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By John A. Schall

Sometimes the caregivers who call our help desk need assistance finding local resources for their loved ones. Others just want to talk with someone who understands how stretched they feel.

They are spouses, parents or often adult children with aging mothers and fathers. Being the caregiver for a sick or disabled loved one has never been easy. When the coronavirus took hold, that difficult job became almost overwhelming for some people.

Changes at Home

Many families cared for a loved one at home prior to COVID-19. These families had a routine and possibly outside help. But the pandemic upended that normal. Now some caregivers must balance kids’ virtual school with their own work-from-home schedule and care for their aging or disabled family member.

In other scenarios, the pandemic led families to open their homes to older loved ones for the first time. Some were motivated by concerns about the virus’s spread around nursing homes; others by financial strain from furloughs or job loss.

With an aging parent now under their roof, caregivers discovered how, for example, their mom with Parkinson’s needs assistance getting around or that their dad’s tremor has progressed so that he can no longer safely shave himself. Add household tasks, yard work, and paying the bills, and you understand why surveys show mental health is suffering.

Long-Term Care Challenges

Caregivers whose loved ones remain in a long-term care facility face yet another set of challenges.

Staying in a nursing home or assisted living facility during COVID-19 has meant staying away from just about everyone. In nearly every state, visitors, and even some health care providers, have been kept out. This forced separation is hard on both the caregiver and the loved one they support.

I know of a case that involved a nursing home resident who experiences agitation related to Alzheimer’s disease. She was calmed by a daily visit from her son. But without that interaction, the woman’s symptoms worsened.

Everyone recognizes that long-term care facility precautions were necessary, but they can have heart-wrenching consequences.

Policy Efforts

Well intentioned policymakers have taken several steps to address the pandemic’s impact.

The federal government and most insurers have loosened restrictions and added payment schedules for telemedicine. Virtual visits during COVID-19 have been wonderful because they’ve allowed patients access to care they may otherwise have had to forgo.

From a caregiver’s perspective, telemedicine still has a little room for improvement. The secure connection allows the doctor and patient to connect, but does not allow a caregiver from a third location. Pre-COVID-19, caregivers who drove a loved one to the doctor’s office would have been in the room during the appointment, serving as another set of eyes and ears, and providing their insight. Caregivers help report symptoms, express concerns, and ask questions. Without their caregiver’s present, some patients may be left confused, but too timid to speak up.

As policymakers consider extending and further expanding telemedicine capabilities, I hope they will consider the role of caregivers.

The same applies to employment policies. Adjusting leave policies to include time for caregiving and continuing, where possible, to allow flexible schedules are two ways businesses can support their employees who are supporting loved ones.

In the past six months, society has rallied around health care professionals and other essential workers. I urge communities and individuals to applaud caregivers in much the same way. Caregivers have had to shoulder new stresses and additional burdens because of the pandemic. They have – and will continue to have – an integral role in supporting aging or disabled loved ones.

May we all recognize the important role they fill in their families, communities, and across the country.

John A. Schall is the chief executive officer of the Caregiver Action Network, a member organization of the Movement Disorders Policy Coalition.

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