COVID @ Home

A collaborative guide to COVID-19 care

This website started as a way to share our early research regarding the COVID-19 pandemic. We were trying to write down for ourselves and our friends what to do when so many people were going to get sick. Much of what’s discussed here may be common sense to some, but we felt it’s still good to have some checklists and information for various stages of illness in one place. We consulted with nurses and doctors, but this site was created by the non-medically trained, trying to puzzle together what makes sense in our new normal.

PLEASE READ THIS

To be clear: LISTEN TO LOCAL HEALTH AUTHORITIES, DOCTORS AND NURSES when given the choice between that and something you found on the internet.

Information on this website is provided for informational purposes only and is not meant to be a substitute for advice provided by a doctor or qualified healthcare professional. Patients should not use the information provided here for diagnosing a health condition, problem or disease. Patients should always consult with a doctor or other healthcare professional for medical advice or information about diagnosis and treatment.

IN EMERGENCIES, DIAL YOUR LOCAL EMERGENCY TELEPHONE NUMBER.

As we started writing for this site in Berlin, Germany in the second week of March 2020, much about the virus was still unclear, but numbers of infected and dead were rising steadily, most recently in Italy. Whether the virus has caused total crisis where you are or not: It is time to think and prepare.

This guide is based on the assumption that in the coming months, more people than usual will either become ill or have ill people in their lives. Let’s all hope for the best, but we’re going to assume that doctors and hospitals are going to be very busy if not overloaded. We have to confront the possibility that some of the people who would normally be cared for under medical supervision might need to be cared for at home. We hope some of the information here will give you some confidence in dealing with this disease, which in and by itself will reduce the load on doctors and nurses who, from the looks of it, will be quite busy in weeks and months to come. At the same time, we hope to give you information that helps you tell when it is time to get professional medical help. Getting large amounts of people to get that balance right may make all the difference in the time to come.

 

What this guide is not…

We try to provide a large amount of general helpful tips for dealing with COVID-19 during the various stages in which it might affect your household. What we cannot do is provide up-to-date information that is specific to where you are. We will try to tell you when we think you need to seek up-to-date local information in text boxes such as this.

Note that any advice from official sources you may find could be outdated as soon as a few days after it is issued, so always try to find the latest guidance and advice you can. Refer to local broadcast media and trusted information on the internet. Your local health authorities know the situation on the ground where you are, and should be talking to the public through the media.

That said, we are seeing various levels of quality in official response. Sometimes there will insufficient capacity to supply everyone with individual help and advice, for example because hotlines and testing centers are overloaded. Help may well be unavailable at some times. In this text we will just keep going, giving you the best information we found in our research. This doesn’t mean we think such general information as is on this site could be better than local help from trained professionals. Treat the advanced chapters of this website as a last resort: much better than nothing, but by all means get local help from actual professionals if you can.

Also note that we do not sugar-coat. This site is written by and for adults who can handle thinking through the consequences of our current global predicament. There is no reason to panic, but the situation is serious enough that we feel everyone should have access to the best information we could find.

Some of the authors of this website are not known as great fans of government and authority, but at this point trust in the public health authorities is vital. Where there are discrepancies, trust reputable sources such as:

For the more research-minded, we compiled a list of additional resources.

Know the Facts:

Remember that there is no difference in potential infectiousness between friends and strangers. There is no race, ethnic group, or nationality that is innately more likely to get or transmit the virus than another. Try to help others when you can without being in physical contact with other people unnecessarily: A lot will depend on whether the social fabric of our society holds. Slowing the spread of an infectious disease is rarely absolute. But taken over society as a whole, our efforts still work when everyone does what they can, within their limits.

You can help make this site better

If you see something that could be better, please click here to file an issue. We promise to do our best to respond quickly. (As you can see there, the back end of this website is on Github, so if you know that environment you can also send pull-requests or think of other ways to help.)

To be successful, this will need to be an expanding, collaborative effort.

  

Level 1 – Healthy

Don’t Get Infected - And Don’t Infect Others

You might feel fine. But the virus can spread before you show symptoms. Some people can spread it without ever showing symptoms. Some people might have more severe disease after more significant exposures due to increased initial viral load, so it’s worth preventing more exposures even if you think you were already exposed. Overall, follow the instructions from authorities. This includes some of the by-now familiar guidelines for social distancing:

Stay home

Use appropriate hygiene

Take care around food

Take care going outside

Here you will need up-to-date local information. Walks outside may well be illegal where you are (for a time), while much of this advice may actually be mandatory. You may be asked or required to do other things not on this list, like having your temperature taken before buying groceries. Let up-to-date, local information guide you where there are conflicts between that and this text.

