Americas 66 million (pre-COVID-19) family caregivers people caring for loved ones with complex, chronic and ongoing care needs are thrust into their role with no training, no background and no support infrastructure. Preposterously, most feel like the only one on earth.
Why? Because caregiving is the modern-day mystique.
Betty Friedans classic 1963 book The Feminine Mystique revealed that many homemakers were suffering in silence, weighed down with responsibilities they were expected to love. It sparked a revolution of truth-telling and collective action. Todays COVID-19 crisis might just spark the same revolution with caretaking.
Like the feminine mystique, the caregiver mystique thrives in silence and shame. Family caregivers are socialized to think that caring for aging parents and sick loved ones is a family duty that comes naturally and is filled with love and an abundance of patience.
For families with loved ones who are vulnerable, the coronavirus threat is absolutely terrifying.
I know what its like to be a family caregiver. I was one for my mom for 28 years due to her Multiple Sclerosis. There were many challenging moments, but none harder than a winter weekend in 2016. Stem cell replacement therapy had been my mothers Holy Grail for years and on a chilly Friday afternoon, she got a shot of stem cells directly into her spinal fluid. We could almost hear trumpets.
But at the end of the needle was a tiny droplet of strep infection, likely the result of a nurse or doctor who accidentally spit while chatting with us. It gave my mom bacterial meningitis. When she woke up that Saturday, her body was having convulsions and she was murmuring strange words like she was possessed. Her doctor said I needed to keep her alive for the next 48 hours until I could bring her to the hospital. I did and worked from her side in the hospital on Monday. On Tuesday, I went back to the office and completely downplayed the traumatic experience wed been through.
We are committed to reliable reporting on the risks of the coronavirus and steps you can take to benefit you, your loved ones and others in your community. Read Next Avenues Coronavirus Coverage.
My nightmare weekend, and the silence that followed, is a version of what so many family caregivers are experiencing right now.
For families with loved ones who are vulnerable, the coronavirus threat is absolutely terrifying. The family caregivers are responsible for preparing their loved ones with back-up meds and supplies, keeping them safe from the virus and, in the case of diagnosis, scrambling to make the right decisions to keep them alive.
At my caregiving concierge company, Wellthy which grew out of my experience caring for my mom were hearing stories of families navigating hospice decisions, pulling loved ones out of long-term care, and older adults with dementia who think the family is on an extended spring break. (Forgetfulness is bliss in a pandemic!)
But the pandemic is also leading family caregivers to admit that they cant handle all of these responsibilities on their own.
Over the last several weeks, employees have had to come out to their employers as they juggle their work responsibilities with caregiving crises at home.
These families need support. They need solidarity. And they need structural transformation.
Caregiving is really tough. Family caregivers are squeezed, and the health care system expects them to figure it all out. Unlike becoming a parent, there are no step-by-step guides for the introduction into caregiving. Mostly, caregivers fall into their role suddenly. And every caregiving path is long, windy and different.
Caregivers must figure out how to navigate complicated insurance questions, administer medications, lift someone who weighs as much or more than they do, bathe correctly, buy the right equipment and supplies, watch for potentially dangerous symptoms like the development of a pressure wound, and, now, protect loved ones from a global devastating virus.
Sadly, neither the health care system nor our countrys leaders have acknowledged caregivers critical and quiet role behind closed doors, protecting loved ones, avoiding hospitalization and preventing death.
Yet family caregivers are critical in preventing the spread of the virus and improving the spiraling diagnosis and death rate.
This all could be different, though.
Imagine a world where families had a local caregiving agency staffed with warm, informed and empathetic experts to help navigate, advocate and set up the right care for each family based on their unique needs.
Imagine that each state had a robust and well-funded Department of Aging, renamed Department of Caregiving, with a team of social workers supported by a robust software system that tracks and recommends, in real time, local and state resources, services and programs.
Imagine a society in which we prioritized preventative care in the form of proactive support programs like in-home aides, therapists, community groups and social activities to provide physical and emotional stimulation to all our citizens.
Imagine a world where the heartache that people experience over the weekend isnt considered a shame to be swallowed on Monday, but a natural human need to be met and a set of skills to be nurtured.
In the time of a pandemic, especially, lets recognize, celebrate and, most importantly, help our family caregivers.
Lindsay Jurist-Rosner is founder and CEO of Wellthy, a caregiving concierge service supporting families with complex and ongoing care needs.
Next Avenue brings you stories that are inspiring and change lives. We know that because we hear it from our readers every single day. One reader says,
"Every time I read a post, I feel like I'm able to take a single, clear lesson away from it, which is why I think it's so great."
Your generous donation will help us continue to bring you the information you care about. What story will you help make possible?
Next Avenue - 2020. All rights reserved.
