Coping with novel coronavirus while caregiving – Teleconference notes

Coping with novel coronavirus while caregiving – Teleconference notes

Today, the WellMed Charitable Foundation organized a conference call on how to cope with the novel coronavirus while caregiving, featuring speakers Dr. Elliot Montgomery Sklar and social worker Lucy Barylak. Though the conference call was for caregivers (and not necessarily Parkinson’s caregivers), we listened in as we thought there would be useful suggestions shared for us all on the emotional and psychological aspects of coping.  Indeed, the two speakers discussed how the current pandemic has been impacting caregivers and offered suggestions for regaining some sense of control amid this chaotic situation.  We at Stanford Parkinson’s Community Outreach are sharing our notes from this conference call.  

The speakers were:

  • Dr. Elliot Montgomery Sklar:  an associate professor in the Department of Health Science at Nova Southeastern University in Florida.
  • Lucy Barylak, MSW:  a social worker based in Montreal, Canada.

If you have questions about the content of this presentation, you can contact WellMed Charitable Foundation by phone at 866-390-6491 or email at caregiversos@wellmed.net.

This call may have been recorded and if so, would be posted within a few days at their website here.

The speakers mentioned a myth-busting web page from Johns Hopkins Medicine that debunks some of the misinformation around the novel coronavirus. It can be viewed here.

The speakers mentioned ElderCare Locator, which is a national service that connects older Americans and their caregivers with trustworthy local support resources pertaining to housing, legal rights, transportation, health, insurance, and support services. To learn more, visit www.eldercare.acl.gov or call toll-free at 800-677-1116.

For additional resources about Parkinson’s caregiving –  including links to online resources, webinars, and podcasts – see this page on the Stanford Parkinson’s Community Outreach website.

Note that our Stanford-run PD caregiver-only support groups are now meeting via conference call.  Most of our groups will be meeting “virtually” twice a month, rather than once a month, as there’s a greater need for support during this time of isolation.  These meetings are ONLY open to PD caregivers who are already on our meeting reminder email lists.  If you are not on the Peninsula in the San Francisco Bay Area, you might contact your local PD caregiver support group leader to learn if there’s a support group meeting “virtually” near you.  Or start one! 

Now… on to our notes from the webinar.

– Lauren

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Coping with novel coronavirus while caregiving – Conference call notes

Presented by the WellMed Charitable Foundation

March 18, 2020

Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

The speakers were:

  • Dr. Elliot Montgomery Sklar: an associate professor in the Department of Health Science at Nova Southeastern University in Florida.
  • Lucy Barylak, MSW: a social worker based in Montreal, Canada.

Many of us are feeling isolated at home, or isolated in our concern, so the speakers strove to give some general recommendations and also to answer as many questions as possible. They discussed how the current COVID-19 pandemic has been impacting many of us and offered suggestions for coping with the unique stresses of caregiving during a pandemic. Many resources are available for our physical health but less so for emotional coping, so this conference call aimed to address the emotional and psychological challenges we are all facing.

A brief overview of the novel coronavirus (COVID-19)

Coronaviruses are a large family of viruses that spread from person to person. This is why the CDC recommends that anyone who has it or may have been exposed should isolate themselves and engage in social distancing.

A novel coronavirus is a new virus that has not been previously identified. It has been given the name COVID-19 to distinguish it from the other, common types of coronaviruses we already knew about. Scientists are having to learn about COVID-19 from scratch, and thus information about the virus continues to evolve on a daily basis.

The Centers for Disease Control is a good resource for staying up-to-date on the latest developments.

General recommendations for caregivers

Try not to panic! It is normal to feel scared with all the news developments and seeing empty shelves in the grocery stores. Much of it is out of our control and can feel overwhelming. Focus on what you can do. Practice basic social distancing, such as avoiding any non-essential outings or social gatherings, grocery shopping during off hours, working from home, and trying to take care of your own physical and mental well-being in addition to the person you are caring for. And of course – wash your hands frequently and thoroughly!

Focus on day-to-day tasks such as ensuring an adequate supply of food (ideally 2-3 weeks’ worth) and other essential supplies. Think ahead more than you usually might. Does your loved one usually attend adult day care? If so, will those services have to close given the circumstances? Try to make alternative plans to avoid gaps in coverage.

Check with your pharmacy and/or physician’s office to see if it is possible to receive a larger supply of any prescription medications that you or your loved one take, to avoid repeat trips to the pharmacy or in case of closures. Some pharmacies may offer delivery services; now is a good time to take advantage of this, if possible. If you are on prescription medications, check with a pharmacist or doctor before taking cold or flu remedies that could interact with your existing medications.

For those who are over the age of 60, you should be sheltering at home, regardless of whether you have symptoms or not. It’s hard, but don’t let your grandchildren come to visit you – you don’t know who they have had contact with. They may have been in school up until recently. Try to keep in touch with family remotely, using video or phone, to mitigate feelings of loneliness or isolation.

Make a list of resources locally that can delivery to you, such as grocery, restaurant, pharmacy, or others. Do you have family or friends who are lower-risk and can go to the grocery store for you?

It’s a good idea – whether you are a caregiver or not! – to develop a daily routine for the household. Schedule mealtimes, time for working (if applicable), hobbies, recreation, exercise, and perhaps keeping a diary. A daily routine helps to re-establish a sense of normalcy.

