Post-Covid Caregiving Questions Answered by Medical Professionals

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Post-Covid Caregiving Questions Answered by Medical Professionals

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A year ago we were all hunkered down in quarantine daydreaming of the moment we would be free to do the things we want to do and see the people we want to see without worry. The eventual return to "normal" life. 

Now, a little more than a year later, we're on the cusp of this "normalcy" in the U.S., yet there are a lot of hesitations (and rightfully so). We've been left with vague answers to questions about when and how to acclimate ourselves and our loved ones back into a more normal life. 

To help us get firm answers to these questions and more we've enlisted the help of medical professionals, Dr. Chirag Patel and Dr. Jason Karlawish.


Chirag Patel, MD, FAAHPM

Dr. Patel is the Chief Medical Officer for Pure Healthcare in Dayton, Ohio - the first free-standing palliative care center in the U.S. Additionally, he is the Medical Director for Innovative Care Solutions and the Regional Chief Medical Officer for five Ohio’s Hospice Affiliates. 

Dr. Karlawish is a professor of medicine at the University of Pennsylvania, co-director of the Penn Memory Center and author of “The Problem of Alzheimer’s: How Science, Culture and Politics Turned a Rare Disease into a Crisis and What We Can Do About It”.

Many family caregivers may face the dilemma of being asked to go back to the office soon. With there still being so much uncertainty around coronavirus and how it might impact the people they’re caring for, how do family caregivers navigate these conversations with their employer?

Dr. Patel: It's definitely a difficult topic as I know some organizations are missing the collaborative nature of in-person activity that is necessary for innovation and project progress. I have recommended to my teammates in my organization throughout this pandemic that we must play strong defense against COVID-19.

In early 2020, at the beginning of pandemic, we had to dislocate teammates from work and create necessary separation to keep this virus from spreading as we knew little about the transmissibility of this virus and how dangerous it was. We also had no medications to combat this virus, making it necessary to push teammates to home to continue to work remotely - to keep everyone safe.

Today, we have 3 emergency use authorization (EUA) approved vaccines available now - all proven to be highly effective in preventing serious illness and even transmission of COVID-19. Accepting vaccination, if safe for you, is playing the best defense we can against this virus, so I recommend working with your employer to find an option for vaccination.  

This will keep you safe while at work and keep your family safe as there is low likelihood for you to ‘catch’ COVID-19 if exposed in your workplace.

Dr. Karlawish: Vaccination is key. If your relative is vaccinated against COVID-19, then their chances of developing an infection are greatly reduced and, even more unlikely, is a severe infection - one that requires hospitalization and oxygen support. This applies to you, too. The circle of care ought to be vaccinated. 

Still, circumstances may require providing care during hours that conflict with work. I know of several adult day activity programs that shut down. During the months when we worked remotely we sort of managed without them, but it's not the case when we have to be in person at work. Without that program, what’s a caregiver to do? I recommend a frank and candid conversation with the employer. And an email to your senator and congressperson. America needs an infrastructure of long-term care services and supports!

Senior living facilities are beginning to allow in-person visitation again in many states. What are some things caregivers should be aware of before visiting their loved one? 

Dr. Karlawish: Are you, the relative, vaccinated? If not, get it done! Once there, be prepared for changes such as weight loss, weakness, or a low mood. Be prepared to spend more time than you planned. Be prepared for grief and loss. And be thankful. Thank the staff who endured.  

Dr. Patel: I continue to recommend that if you have any symptoms of COVID-19, like fever - even if you're vaccinated - to avoid visiting our senior living communities. I also recommend that vaccination for COVID-19 be completed as well to help improve confidence that the visiting family member isn’t silently infected by COVID-19, potentially inadvertently spreading COVID-19 within the nursing home.

What are some specific concerns family caregivers with loved ones who have dementia should be aware of when visiting? 

Dr. Karlawish: Isolation is not good for anyone. That’s why solitary confinement is among the most severe, penal forms of punishment. Isolation can cause a person to experience problems with attention, concentration, and memory. A person with dementia is even more likely to experience these problems. Their brain is vulnerable. 

Don’t turn the visit into a memory test. “Do you remember me?” or variations on that will be stressful. Such questions - “Mom, what’s my name?" - remind the person of their cognitive problems. Do turn the visit into an opportunity to reconnect. Bring along things to do, to look at, to eat. Ask questions, listen, and then ask some more. See where the conversation goes.   

For other dementia care strategies, read Patience Makes Dementia Caregiving More Enjoyable, Plus Other Tips for Healthier Caregiving

Many family caregivers have been keeping their loved one isolated and safe at home during the pandemic. When is it acceptable for caregivers to take their loved ones out again? Or have family members and friends over to visit? 

Dr. Karlawish: After vaccination, it is safe to get out and see visitors.

Dr. Patel: The separation from those that we care for has had a significant, negative emotional consequence for many of us. Knowing that you have a very low risk for catching COVID-19 or transmitting it when vaccinated against COVID-19, will give us the necessary confidence that we are not likely to be infected with COVID-19 leading to a safer environment at home. When going out for dinner or attending church, I would still recommend that we follow strict infection-control processes. I would also limit large group gatherings or crowded indoor environments. I would wear masks, as per the guidelines established by the CDC, as well as frequent hand washing and keeping spatial distant as appropriate. Again, being vaccinated for COVID-19 offers you and your loved one the best chance to return to normality while keeping you as safe as possible.

What are some specific concerns family caregivers with loved ones who have dementia should be aware of when visiting others or going out?

Dr. Karlawish: Everyone is going to have stories, some moving and triumphant, others, sad. It’s going to be an emotional time. Anticipate that. COVID-19 disrupted families. It killed. There may be losses to explain.

How can a family caregiver help their loved one practice socializing again?

Dr. Patel: I would recommend starting slow - pick a few friends that have been vaccinated and gather in an outdoor environment when the weather is nice. This type of social gathering would be extremely safe.

Dr. Karlawish: Don’t let the event become a memory test. “Do you remember sis?” or variations on that will be stressful questions. And avoid the "get your facts straight" answers if the person makes a mistake i.e. “Mom, that’s your sister, not mother!” 

What can a family caregiver do if their loved one becomes anxious or overwhelmed from socializing?

Dr. Patel: I think giving them control of the experience will be critical. Let them decide who they engage with, where it will happen, and how long will it last. Being able to decide how this slow tune up to return to normal activities will help build confidence that, with proper infection control and vaccine on board, life can be like it used to be.

Dr. Karlawish: Take a break and try it again, one step at a time. Keep on keeping on. 

Do you have any further advice for family caregivers at this time?

Dr. Patel: Final takeaway: Vaccination is critical - not only to make SARS-CoV-2 (COVID-19) extinct, but also to get back to living normally. To do the things we always took for granted, we need to develop herd immunity so that we can never let COVID-19 spread as prolifically as it did in 2019, 2020, and early 2021. The mutations in the virus’ genetic code are preventable if we don’t let the virus replicate. The best way to prevent this virus from replicating is eradicating it through our immune response, which is done by either natural infection or via immunization. I recommend, if able, to vaccinate for COVID-19. Together, we can end this pandemic and return to the life that I know, personally, I miss very much.

Dr. Karlawish: Write to your senators and congresspeople to tell them how hard this pandemic was, how it revealed we are all caregivers or need care, and that America needs to support them.

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