Stay Healthy

On top of this, you can do things to stay as healthy as possible:

Psychological well-being

This is going to be rough on all of us at times, and it is going to affect each and every one of us differently. Isolation in general can make every possible sort of mental health problem worse. Furthermore, this is a situation where it’s completely normal to worry about being or getting sick. Having COVID-19 can also be quite psychologically stressful for some. And then there are special stressors that many will experience, such as the psychological toll of the trauma of an outbreak like this on most healthcare workers, particularly emergency department professionals. Here are a few recommendations and tips for psychological well-being in the context of the COVID-19 pandemic, taken mainly from the Austrian Federal Ministry of Defense (go figure!), summarized and expanded on briefly below. None of this will be right for everyone, but (hopefully) you know you well enough to find what is right for you:

Prepare

And on top of that, you can prepare so that you are familiar with the things that you will need to do when disease comes knocking. Read the rest of this guide. It is statistically unlikely anyone in your household will develop life-threatening complications, and hopefully there will be plenty of medical care for everyone. But in these times it doesn’t hurt to be a tiny bit more ready for the worst-case scenario.

Remember, at the same time, that there is no reason to panic. Take a deep breath and continue your regular life as much as possible.

Get the things you need

We made a shopping page that lists handy things that may help you care for yourself and others.

Reach out

If you live alone, now is a good time to think who you can ask to check on you regularly if you become ill. If someone you know and love lives alone, now is a good time to be in touch to see how they are doing.

Existing Medical Conditions

If you or your loved ones have existing medical conditions, now is the time to read up on how these conditions could be made worse by COVID-19 / pneumonia. Reputable sources for health information about a wide variety of conditions include the National Institutes of Health, the NHS, and Mayo Clinic. You / they should also make extra sure that you / they have plenty of all of your / their necessary medications. Make sure you have all the information relevant for treatment (contact info of doctors, recent lab results, how much of which drugs the patient is taking). Assume for a moment that your regular doctor isn’t there and you have to explain it all to a new doctor who has very little time. A recent timeline of visits, results, etc. would be nice. What should you not forget? Write it down now!

What sorts of existing medical conditions are especially likely to make you / your loved ones vulnerable to more severe COVID-19 problems?

Preventive Care

If the news is full of stories of hospitals being overloaded with COVID-19 patients where you are, then ignore the text below and let the doctors and nurses work. Except when local health authorities tell you otherwise, naturally.

If the situation is still somewhat normal where you are, this may be good moment to briefly ask your doctor what (if anything) she/he thinks you should do now, and what you should do if you fall ill. If you have not yet been vaccinated for the seasonal flu, pneumococcal pneumonia, or meningococcal meningitis, now may also be a good time to ask your doctor if you are a candidate for those vaccines. Getting these vaccinations now if your doctor advises it could help prevent another infection from compounding problems that may be caused by COVID-19, should you be infected later.

During pandemics, it is typical for childhood immunizations, maternal healthcare, and healthcare for chronic health conditions to get cancelled or delayed because doctors, nurses, hospitals, and the rest of the healthcare system may be overloaded, and because people may be afraid to go in to doctors’ offices or hospitals for fear (sometimes rational) of being exposed to disease. In case your area is not yet greatly affected by COVID-19: Is there any normal childhood vaccination you want to be sure your child gets while he or she can? Any prenatal care or routine care for a chronic health condition you can get now instead of in a month? What about other conditions that are common ailments for you or your loved ones? Anything you can do to prepare to care for yourselves without normal medical care access in the coming months, in case it becomes harder to get time with doctors and nurses because they are overwhelmed? Do it now.

That said, it is never time to delay needed, urgent medical care. Not even during a pandemic. If you develop symptoms for which you would normally seek urgent medical care, then please find a way to seek that care promptly even if the normal avenues are closed or you are afraid of being exposed to the virus in a healthcare setting. This is especially true if you develop signs of a stroke. Those signs are easy to remember with the acronym FAST: Facial drooping, Arm weakness, Speech difficulty, and Time, as in, it’s time to get help. Sudden strokes of a dangerous kind appear to be much more common in otherwise healthy, young adults due to COVID-19, including in people who are only mildly symptomatic or asymptomatic but positive for COVID-19. Prompt stroke care is essential to prevent more permanent damage. This is a case where getting needed care as soon as possible is a form of preventive care, too.