See the article here:
OPINION: COVID-19 Reveals the Caregiving Mystique - Next Avenue
- Breast Cancer Is Most Common Cancer In India, 1.38 Million Cases Diagnosed Annually. Know Estimated Incidence By 2030 - ABP Live - November 26th, 2023
- What Is Amyloidosis? All About The Rare Disease That Pervez Musharraf Suffered From - ABP Live - February 8th, 2023
- Autophagic death of neural stem cells mediates chronic stress-induced ... - November 7th, 2022
- Programmed cell death - Wikipedia - November 7th, 2022
- Hematopoietic Stem Cells | Hematopoiesis | Properties & Functions - September 4th, 2022
- Canadian Blood Services Stem Cells for Life - September 4th, 2022
- Devastation over death of schoolgirl, 11, who hoped she was beating cancer - Leicestershire Live - September 4th, 2022
- From optimized stem cell transplants to CAR T cell therapy: Advancing options for cancer, HIV and more - City of Hope - September 4th, 2022
- Scientists unlock the key to immortality in jellyfish - Syfy - September 4th, 2022
- Forge Biologics Reports Positive Clinical Data on Brain Development and Motor Function from the RESKUE Novel Phase 1/2 Gene Therapy Trial in Patients... - September 4th, 2022
- Menin Inhibitors Have Potential to Become the Next Class of Targeted Therapy in AML - Targeted Oncology - September 4th, 2022
- Wanted murder suspect John Belfield believed to still be in the UK as two more arrested over death of Thomas Campbell - The Manc - September 4th, 2022
- Next-day manufacture of a novel anti-CD19 CAR-T therapy for B-cell acute lymphoblastic leukemia: first-in-human clinical study | Blood Cancer Journal... - July 8th, 2022
- Can minds persist when they are cut off from the world? - Livescience.com - July 8th, 2022
- Black Adolescent Young Adults With AML Have Worse Outcomes Vs White Population - Cancer Network - July 8th, 2022
- Akari Therapeutics Announces First Patient to Complete Course of Treatment in the Phase III Part A Clinical Trial of Investigational Nomacopan in... - July 8th, 2022
- How abortion ruling could affect IVF and embryonic research - The Almanac Online - July 8th, 2022
- This Morning viewers 'in tears' after boy meets donor who saved his life - Devon Live - July 8th, 2022
- Alpena detective: 'Good people out there' | News, Sports, Jobs - Alpena News - July 8th, 2022
- 'I miss my best friend': Five-year-old runs 10k to honour girl who died from rare brain tumour - Teesside Live - July 8th, 2022
- Humanigen Announces Peer-Reviewed Publication in Thorax Supporting Early Treatment of Hospitalized COVID-19 Patients with Lenzilumab Guided by... - July 8th, 2022
- Novartis AG, AstraZeneca Plc, and Pfizer Inc Among Leading Companies in the Thyroid Cancer Pipeline Products Market | Globaldata Plc - Yahoo Finance - July 8th, 2022
- A New Strategy Could Turn the Tide in Stem Cell GVHD - Medical Device and Diagnostics Industry - January 17th, 2022
- Vertex type 1 diabetes vs stem cell therapy - The Boar - January 17th, 2022
- Two-Year OS Doubles for Patients With Philadelphia-Positive Relapsed ALL After HSCT - AJMC.com Managed Markets Network - January 17th, 2022
- Nowakowski Considers CD19 Therapy in Transplant-Ineligible DLBCL - Targeted Oncology - January 17th, 2022
- Psaki demolishes Doocy with stats as he tries to claim covid now an illness of the vaccinated - newsconcerns - January 17th, 2022
- Doctors and Researchers Probe How COVID-19 Attacks the Heart - The Scientist - January 17th, 2022
- Who does donated blood that's direly needed help? - WTOP - January 17th, 2022
- Places Where Omicron is Most Contagious Eat This Not That - Eat This, Not That - January 17th, 2022
- UHN and U of T receive $24-million federal grant for transplant research - News@UofT - January 17th, 2022
- Glycyrrhizic acid ameliorates submandibular gland oxidative stress, autophagy and vascular dysfunction in rat model of type 1 diabetes | Scientific... - January 17th, 2022
- Stem cells in cancer therapy: opportunities and challenges - January 1st, 2022
- Life After Brain Death: Is the Body Still 'Alive'? | Live ... - January 1st, 2022
- Autologous Adult Stem Cells in the Treatment of Stroke | SCCAA - Dove Medical Press - January 1st, 2022
- Stem Cell Mimicking Nanoencapsulation for Targeting Arthrit | IJN - Dove Medical Press - January 1st, 2022
- Cellular Therapies Fill Unmet Needs in R/R Multiple Myeloma - Targeted Oncology - January 1st, 2022
- Upregulated expression of actin-like 6A is a risk factor | CMAR - Dove Medical Press - January 1st, 2022
- COVID-19 Takes a Toll on People with Blood Cancers and Disorders - Cancer Health Treatment News - January 1st, 2022
- Mental health disorders and heart diseases - Rising Kashmir - January 1st, 2022
- Research breakthrough could mean better treatment for patients with most deadly form of brain tumor - EurekAlert - October 26th, 2021
