I spent nearly a decade caring for my mother as an unpaid caregiver. My book One Caregiver’s Journey outlines the changes and challenges I faced. I learned to budget my time and money. I was fortunate to have a retirement coming in and pooled it with my mother’s small social security check to cover living expenses. I was a 24/7 sole caregiver, and I focused on my mother’s needs. The pandemic caused a dramatic shift in caregiving and caregivers. There have been numerous reports during the pandemic which focused on family caregivers.
The CDC released a report which spoke of the struggles of the unpaid family caregiver.
All caregivers have times when they are faced with mental health issues such as anxiety, depression, or suicidal thoughts, which have become more prevalent since the pandemic. The CDC report cites a study at the Turner Institute of Brain and Mental Health. The study targeted family caregivers. 40% of caregivers are unpaid – 85% of the sandwich generation experienced mental health issues during the pandemic. The importance of paying attention to caregiver issues and the need for education and resources to provide support is now at the forefront of caregiving.
The pandemic brought to light the challenges for unpaid caregivers and what they faced:
1) Formal and informal sources of support disappeared, such as senior daycare centers and physical therapy. Family caregivers were left to attempt to design and develop activities to keep loved ones moving and active. They did not have the luxury of having someone come into the home and review whether the environment was safe and what changes were needed.
2) Caregiving for an elderly relative can be exhausting. Dealing with kids and elderly parents simultaneously is complicated as well as exhausting. Many families became multi-generational overnight.
Tending to the needs of children can be much different than what elderly relatives may need. Like the sole caregiver, family caregivers had no respite for their exhausted bodies and minds.
3) Caregivers need more support to cope. Today many entities have begun providing classes and support online.
There are many good websites that provide information on the essential services for caregiver support.
Caregivers do not always have the luxury of leaving home to attend classes.
4) Health systems have always focused on patients and not caregivers. No one asks the caregiver how does episode affects you? No one questions the caregiver how we can help or support you to carry out your role and responsibilities? During the pandemic, the majority of unpaid caregivers had no support. Post-pandemic geriatric physicians say we need to take a step back and look at the village around caregivers because elderly patients can’t have a successful outcome if there is no family support and if sole caregivers are not reimbursed for their service.
Are today’s caregiving obstacles different from those families faced during the lockdown?
1. Before 2019, 1.6 million children between the ages of 8 and 18 were tasked to care for an elderly relative. Today the number is estimated to be well over 2 million. They are unpaid, and they are also giving up their childhood to care for elderly relatives. There is no support system for them, and in most cases, their assignment is silent and unknown to anyone.
2. In October 2021, in the journal Pediatrics, it was reported that 1 in 515 children in the US had been orphaned with one or both parents dying from Covid-19. This is now referred to as the “hidden pandemic.” The obstacles these children face may include basic survival. Back in school, it has become the responsibility of the school systems to find or provide support – mental, physical, and financial.
3. Caregivers are no longer retired people taking care of parents.
Millennials have become one of the fastest-growing groups of caregivers. They spend inordinate amounts of time looking for assistance online to cope with the significant changes in their lives. They are almost all unpaid. Returning to work has been one of the biggest challenges for this group. How do they juggle the needs at home with the responsibility of earning a living? Recently, many employers began allowing this group to continue to work remotely.
Companies are attempting to devise solutions and options to address millennial caregiving issues.
4. Families have become multi-faceted, caring for elderly relatives while raising children who are in the K-12 school age range. These homes may face chaos, frayed nerves, elder abuse, or child abuse. All of the mess is related to the stress of the home needs and caregiving challenges.
Post-pandemic children have returned to school, but elderly family members may not have the financial resources to seek alternative living arrangements. This has caused families to seek assistance from community or government entities.
5. Many family caregivers are often not part of modern society or the modern family. They are unpaid and coping in two diverse worlds while attempting to make a living and keep a roof overhead. The income from their jobs is pooled with monthly retirement benefits from their elderly relatives. Often the total amount is insufficient to meet the needs should an emergency arise. For many, the focus is not “belonging” to society; it is making ends meet to meet basic daily living needs.
6. Caregivers have more availability to community resources today – many organizations will help guide them through the program requirements for government and local programs. Unpaid caregivers can access various county and state programs to see if they qualify for the remuneration of their services. Often the amounts are not sufficient, but they certainly offset many of the costs associated with being a caregiver.
7. As the Covid 19 variants hit various parts of the country – access to relatives in senior care facilities has changed. Initially, patients were kept in rooms 24 hours a day with doors closed for safety. Family visits consisted of family members standing outside windows or doors.
Families were eventually allowed to visit outdoors with masks for 30-minute increments once weekly. Families were allowed into the facility with masks and face shields. If the facility had a Covid outbreak, it was in lockdown again. Family members and caregivers find themselves in an ever-changing set of circumstances where senior care is concerned. Today there are still outbreaks of noroviruses, influenza, and sometimes Covid in nursing homes. That is just the nature of the beast in senior living facilities.
8. As our communities begin to function more like pre-pandemic days, there are many changes in our elderly relatives. Elderly relatives suffered significantly from no human contact during the pandemic. That lack of human interaction may have affected them more than any other segment of our society. Medical studies and articles reflect the mental decline of many elderly patients has been significant due to no human contact, particularly with loved ones. Today the focus on better mental health is on young people. Older people will be the last to receive such focused care.
Thanks to social media, there are indeed shifts in caregiving, which offers a multiplicity of options. AARP is one entity that lists the availability of services by State and individual entities. They are not the only entity that can help family caregivers find answers to their questions. If you are a family caregiver in these challenging times, take the opportunity to look for some assistance.
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