This week marks two years since the COVID-19 pandemic was declared a national emergency, on March 13, 2020. In the two years since, caregivers have struggled with countless crises, from keeping their loved ones safe at home, to providing care while working remotely, to losing access to already lacking supports and services. But there has also been more attention paid to care than ever, and caregivers are more empowered to speak out because people in power are actually listening.
To mark this difficult anniversary, we asked our Care Fellows to tell us how the pandemic has affected, and continues to affect their ability to give care, and what ongoing and new struggles they are facing two years in to this global health and care crisis.
What new or heightened financial, logistical and/or emotional challenges are you facing now? If inflation has impacted you, how so?
Due to COVID, it is difficult to find available caregivers to fill in when needed. Due to inflation, groceries and common health care essentials such as diapers are more and more expensive. No relief or extra funds are available, but these items are still necessary. – Armida F.
I have to say no to money to say yes to caring for myself and my family. I work for myself so I have no access to paid leave to take care of myself or my loved ones. My work has taken a hit, making my income stretched pretty thin to cover my own bills and well being. My in-person social life is almost completely gone, especially after this last wave. Getting COVID could cause my parents harm in more ways than just the virus itself: it would postpone my mom’s treatment and care she receives in a clinic. – Avis Adele Hitchcock
The impacts of the pandemic have added significant challenges to accessing care for my mom, and also for myself. I often feel like I don’t know how to write this experience because it’s still happening, and it’s always new even if we try to prepare for as many scenarios as we can. As a graduate student in 2020, and now an adjunct high school teacher, I’ve never had access to paid leave, which has impacted the relationship I can have with my mom — I’m often working to survive so that I can care for her and/or manage care for her. It’s exhausting and always evolving. – Bailey Pittenger
Inflation has further drained our savings and we’ve faced prolonged displacement due to exceedingly high home prices. – Breanne Mashek
Currently, we are still challenged with inconsistent caregiver support, and I believe it’s directly related to the pandemic and lack of staffing. Also, we’re being “priced out” of our current residence with a $400 monthly increase. We’re praying to find a home to purchase. – Jerri McElroy
My dad currently needs to be hospitalized for mental illness, but his psychiatrist and psychologist are debating hospitalization because of the high exposure risk of COVID. My mom’s facility was closed down due to COVID, but has now reopened, but she does not want to get tested for covid (she has dementia). I think caregivers in facilities are struggling with how to test those with dementia because it is difficult and those patients don’t understand what is going on. More training here would be very helpful. – Julie J.
Everything seems to take three times as much planning to have personal time. It increases stress levels and limits support. – Julieann Mercer
All of my problems are the same, though I really miss the pandemic unemployment because that made life so much easier when it was happening. 99 percent of my problems would be fixed by cash. – Karen M.
Coordinating services for both my elderly aunt and special needs adult son is very time consuming: long and multiple phone calls, document completions and deadlines, scheduling and service coordination. It’s emotionally, as well as physically, draining. The physical and mental fatigue compete with that of work and can be very overwhelming some days, making it difficult to have enough energy to handle my own personal healthcare and self-care. – Mary Lee
I’m dealing with PTSD, and IBD diagnosis, dental problems, and anxiety. I’m also facing financial issues: SSDI overpayment, loan and tax debt, higher cost of living, and lack of funds to make ends meet. – Nicole C. LeBlanc
My son has been denied twice to receive IHSS (In-Home Supportive Services). I am still an unpaid 24/7 caregiver who couldn’t even work outside the home and is unable to help with our meager family finances. Our rent has gone up last September and it’s really hard to come up month after month with the money to pay basic bills. Just to be clear, this is just ONE of the many issues I am dealing with as a special needs parent on a daily basis. – Ruth Floresca
How have you managed these challenges from the last two years? What are your best coping mechanisms? What advice would you give to other caregivers who may be experiencing grief, trauma and/or burnout?
We are trying to make the best of being isolated at home. We try to do things, as our small family, that make the day a little better. We got a puppy and take him for walks and teach him new tricks. We have all upped our anxiety meds. We nap, binge shows, and bake. We pray, meditate, and do yoga. I want other caregivers to know that they are not alone. There are so many of us feeling like this. – Allison Breininger
I maintain my faith in God and am able to count on people from my church for emotional support. I call friends often and I am able to share and vent about my day to day obstacles. My best advice is to try to be optimistic, count on others around you, and share your feelings. – Armida F.
