do you know the outcome. There literally is a lack of protection for #patients. Maybe some clinics or healthcare 2/
@ibdgirl76 facilities better than others but often #patients are left w no #voice. I understand, but in NO way condone aggression, physical harm, threats or name calling to #medicalpersonnel. They deserve a safe place to work, yet I understand the rise of these incidences 3/
I was minding my business last night, reading tweets about the Bills vs Chiefs game when the below tweet caught my attention.
It's been a while since I've done a faith-based Twitter thread, but Greg Locke's comments have compelled me to speak up. Put on your seatbelts! 🧵 1/14
It's been a while since I've done a faith-based Twitter thread, but Greg Locke's comments have compelled me to speak up. Put on your seatbelts! 🧵 1/14
Greg Locke’s comments are the very reason why I started @AutismFaithNet. His statements are HIGHLY OFFENSIVE to me as a Christian AND mom of TWO sons with autism, with one that also has a rare form of epilepsy. 2/14
My boys mean EVERYTHING to me. It would be easy to write a post about how amazing they are, assuring everyone that neither one of them has a demon. But I think it’s more important to highlight another point… 3/14
🗣️Reminder, we'll be starting our conversation on the impact of the #Omicron surge on family #caregivers in 10 mins! Follow us @EthnicMediaSvc to join the discussion. @CalAging @blackvoicenews
Welcome to this important conversation about the impact of the #Omicron surge on family caregivers and the importance of #vaccinations. We open with a prayer and to give thanks for those who bring us together to hear these stories.
The number of children infected with #Covid-19 is less among all other age group in the global population. How about the #psychological, #social impact in on #children? Researches suggests social and psychological impact in this group were mostly severe.
#PathologizingPain
#ChronicPain is the most prevalent health issue for Americans, yet, there is a lack of acknowledgment of the impact of pain on individuals QoL as well as access to quality options available. The last several years we have seen a proliferation of 1/
#ChronicPain is the most prevalent health issue for Americans, yet, there is a lack of acknowledgment of the impact of pain on individuals QoL as well as access to quality options available. The last several years we have seen a proliferation of 1/
psychological strategies be touted as solutions for both #chronicpain & #acutepain. This has been fostered by the #CDC guidelines as well as various independent groups. As an individual who works in the area of mental health I am alarmed at the amount of #gaslighting that 2/
to those with #chronicpain & the belief by many physicians & professionals that psychological strategies will alleviate #chronicpain as a stand-alone strategy. I DO believe that psychological strategies CAN be of benefit addressing pain, but, how #pain is being #pathologized 3/
I am perplexed how #RogerChou can not only sit on the #CDCOWG but is a lead author. He recused himself at the #CDC meeting due to #COIs bc of his work as ‘expert witness’ in Purdue litigation but is lead author 🤷🏻♀️ @CDCDirector @CDCInjury could you explain how this is ethical? 1/
Listening to the #CDCOWG from perspective of #caregiver & advocate was disheartening. For me @CDCDirector assurances that #patients voices were heard was meaningless. She may say that we’ve been heard but then how are so many feeling as we haven’t been? Why are the #legislation 2
I can’t remember who said this, so I apologize, but the app -lication of #healthcare is not the answer to magically transforming the system. So many applications, portals, surveys…. They can assist but first a true cultural shift must be made in #healthcare. For this to be 1/
those working in system need to be supported. Currently our #healthcare system lays the burdens of the broken system at feet of #patients, #caregivers & healthcare professionals. So much must change. It must not be a system based on vulturism (I know not a word) of entities 2/
focused on making millions of dollars of the backs of those who are vulnerable. We have allowed this, we must change this. One persons voice I appreciate is @RepKatiePorter but others must understand the harm occurring. Our system is not functional. For some reason those 3/
I posted this yesterday with parents permission. I wanted to expand on this video a bit.
1st, a big part of me feels very uncomfortable with posting. Just like a big part of me felt uncomfortable about posting about my kids experience (w permission). It feels exploitive. 1/
1st, a big part of me feels very uncomfortable with posting. Just like a big part of me felt uncomfortable about posting about my kids experience (w permission). It feels exploitive. 1/
Yet, when I share experiences of #caregivers & or #patients (who had given me permission to share) those experiences were/are often questioned or I’ve been excused of exaggerating. Or like many others called a #shill for #Pharmaceutical companies. I am a mother, who 2/
witnessed first hand the harms of pain ignored, not treated, under treated or labeled as #psychosomatic. I remember very vividly how my kids would arch their backs in pain & scream. How helpless I felt. I have seen the repercussions of this #harm & am absolutely obsessed 3/
Today, our family followed through on the decision to move dad to a long-term facility in Mississauga. He's been on a dementia journey for about 8 years alongside a cancer one that has him also receiving palliative care. /2
The script flipped for me was a few years back when his conscientious nature had him scaling an aluminum ladder in a rainstorm to check that the eaves were clear ensuring we wouldn't have any flooding. Both his physical and mental capacity at the time put him at risk. /3
1/🧵 Imagine 2 people, madly in love & married 28 years, in an impossible situation, both lives on the line & separated by different hospitals. Then imagine 2 sets of #nurses & #doctors separately determined to overcome ⛰ of obstacles…
(shared w perm)
#MedTwitter #NurseTwitter
(shared w perm)
#MedTwitter #NurseTwitter
2/ Last night this is what happened…
NOTE: the family wants to share their story to offer a glimpse of love ❤️ on all levels
For 3 years, Mark took care of Sharon, his #bride, as she battled breast #cancer. It relentlessly spread to her bones. He never stopped giving.