Life, death, dignity, and choices

Let’s be straight: COVID-19 is potentially lethal, and this is even more true if you are middle-aged or older (because there is a strong age gradient in risk of death from it) and / or have existing medical problems (especially ones affecting the lungs, heart, or immune function). We hate to bring up some potentially depressing things right here in Level 1, when you and your loved ones are not even infected with the virus. But, if at all possible, you want to be level-headed and not rushed when you think about these things.

First, remember not to panic. Of all the people who get infected with the virus, many will show no symptoms. The majority of people who do show symptoms will have a mild or moderate version of the disease. The majority of the people who get sick do not need to go to hospital. Even among risk groups such as the elderly and people with multiple existing medical problems, most will survive. That all being said: the sad reality is that some COVID-19 patients will develop severe respiratory problems, and of those, some will die.

Many people have previously thought about how they would like to die when the time comes. We know most people (ourselves included) hate to think about death, but here are a few things that may guide your thinking:

  

Level 2 – Emerging Symptoms

Notice if you suffer anew from any of the following, most common first COVID-19 symptoms:

Fever seems to be the most common symptom – but it’s not universal. Early data showed that gastrointestinal symptoms (diarrhea, nausea, vomiting, abdominal pain, loss of appetite) were uncommon. But more recent evidence suggests that they are common, and can even precede respiratory symptoms. Initial symptoms may also include joint / muscle pain, headache, chills, dizziness, nasal congestion, and sore throat. Loss of smell and taste lasting for several days can start early or later in the infection. So can skin symptoms like a rash on the back, chest, or stomach (in about 20% of cases in one sample), or small red or purple-colored lesions around the tip of the toes (especially in children and adolescents).

However, common colds, flu, and allergies can also cause many of the same symptoms. In fact, nasal congestion, itchy eyes, and sneezing most likely indicate a condition other than COVID-19, such as allergies. There is no single, unique COVID-19 sign or symptom. There is no way to know for sure whether you have COVID-19 without testing for it.

Is COVID-19 spread in the community where you live? Or have you been to an affected area or been around someone who was in an affected area? Then your symptoms could very well be COVID-19. But remember: In many areas, the odds that it’s something else will still be greater.

Note: Fever is not subjective. You will need a thermometer (or two, in case one breaks), and to keep track in a log of at least daily temperature. If you choose to take temperature internally (i.e., in the bottom / rectum), it will be more precise. Be sure you have enough wipes and alcohol to clean the thermometer after each use. If taking temperature orally, don’t eat or drink for 20 minutes beforehand. Either way, note the method in your illness diary (more on this below), so that healthcare personnel know which it is. (Around .7° Celsius or 1° Farenheit is often added to oral temperatures.) Here are some good instructions for how to take an oral temperature.

If you don’t have symptoms

Some people may be exposed to, carry, and infect others with the virus – without ever showing symptoms themselves. These people are asymptomatic carriers. They seem to be common; they may even number around one in four of those infected. Unless widespread testing is available where you are (which is currently a small minority of places), it may not be possible to determine if you are one of them. This is one of the reasons why everyone should currently be following the advice of public health authorities that generally includes social distancing measures covered in Level 1.

If you have symptoms

The single most important thing once you have symptoms that might be COVID-19 is to stay at home, or to go home if you discover them while not at home. Call in sick. Stay away from people as much as possible and go to a separate room if you live with others. If you live alone, let someone (friend, family) know that you are ill and will keep letting them know how you’re doing.

Symptoms? Maybe you need to register…

As this point you need up-to-date local information. Your health authorities may want to know if you have symptoms. Reasons for this may include population monitoring to see where the virus is, planning the government’s response as well as opening a channel to follow up with you personally. There may be a phone number to call if you have symptoms, or a website to visit, or an app to download. Just figure out what the authorities in your area want you to do as soon as you have isolated yourself from others.

Diagnosis

You will want to know whether what you have is just a cold, a flu or actual COVID-19. There will be different policies surrounding testing for COVID-19 based on where you are and what stage of the pandemic your area is in. Check online, call official hotline numbers, follow official guidelines. If testing capacity is limited, you may not qualify for testing, even if you have all the symptoms of COVID-19.

You may find that the official information on getting tested doesn’t always match the reality on the ground. It may be impossible to get through, the lines may be way too long, the waiting conditions may be unsafe. (You don’t want to get COVID-19 from trying to find out if you have it.)