I have had so much grief for the way my life was and the way my life is now. My advice of what has supported me is loving myself through it all. I do little things that I love and that bring me joy, knowing that I still can live my life as best as possible and strive for what I want to create for it even in the time of a global pandemic while becoming the primary caregiver to both my mother and father. Love yourself and give yourself grace. Counseling has greatly supported me during this time and knowing that it’s okay not to be okay all the time. – Avis Adele Hitchcock
I’ve built community through advocacy work, learned to create space for processing grief, and made time in my everyday life to reflect on gratitude. All of this and my experiences as a writer, scholar, and teacher have poured over into designing a care-centered curriculum for my high school English students. I’ve also made steps towards building a “care team” for my mom consisting of experienced care professionals, local independent caregivers, and the friends who have stuck through this experience with us. I’m very passionate about harm reduction, abolition, and the work of building care resources in the local community so that we can invest in a functioning care infrastructure. – Bailey Pittenger
Honestly I hadn’t been managing that well until I joined this fellowship and began to notice just how close to empty I had been running all year. We MUST put our own oxygen masks on first before giving care to those around us. I have a lot of grief and I share that at 12 step meetings and with a therapist. – Breanne Mashek
I do lots of Yoga, stay knowledgeable of current political issues and eat well. This support group to check in with each other has helped tremendously. – Gisselle
My best coping mechanisms have been physical movement, i.e. walking, skating, jumping rope, bowling, exercise, etc. The lack of caregiver support means I have to to handle my father’s full care, so my personal health has been a priority in order to maintain my strength and endurance to care for him. My advice to other caregivers is spend time in nature, take a deep breath, and connect to a local caregiver support group. – Jerri McElroy
The expansion of long distance caregiving resources has been a surprisingly helpful aspect to COVID: many more service industries, court systems, etc. are willing to accept credit cards, emails, or do a zoom meeting/court hearing etc rather than force things to be done in person. To cope, I would say that the best thing my husband and I have had the privilege of doing is going to therapy. The tools that my husband and I have learned and use in our everyday lives have been life changing in both our perspectives and our interactions with others. It has prevented us from becoming bitter about the systems we fight everyday. – Julie J.
I like writing, spending as much time as possible outside, and spending time with my puppies. My advice is to find an activity that is creative that you enjoy and allows you to “drift away.” – Julieann Mercer
Disassociating probably isn’t a valid answer. – Karen M.
Staying connected with family and friends via phone, zoom, and recently some social outings have been some stressbusters. My religious connection provides me both socialization and renewed hope. Having a strong faith connection has brought me through past challenging times which I reflect on when feeling hopeless. Enjoying time with my children at home helps to strengthen positivity for me. – Mary Lee
Seek out assistance, get a message, get acupuncture. I’ve been doing EMDR therapy, physical therapy, and hiking nature therapy. – Nicole C. LeBlanc
I am grateful to have a good circle of support, not only in my husband and other sons, but also from extended family such as my husband’s siblings and my aunts and cousins who also live in California. My coping mechanisms include trying to write about our experiences and share information that might also help other special needs parents. My advice to fellow caregivers is to learn how and remember to ask for help when you need it, to keep looking for resources, and to build connections with people and groups who may also be undergoing similar circumstances because they can provide useful information and tips you might not even know you need. – Ruth Floresca
What do you wish President Biden and Congress understood about your caregiving needs?
I wish they understood that my husband’s life is important and valuable and that people like him should be taken into consideration when making decisions about COVID. I wish they knew the financial, physical, emotional, and logistical toll being a caregiver takes on me each day. – Allison Breininger
Caregiving is a massive responsibility and needs to be done with care and compassion. Being able to meet financial needs would allow me to focus on caregiving without additional stress. – Armida F.