- European Commission Approves Merck's KEYTRUDA (pembrolizumab) Plus Chemotherapy as Treatment for Certain Patients With Locally Recurrent Unresectable... - October 26th, 2021
- European Commission Selects Humanigen's Lenzilumab as One of the 10 Most Promising Treatments for COVID-19 - Galveston County Daily News - October 26th, 2021
- Everything You Need To Know About COVID Booster Shots - Colorado Times Recorder - October 26th, 2021
- Stem cells and their role in lung transplant rejection - Michigan Medicine - October 5th, 2021
- Losing Your Hair? You Might Blame the Great Stem Cell Escape. - The New York Times - October 5th, 2021
- Will humans ever be immortal? - Livescience.com - October 5th, 2021
- Healthcare Researchers Are Putting HUMAN Immune Systems In Pigs To Study Illnesses-Here's The Tech Behind It - Tech Times - October 5th, 2021
- Why Bezos, Musk, Page and other billionaires want to live forever - New York Post - October 5th, 2021
- Faster healing of wounds can decrease pain and suffering and save lives - ABC 12 News - October 5th, 2021
- U.S. FDA Approves Kite's Tecartus as the First and Only Car T for Adults With Relapsed or Refractory B-cell Acute Lymphoblastic Leukemia - Business... - October 5th, 2021
- Skeletons' broken clavicles tell a centuries-old tale of humans and horses - Massive Science - October 5th, 2021
- Environmental Factor - August 2021: Extramural Papers of the Month - Environmental Factor Newsletter - August 4th, 2021
- Role of traumatic brain injury in the development of glioma | JIR - Dove Medical Press - August 4th, 2021
- Targeted Therapeutics Market: Increase in Incidence of Cancer to Drive Global Market - BioSpace - August 4th, 2021
- Accumulation of Regulatory T Cells in Triple Negative Breast Cancer Ca | CMAR - Dove Medical Press - August 4th, 2021
- Novel CAR-T Cell Therapy Produces Early and Deep Responses in Certain Patients with Multiple Myeloma - Curetoday.com - June 7th, 2021
- Autophagy suppresses the formation of hepatocyte-derived cancer-initiating ductular progenitor cells in the liver - Science Advances - June 7th, 2021
- Cancer research: New advances and innovations - Medical News Today - June 7th, 2021
- Fulvestrant Alone Found to be Superior to Venetoclax/Fulvestrant Combo in ER+/HER2- Breast Cancer - Targeted Oncology - June 7th, 2021
- Merck's KEYTRUDA Given After Surgery Reduced the Risk of Disease Recurrence or Death by 32% Versus Placebo as Adjuvant Therapy in Patients With Renal... - June 7th, 2021
- Stem cell study illuminates the cause of an inherited heart disorder | Penn Today - Penn Today - February 14th, 2021
- The race to treat a rare, fatal syndrome may help others with common disorders like diabetes - Science Magazine - February 14th, 2021
- Jasper Therapeutics Announces Positive Data from Phase 1 Clinical Trial of JSP191 as Targeted Stem Cell Conditioning Agent in Patients with... - February 14th, 2021
- The Very First Signs of an Immune Response Have Been Filmed in a Developing Embryo - ScienceAlert - February 14th, 2021
- Arlo's Army needs stem cell donor as mum begs for help to save three-year-old's life - Glasgow Live - February 14th, 2021
- Astellas and Seagen Announce Phase 3 Trial Results Demonstrating Survival Advantage of PADCEV (enfortumab vedotin-ejfv) in Patients with Previously... - February 14th, 2021
- [Full text] Successful Use of Nivolumab in a Patient with Head and Neck Cancer Aft | OTT - Dove Medical Press - February 14th, 2021
- The drug treatments offering the best hope of a way out of the Covid crisis - Telegraph.co.uk - February 14th, 2021
- In the war against Covid, an arsenal of drugs is on the way - Telegraph.co.uk - February 14th, 2021
- Kat Wests husband, Jeff West, sentenced to 16 years in wifes death - AL.com - February 9th, 2021
- Harnessing the Potential of Cell and Gene Therapy - OncLive - February 9th, 2021
- I Survived Cancer, and Then I Needed to Remember How to Live - The Atlantic - February 9th, 2021
- [Full text] Higher Red Blood Cell Distribution Width is a Poor Prognostic Factor f | CMAR - Dove Medical Press - February 9th, 2021
- West Belfast woman to be remembered in special TV documentary - Belfast Live - January 29th, 2021
- UTV documentary tells of young Belfast woman's lasting legacy to promote stem cell donation - The Irish News - January 29th, 2021
- L-MIND Trial Results Show CD19 Antibody Is Reasonable in R/R DLBCL - Targeted Oncology - January 29th, 2021
- Vertex Announces FDA Clearance of Investigational New Drug (IND) Application for VX-880, a Novel Cell Therapy for the Treatment of Type 1 Diabetes... - January 29th, 2021
- If I Have Cancer, Dementia or MS, Should I Get the Covid Vaccine? - Kaiser Health News - January 29th, 2021
- Experimental taphonomy of organelles and the fossil record of early eukaryote evolution - Science Advances - January 29th, 2021