In some cities, your regular doctor will come to your home in full gear to swab your throat. In other places, there are drive-throughs. There are also Do-It-Yourself test kits you can order by mail where you perform your own throat swab and send it to the lab for testing. The availability of all of these methods will differ depending on where you are, who you are, what stage the pandemic is in and many other factors. We cannot possibly help you further than to tell you to inform yourself as soon as you have isolated yourself.

Under no circumstances should you just show up at a doctor’s office or a hospital unannounced if you experience symptoms.

Remember: This is for your own protection as well as that of the other patients. Hospitals are bad places to be until you absolutely have to be there: You run the risk of getting additional infections that, when bacterial or fungal, are much more likely to be resistant to standard treatments due to the nature of the hospital environment. Also: Many hospitals are going to be overloaded, so waiting times may be astronomical.

Don’t Panic

For most people, this will be as bad as it gets. You’ll be a little sick, and then you’ll get better. Done.

At the same time, some people will not be so lucky. Even if only a relatively small percentage of those affected need medical care, this will put a serious strain on doctors, nurses, and available medical resources. We can all help them by staying home whenever possible.

The “Worried Well” is a medical term for people who visit the doctor when they are not really (all that) sick, because they need reassurance. The coming weeks and months are not a good time for that. This website aims to give you more confidence and preparedness in caring for yourself, friends, and loved ones until you / they actually need professional help.

Consider using relaxation techniques to slow a rapid breath or heart rate that may be partially due to anxiety (or just to chill out):

Self-quarantine

Until tested and depending on where you are and where you have been, simply assume the patient (you? a family member?) has COVID-19. That means self-quarantine at home. No more visitors, a sign on the door, and the patient should not go out unless there is no chance of meeting anyone. Different areas have different standards for what it means to self-quarantine when there are other people in the household. If possible, you will want to err on the side of safety and try to get everything delivered for 2 weeks. Things may change, as in some areas the virus will become so common (endemic) that many people will have had it. There is no telling at what point various authorities will stop testing every potential infection, and it will differ from region to region.

Garbage

During this time at least, err on the side of caution when it comes to trash. Used tissues, paper towels, and other possibly contaminated disposable items should be bagged in disposable trash bags, tied securely, and put aside for 72 hours prior to external disposal. Some places also recommend putting these items in a second disposable trash bag. If you use communal garbage bins, disinfect the handles when possible before and after use. Wash your hands after handling trash and bins.

PPE

Now at the latest is time to think about Personal Protection Equipment (PPE). If you can get masks AND IF MASKS ARE NOT IN SHORT SUPPLY FOR DOCTORS AND NURSES WHERE YOU ARE, wear one outdoors. You are not supposed to be outdoors when you have symptoms, we know. But we mean even just when taking out the trash. If you have no mask, at least do something. Make your own using our mask-making template. Wrap a towel around your nose and mouth, breathe through a scarf, anything is better than nothing. Here are a few recommendations for PPE in the context of the COVID-19 pandemic, summarized and expanded on briefly below:

Family, flatmates, etc.

Seek up-to-date local information if you live with others. The authorities may provide you with different or more detailed instructions, advice, or even PPE materials.

Here are some general suggestions and tips for dealing with family and flatmates if you have or suspect you may have COVID-19:

In most places, there will probably come a time when the number of cases skyrockets, many people have already had COVID-19, and authorities will no longer keep records of who has had it and who hasn’t. The basics then remain the same: Try to protect other people, especially those middle-aged or older and people with existing illnesses, as much as possible. And try to minimize the spread whenever you can, as best you can. Remember: The more we can slow or stop the disease’s spread, the better it is for everyone. Because by helping to slow or stop the spread, you help lessen how overwhelmed the healthcare system is going to become. That in turn increases the proportion and number of people who need medical care (for any reason), who are able to access it. This helps doctors and nurses save more lives.

Diary

When symptoms first start is the right time to start an illness diary.

A few times a day, preferably at somewhat regular hours or points in your normal routines or rhythms (e.g., every morning before making coffee or tea), measure temperature, even if you don’t feel like you have a fever (yet). Weigh once a day if possible. Also note respiratory and heart rates in breaths and beats per minute. It will get you used to doing these things, give you practise, and (if you start early) give you some idea what (more or less) healthy values for you look like. Not necessary, but extra points for blood pressure and oxygenation (Devices to measure those are cheap, see the shopping page).

