Changing How We Provide Care: Lessons Learned From the Pandemic
Coronavirus has put a spotlight on the new challenges of caregiving
En español | It's hard to believe until it happens to you, but caregiving and crisis can strike at any time. The COVID-19 outbreak has forced all of us to face that possibility. Since the beginning of the year, many Americans have become caregivers for the first time. And half of those have become caregivers because of COVID-19. People who were already caregivers have been affected too. Nearly half of family caregivers are reporting that their caregiving responsibilities have increased because of the virus.
I became a caregiver over the summer (not because of the coronavirus). It's not my first experience caregiving for a loved one but doing so in the midst of a pandemic makes it feel brand new. I am not permitted to accompany my care partner inside medical appointments. In-home help is not readily available or easy to arrange. It's been frustrating and time-consuming to provide care in 2020.
Even for experienced caregivers, there's been a forced adaptation. By today's estimates, we can expect the virus to be a part of our lives for years to come. This means present and prospective caregivers need to account for the virus in their medical, legal and financial planning.
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Preparing for the Unpredictable
A caregiver's biggest asset is time. Reports indicate that caregivers are spending an additional nine hours a week (a full workday!) on caregiving activities in 2020. And there are mental and physical tolls that are increasing stress significantly. Getting organized and preparing for caregiving events will give the gifts of time and reduced stress when duty calls.
Life care planning documents reduce caregiver strain
Americans don't like to talk about mortality. When asked, most people will agree that end-of-life planning is important, but less than 40 percent of people sit down to formalize their planning in writing. Since the outbreak, we've all been reckoning with the possibility of contracting a virus that can wreak havoc on long-term health and has taken the lives of many older Americans. If there's ever a time to talk about planning for an unexpected illness, this is it.
So, talk to your loved ones. The holidays are around the corner and while we may not be gathering as we have in the past, we can still reach out to family and friends. Take the opportunity to discuss life care planning and assist each other in making and sharing your legal and medical documents. Whether there is a family coronavirus crisis or some other unexpected event, you will be relieved that you've taken these steps.
Get your home — and yourself — ready
I've definitely lost sleep thinking about how my household will function if one of us contracts the virus. While I've had to make disaster plans as a caregiver in the past (living in hurricane-prone Florida and taking care of a parent with cancer and high-level medical needs meant having an evacuation plan and a stockpile of essential items), I avoided thinking about what would happen if I got sick. As a cancer caregiver, I got a flu shot and hoped for the best. As a caregiver and parent today, considering how I'll handle childcare and running our household (not to mention my business!) if I must self-quarantine because someone in my immediate family contracts the virus is an unavoidable reality.
AARP and the CDC have recommendations and checklists to assist caregivers in their preparations. Thinking about ways to limit contact or separate from a vulnerable family member is easier to do in advance than on the fly. Knowing what respite care options are available to you can save time and reduce caregiver burnout. Learning your options and having a backup plan for yourself and household members to recover from the virus and help quell its spread is a new — and necessary — part of caregiver disaster planning.
Embrace alternative means to receive medical care
Telehealth (medical care provided remotely, by phone or videoconference) has been increasingly used this year. It keeps caregivers from having to expose their care partner to other, possibly sick people at an office visit. Encourage your family and friends to embrace it and share tips and tools to make the most of telehealth services.
If an in-office visit is a necessity, caregivers must do their research in advance to avoid being surprised on the day of the appointment or when seeking treatment. Learn office and facility policies and procedures in advance to keep the visit as smooth as possible.
Concerns about keeping loved ones safe in facilities are prompting families to reconsider moving into, or remaining in, long-term care. The only way through this is for families to collaborate on alternative options, whether it is aging in place, shared elder care, or another option. Studies show that 1 in 3 Americans are researching how they would pay for long-term care services if they needed them. Take the reins on this today if you expect that you or your care partner will need medical or nursing care beyond what can be provided at home.
In online searches and support groups, caregivers frequently ask if there is a way to be paid and how they will keep their jobs while juggling at-home responsibilities. It's no wonder this is such a popular topic among caregivers, especially in a time where so many have been furloughed, laid off and terminated.
Be paid to care
Although there are not many ways, it is possible to be paid to provide care for a loved one or friend. If you want to learn what's available to you, consult an elder law attorney in your state. Aside from government and insurance programs, it may be possible for your care partner to pay you and still qualify for their own public benefits.
The fact that this is such a popular topic means that we all have to put paying our caregivers into our financial plans. Can money be set aside in our long-term plans to account for the realistic possibility that a relation or friend will have to care for us? Ultimately, it may be less expensive than paying for help from professionals.
Maintaining employment and receiving caregiver benefits
The job market is uncertain. Feeling the strain, many people are forced out of work or departing on their own. And it's mostly women, who are leaving at four times the rate of men.
While this seems bleak, the coronavirus has prompted a sharp and sudden acceleration in the implementation of family-care benefits in workplaces nationwide. More companies are offering subsidized backup elder- or child-care. And flexible work arrangements are becoming commonplace. It is estimated that three quarters of American corporate workplaces are now offering flexible arrangements, spurred in large part by the pandemic.
These trends all favor the unique work-life juggling act that caregivers experience. If your company isn't offering these benefits or is resistant to them, sharing the research and guides may help create a culture more suited to the needs of caregiving employees today and tomorrow.
Increasing knowledge and access to resources
Historically, caregivers wait until about a year of caregiving to begin researching outside resources that can help them. We cannot afford to wait so long in such tough times.
Caregivers need to know much sooner what assistance exists and how to access it. With laws and policies changing frequently, it is difficult to stay up to speed. This year, especially, take the time to learn about major consumer protections that have been passed in response to COVID-19. Retirement savings waivers, mortgage relief, utility assistance, tax credits and loan modification laws could keep your family afloat. Knowing where to find free or low-cost advice, like in the resources listed here, can assist in accessibility. Contacting your local Area Agency on Aging and accessing AARP's resource guides may also point you in a good direction.
Caregivers are used to rolling along with changing circumstances. But even the most adaptable people have felt the strain of the COVID-19 pandemic. We must talk more, not less, about our challenges. We have to plan our caregiving lives, share our experiences and knowledge, and advocate for our workplaces and lawmakers to provide much-needed support. For the foreseeable future, increasing our preparedness and maintaining financial and employment security for caregivers will be a bridge over tumultuous waters.
Amanda Singleton is a recipient of CareGiving.com's national Caregiving Visionary Award and serves caregivers across their life span through her law practice. Follow her on Twitter and Facebook.