I wish they knew that going back to work in person to make ends meet in new ways is not something I am comfortable with or willing to do at this time because of my care responsibilities and because the pandemic is still happening. – Avis Adele Hitchcock
I wish Biden and Congress would understand that the work of caregiving is never isolated nor independent, and so support towards caregiving would benefit our collective communities at large. The harm being done at the expense of our most vulnerable populations by not investing care only makes the collective call towards investing in care all the more urgent. – Bailey Pittenger
That the longer they keep playing childish games in Congress, the longer and worse people suffer. Especially those who are most vulnerable and at the margins of society. – Breanne Mashek
Financial support is key. Student loan debt keeps me from supporting my family more. – Gisselle
I wish President Biden and Congress understood that caregivers matter. The level of care my father requires is equivalent to skilled nursing, and caregiver wages should reflect the level of services they provide. – Jerri McElroy
That caregiving can be all consuming, even from a distance. Not a day goes by that I am not managing the affairs of another person in some capacity. Some days those tasks are life or death, some days they are basic maintenance. But even the unpredictability of that makes it difficult to plan almost anything in my own personal life. – Julie J.
I would like Biden and Congress to recognize the true value of caregiving in our nation and expand HCBS to support the exploding need for care among all age groups. – Julieann Mercer
They need to understand that unpaid work is still work. Being a stay at home mom, being a caregiver – these are full time jobs. If they won’t pay us, they could at least give us credits for social security. Right now, if I retired at 67 I would get less than $500 a month because of my work history and many years being a caregiver. I don’t even qualify for regular disability because of my lack of credits. Just because I have multiple years where I didn’t earn an income, or at least a taxable one, that doesn’t mean I didn’t work. – Karen M.
Systems of care, especially for aging people and individuals with disabilities, are far too complex and time-consuming for caregivers. Being both a parent/caregiver and advocate helping other families, I’m constantly faced with delays in getting responses from service providers or the requirements are not clear or consistent. Caregivers need paid time to care properly for their loved ones without the stressful fear of job loss. Most of us caregivers are multi-caregivers or other “dual-role” income generators whose health and well being affect the care and livelihood of the whole family. – Mary Lee
That adults with autism and intellectual/developmental disabilities (I/DD) need access to HCBS support. Our lives are not disposable. We need Direct Support Professionals (DSPs) to get paid a livable wage, as turnover is traumatizing and disruptive, and negatively impacts our ability to live and work in the community. We need paid sick days, livable wages, and hazard pay during the pandemic. Being disabled is expensive. We need more services covered by Medicaid and Medicare. – Nicole C. LeBlanc
I wish President Biden and this country’s lawmakers could review outdated policies that impact caregivers and those we care for. I hope they’d make a genuine effort to imagine themselves in our shoes and see how much individuals and families are suffering because of those policies. – Ruth Floresca
It’s the hardest job I have had, yet I have received no training, no counseling, and no support. And it’s another unpaid job to find and advocate for those resources. And I earned a whole PhD, in Robotics, from Duke University, while working with NASA. That experience pales in comparison to the work I have to put in for caregiving. – Victoria
If I had access to an element of HCBS, I would be able to…
If I had access to case management, I could spend more of my time and energy caring for my loved one, my daughter, and myself instead of on the phone. – Allison Breininger
If I had access to skilled nursing care, I would be able to provide more dignity to my mom as she transitions through her terminal illness, and I would have more time to share with my mom for processing and healing through our experiences with grief. – Bailey Pittenger
If I was a paid caregiver I could care for my dad full time in an appropriate home and manner and we wouldn’t have to go the very expensive route of a memory care facility. – Breanne Mashek
If I had access to paid skilled caregivers receiving sustainable living wages, I would be able to ensure that my dad and I have efficient caregiver support and relief to pursue/maintain additional streams of income for our household. – Jerri McElroy
If I had access to mental health case management, my dad might be able to get the mental health help that he needs and be able to stay in his home. – Julie J.
If I had access to better case management for my son’s independent living needs, I would be able to spend more time on my own personal care and socialization. If I had coordinated case management and better personal care services for my elderly Aunt, I would be able to enjoy more outings and visits with her. – Mary Lee
If I had access to HCBS, I would be able to recover from PTSD and manage health issues, money issues, my SSDI overpayment crisis and day to day stress and challenges of life in this pandemic world and beyond. HCBS would give me support to find my dream job of being a lobbyist or policy analyst. – Nicole C. LeBlanc
If my son had access to useful but expensive equipment (e.g. a wheelchair accessible van, a Trexo Robotics walker, horse-riding therapy, a comfortable special needs chair, a beach buggy, etc.) not covered by insurance, I am sure he would have a better quality of life. – Ruth Floresca