Exercise is just as important as usual, both for your loved one and for yourself. It is necessary for physical health but provides vital stress relief as well, and should be a part of your daily routine. You may need to get creative and improvise ways to stay active, such as using heavy objects around your house (like water bottles) as hand weights, or putting on some music and dancing together to get your heart rate up.

You can still go for a walk, as long as you are cautious about avoiding other people outside. Those who live in an apartment building may need to take extra precautions such as using the stairs instead of an elevator, if you are able, and using hand sanitizer or washing hands after touching any handrails or doors.

Consider limiting screen time right now, to avoid increased panic and anxiety about the news. While it can help us connect with each other, this is a good time to consider limiting how much news and social media we all consume each day. Additionally, lots of links are being circulated on social media that are inaccurate, spreading misinformation. Stick to neutral news sources such as NPR to keep up with important developments about the virus. Take in enough news to be informed, then focus your attention on more immediate concerns.

Think about what sources of entertainment are available to you. Listening to music and singing can be fun. Many streaming services such as Netflix or Hulu have free trial options that could give you free access to a large number of movies or TV shows for a limited period of time. The speakers suggested that keeping things light with some comedies can be a good way to reduce anxiety.

Remember that you will need more patience and more communication than usual during these challenging times. Be kind to your loved one and also to yourself. While COVID-19 is concerning, remember that most people who become infected with this virus will recover without needing care in a hospital. “This too shall pass.”

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Question & Answer Session

Q: The person I’m caregiving for (my husband) is very aware of what is going on and he is panicked that I will get sick, given that he is completely dependent on me for all his care.

A: As caregivers, this may be the most challenging time for you and your loved one; you will need to be as patient as possible. If they have any form of dementia, you may need to repeat your instructions daily or frequently, or maybe help them yourself more directly than usual. Just because they have dementia doesn’t mean they won’t pick up on your anxiety and the news.

Try to make alternative plans for the loved one’s care if you the primary caregiver do get sick.  

Knowing a plan is in place can alleviate some of their anxiety – and yours. Talk realistically with your husband about his concerns.

If your loved one lives in a care facility, remember that staying away is an act of love – you are protecting them. Explore other ways to communicate with them, such as phone or video chat.

Q: What is the definition of an “older adult?” I keep hearing different things about who is considered “high risk” in terms of age.

A: There are a lot of different definitions, such as over 65. Dr. Sklar says those 60 and over should be taking precautions. In some communities, grocery stores are opening an hour earlier than usual for those in this age group to shop without coming in such close contact with others.

Q: In a group home, is quarantining a sick individual in their room sufficient, or can the virus spread through the ventilation system?

A: What we know about the virus is changing daily. These facilities are taking every precaution they can with sanitizing, social distancing, quarantining people in their rooms, and these measures seem to be effective right now.

Q: Any directive on spa and hair care services?

A: We are seeing salons and spas closing around the country. We will likely continue to see more of that happening, but it depends on the city and county where you live, as well as the number of cases in your area. 

Q: How long does the virus last on surfaces – such as newspapers? Grocery delivery bags? How do we protect ourselves without getting over-anxious and panicking?

A: There has been a confusing lack of consistency in the news reporting about how long the virus can survive on surfaces. However, there have been no cases that we know of in which someone contracted the virus from this type of contact, rather than from contact with a person. Wash your hands frequently, often, and don’t touch your face.

As for not panicking, remember that we aren’t practicing social distancing because of fear that we will contract the virus. We are doing this to stop from possibly spreading the virus to others.

How much caution is too much? That depends on your risk factors and situation. Keep washing your hands if you are concerned about touching items such as newspapers and grocery bags.

“Like you’ve been slicing jalapenos and you’re about to put in your contact lenses”

Q: For those who work in healthcare professions (we are an RN and a dietician) and are at high risk of becoming carriers of the virus, what precautions should we take when we get home? Should we avoid seeing our parents, whom we usually help out a lot? Purell on the patio? Taking off our clothes when we get home?

A: Dr. Sklar answered: You should isolate yourself from your parents. I have offered to get groceries for my elderly relative who is 88 and whom I usually see regularly, but I am not visiting her anymore for now. I use hand sanitizer first thing when I get in my car. Then the first thing I do when I come home is to wash my hands. When I get inside, I take off my clothes and do more laundry than usual, on a daily basis. I wash my hands thoroughly again, paying close attention to each finger, the backs of my hands, and nail beds. I use Lysol for my external door handles and “high-touch” surfaces like light switches. If you live in a cold region and wear gloves when out and about, consider washing those each time as well.

The main takeaways:

We all need to do our part to “flatten the curve” – meaning reduce the spread of the disease and slow the number of new cases that are occurring, to avoid overloading the healthcare system. We have seen in other countries that the measures mentioned in this conference call to reduce the spread are helpful. Think of a car traveling down a road – if there’s a sinkhole in the road, the car can’t pass. If we aren’t out in public, the virus’s spread is interrupted.

Try to keep yourselves in good health. Eat well, stay hydrated, sleep well, exercise, and try to reduce stress. Some good moments may come up from this difficult situation, such as creative cooking, spending quality time together, playing board games, or reorganizing a closet.