NOTE: the family wants to share their story to offer a glimpse of love ❤️ on all levels
For 3 years, Mark took care of Sharon, his #bride, as she battled breast #cancer. It relentlessly spread to her bones. He never stopped giving.
3/ She could tell he was spent and getting sick himself. “Mark, let’s get you to the doctor!” “Not until you are well, Sharon.” He remained laser focused on her every need. As she became weaker, he took her to get admitted yesterday.
#marriage #life #caregivers
#marriage #life #caregivers
#PatientCentric care, #PtExperience #Tokenism, #HoldingSpace #WeAreBetterTogether ⚠️ long thread.
Recently I attended a meeting of an organization whose focus is in improving #healthcare. This is a highly respected organization. One ☝🏼 of their founding principles is the 1/
Recently I attended a meeting of an organization whose focus is in improving #healthcare. This is a highly respected organization. One ☝🏼 of their founding principles is the 1/
engagement of various #stakeholders including #patients and #caregivers. This was not the 1st meeting of this org. I have attended. I walked away from this particular meeting sad, frustrated & a bit angry. The topic was on #patientcentric care. A topic that is near & dear 2/
to me. The caliber of individuals involved was spectacular; academics, researchers, consultants. As I scrolled through participants as well as listened to the conversation and watched the comments come across the screen I was enthralled with the dialogue however 3/
I’ve continued to see a divide in #pain community, a lack of support as well as pretty blatant attacks. My position: none of us speak for the entire community. We all have are personal stories. Each is unique and sacred. Pain occurs on a continuum and there are 1/
a variety of variables involved. As a parent what I want is a wider variety of options that is paid by insurance, I want voices to be heard, I want individual care, transparency and partnership with physicians & HCP. I want accessibility in the community I live 2/
I want a coordinated approach that is patient and family centric that takes into account barriers of treatments. When I say I want a variety of strategies & treatments I absolutely mean it. My kids have utilized ACT and CBT in a variety of settings. Sadly in only 3/
Doing this is (as a very wise hospice doctor advised me not quite 6 years ago) like piloting the Memphis Belle. The plane gets shot up, your crew takes on unpredictable injuries, resources are consumed, difficulties mount. But you've got to pilot it to the best landing you can.
When I learn of someone who is giving care to a person living with #dementia (#Alzheimers is but 1 of a 100+ causes) I tell them it's 1/3 caregiving skills, 1/3 the unique progression of the person living with dementia's illness & 1/3 luck. 2/3rds are not in a caregiver's control
What gets you through years or even decades of this? Curiosity, a willingness to learn, formulating theories or hypotheses, trial & error, flexibility, patience, resilience, some comfort with not being in control, a good sense of humor & sheer tenacity. And adjusting on the fly.
Excited to share this new preprint biorxiv.org/cgi/content/sh…
Is #caffeinated #soda bad for children's #brain development? If so, which specific intellectual capacity is affected? It is a question that many parents and caregivers are asking daily but there is no clear guideline 1/n
Is #caffeinated #soda bad for children's #brain development? If so, which specific intellectual capacity is affected? It is a question that many parents and caregivers are asking daily but there is no clear guideline 1/n
Using the #ABCDstudy data, we addressed the question in this work, “Daily caffeinated soda intake is associated with impaired working memory and higher impulsivity in children” 2/n
Some soda contains #caffeine (Coca Cola, Mountain Dew, Dr. Pepper, etc). The physical side effects of caffeinated soda such as obesity have been well documented and the short-term effects of caffeine consumption (mostly in adults) are well known. 3/n
1/ Q: What can I do to support a #caregiver?
A: Caregivers need a back-up plan, a much deserved #recharge, and financial support.
A: Caregivers need a back-up plan, a much deserved #recharge, and financial support.
2/ Caregiving during the #COVID pandemic has been further strained by disrupted child care, social isolation, unemployment, and a contagious & debilitating virus. If the caregivers fall, so does everything else.
3/ Caregivers come in many forms & are the backbone of daily life for millions of Americans. To anyone in a #caregiving role: WE. SEE. YOU. ❤️
The days are long, the worries are real, & the options in the era of #COVID19 are limited.
The days are long, the worries are real, & the options in the era of #COVID19 are limited.
This is the #DemPartyPlatform for 2020.This section is called:Guaranteeing a Secure & Dignified Retirement
Only one party has a specific plan for ensuring seniors will not retire to poverty & uncertainty..the other can’t wait to cut &slash to pay for tax cuts for the wealthy 1/8
Only one party has a specific plan for ensuring seniors will not retire to poverty & uncertainty..the other can’t wait to cut &slash to pay for tax cuts for the wealthy 1/8
#Democrats are proud to be the party that advocates retirement security for all. We are the party that created and strengthened Social Security, and defended public and private retirement plans that provide a decent monthly income. 2/9 #DemPartyPlatform #DignifiedRetirement
#Democrats are fighting to make sure that all workers have the ability to save at work for emergencies and for retirement. 3/9 #DemPartyPlatform #DignifiedRetirement
