Long COVID: Support for Caregivers

Support for Caregivers

For members: If you’ve found it difficult to explain your condition, needs, or symptoms to others, this article can help you gather ideas for how to have those conversations.

For caregivers: If your friend, family member, or loved one has been diagnosed with long COVID, you may have more questions than answers. Though it can feel overwhelming, there are many simple things you can do to help.

First, What Is Long COVID?

Here is how the Centers for Disease Control and Prevention (CDC) describes long COVID:

“Some patients who have been infected with SARS-CoV-2, the virus that causes COVID-19, have new, recurring, or ongoing symptoms and clinical findings four or more weeks after infection, sometimes after initial symptom recovery.” 

Although they all refer to the same thing, long COVID has many names. They include chronic COVID, long-haul(er) COVID,  long-term effects of COVID, post-acute COVID-19, post-COVID syndrome,  as well as some other more complex terms used by researchers. 

As you read the different names of long COVID, the terms within them are very telling:

  • Chronic = long-term

  • Post-acute = after short-term COVID infection

  • Syndrome = group of symptoms

Long COVID is long-term - with a group of symptoms - and follows short-term COVID infection. 

What Are the Most Common Symptoms?

Long COVID symptoms vary from person-to-person, both in type and severity. Still, symptoms you may hear about most often are fatigue, post-exertional malaise - PEM (extreme fatigue even after minor physical or mental tasks), and brain fog (trouble with focus and memory). More examples of commonly reported symptoms include headaches, sleep disturbances, and muscle aches. However, as long COVID can impact many different cells, tissues, and organs in the body, individuals with long COVID may experience a wide range of possible symptoms.

What to Expect

Your friend, family member, or loved one is likely experiencing unexpected symptoms, perhaps for the first time. As part of their Goodpath program and long COVID management, you may see your loved one practicing the following tactics for managing symptoms like fatigue and brain fog:

The Four P’s: Planning, Pacing, Prioritizing and Positioning

  • This concept is an approach known to be effective in managing chronic conditions such as chronic fatigue syndrome/myalgic encephalomyelitis, rheumatoid arthritis, multiple sclerosis, etc. It can be hugely impactful for individuals with long COVID.

    • Planning: Planning out their days in advance, including tasks or errands to be completed, is often essential for those with long COVID. It is also important to note that plans may change throughout the day. It is crucial to remain flexible and be realistic about what can get done throughout the day.

    • Pacing: It is important for individuals with long COVID to schedule in rest breaks throughout the day and to balance difficult tasks with easier ones.

    • Prioritizing: Prioritizing what is most important is key. Your loved one may ask you for help with lower priority tasks so they can focus on others, or may ask for support with high priority tasks to ensure completion.

    • Positioning: Body positioning can impact your loved one’s fatigue. Changing positions throughout the day can help improve muscle tension and stress. Your loved one may ask for help moving heavy objects out of the way so they can get into a comfortable position. Or, they may ask for additional pillows or blankets to increase comfort.

Reading and writing practice

  • Some people dealing with long COVID may find it more difficult to read and/or write than usual. Trouble reading and writing may be due to brain fog, which may impact their ability to:

    • Concentrate

    • Pay attention

    • Remember

    • Understand

    • Problem-solve

    • Complete tasks

  • As part of their Goodpath program, your friend, family member, or loved one may be provided with ways to exercise their brain via reading or writing practices. These activities will encourage starting small – by reading a popular magazine, for example – and slowly building up to more difficult reading, such as work-related content.

How You Can Help

Patience

  • Be understanding and patient with your loved one. Chances are, they are experiencing symptoms that you will not be able to see, like fatigue, anxiety, or pain.

  • Certain symptoms, like brain fog, may slow things down. If your loved one cannot remember a word, they may want to pause the conversation until they come up with it.

Validate symptoms and challenges

  • Long COVID symptoms are very real. However, many individuals have felt dismissed during their journey with long COVID. It is important to validate your loved one’s experience.

  • Dealing with long COVID can sometimes lead to mental health challenges like anxiety or depression. In supporting your loved one, you will be providing invaluable help.

Acknowledge progress, big or small

  • When someone deals with long COVID, making progress can mean many different things.

  • Progress is not always linear: just because your loved one did something one day does not mean they will be able to do it the next day.

Support with medical care

  • Managing long COVID often means attending many medical appointments. Your loved one may see a primary care physician (PCP), as well as multiple medical specialists, depending on their symptoms. Providers serving individuals with long COVID may include neurologists, pulmonologists, cardiologists, psychiatrists, sleep specialists, physical therapists, and more.

  • Keeping track of multiple appointments can be overwhelming for individuals with long COVID, especially if they deal with disruptive brain fog or fatigue. Your loved one may ask for support with scheduling appointments, managing medical information, or communicating with providers. Offering your assistance with these tasks can make a world of difference.

    • How else can you help? → Other ways you can support your loved one with their medical care may include: offering to attend appointments (when possible) and take notes, offering to speak with insurance companies or billing offices when needed, or offering to assist with medications (pickup, management, etc.)

Assist and encourage

  • Many individuals with long COVID may need modifications and support in order to complete certain tasks or activities. However, they may also feel frustrated that they cannot do things in the same way they used to.

  • Sometimes your loved one will need you to help them by completing tasks. In other situations, it may be more valuable to make things easier for them to complete these tasks on their own. This may look like lifting furniture to make cleaning easier, prepping ingredients to make cooking easier, folding clothes to make doing laundry easier, etc.

  • Individuals with long COVID want to feel better and find their new normal. You can help your loved one by encouraging them as they make progress, while also providing them with the support they need on a day-to-day basis.

    • A note on independence: Individuals managing long COVID and related medical concerns may experience a loss of independence at some point after diagnosis. Symptoms like brain fog, fatigue, or shortness of breath may push them to rely on others more than usual. Helping your loved one when they need it, while supporting their autonomy wherever possible, can help boost their confidence and quality of life.