Then write down any symptoms the patient has. If he or she is in pain, where and when is the pain, and how bad on a scale of 0 (no pain) to 10 (worst pain imaginable)? How bad is the cough? What color if there is mucus being produced? Be sure to note what medication, if any, the patient takes.

Paracetamol (also known as Tylenol or acetaminophen) is a good choice for fever and pain suppression. Keeping an illness diary will also help you to keep track of how much you’ve taken, when, to ensure you treat fever adequately without taking more than the recommended amount in a 24-hour period.

Printable illness diary

We made a printable illness diary that you can use to write down all the information you collect when you take temperature, breathing rate, etc. Please check out the form and our webpage about it via the link above.

Contact lenses

Even when you are not that ill yet, it is much better to use glasses if you have them, and stop routinely putting in contact lenses in the morning. You do not want to touch your eyes more than you have to because they may get infected. If and when you do get more ill, you do not want to risk forgetting that you have them in.

Get healthy again

Feeling better?

If your symptoms go away, that doesn’t mean you should end your quarantine immediately. You need up-to-date local information again to see whether the authorities want you to register as healed, especially if you tested positive earlier. Depending on availability and local policy, you may need to be tested again. Your local health authorities may provide you with specific advice on what to do next. If so: Follow it.

Absent of up-to-date local instructions from authorities, you should err on the side of safety and try to stay in isolation for a little longer than officially indicated. The World Health Organization recommendation is to continue isolation for at least two weeks after symptoms disappear, even if you are no longer feeling sick.

If you managed to get tested, yay! You now know that your body (presumably, keep watching the latest science on this) has built immunity. Which means that this thing is over for you, and, if you are young and healthy, also that you are a more logical choice to help your family and friends when they get sick. Depending on what state the world is in, you may want to inform your employer and others who might depend on you that you’ve had it, so they know you’re immune.

  

Level 3 – Bedridden

All the good care in Level 2 has not worked and things are getting worse. Doesn’t mean you did anything wrong, just keep going. Except you’re getting weaker, and you’re not just coughing anymore, but you feel like absolute crap (doctors call that “general malaise”), things hurt, and you want to be in bed most of the time. It’s easy to forget to eat and drink.

Now that you are really getting ill, it’s time to let your regular General Practitioner / doctor / primary care physician know if you haven’t spoken to him/her already earlier. The doctor may do house visits or have a protocol to assess you over the phone or via videochat. There may be additional advice or guidelines your doctor will give you. Doctors know their patients and can tailor advice to the case at hand. So follow any advice, also if it contradicts any of the more general information given here.

Ask the doctor or otherwise try to use reliable local information to see what, if anything, is expected of people with worsening symptoms where you are. The health authorities may have a website, app, or other mechanism to register a worsening of symptoms. This could be important for keeping an eye on the pandemic, but also to figure out who needs additional care.

If you have no primary care doctor, you will need to seek up-to-date local information on what help is available to you. If all lines everywhere are busy – which is certainly a possibility during the peaks of this crisis – do not panic, just keep trying.

Now that you are sick

A typical day

At this stage, a typical day might look something like this:

You get up, weigh, and note weight in illness diary. You might also want to take your temperature first thing, before eating or drinking, especially if you are taking temperature orally – and note it in the illness diary, too.

Then, start drinking fluids. Not too much caffeine or sugar. As much water and herbal tea as you like. Remember you want to drink at least 2 liters (around 8.5 cups) and up to 5 liters a day.

Air out your home as much as possible, perhaps while the water for your morning tea or coffee is boiling. If you have the energy (and enough sheets), consider changing your bed linens if they got sweaty / otherwise soiled. Next, have a quick shower if you’re able. Staying clean can help you feel better mentally and emotionally, as well as physically.

Eat a small, nutritious meal (piece of fresh fruit? handful of salted nuts?) – something that sounds good to you. This is also a good time to take paracetamol (also known as acetaminophen) for fever / pain if you really need it, and note the dose and time in your illness diary.

If that was already enough exertion, take a rest. Nap whenever you can – sleep is crucial for healing. If you’re not sleepy but need to rest, then try to rest sitting up to give your lungs a better chance to drain. If you’re still upright, now is a good time to steam to help your sinuses / airways open and mucus to drain.

Speaking of being upright, remember to ventilate your room and breathe in the fresh air. Lift your arms over your head to fully expand your lungs on the inhale. Try blowing up a balloon to fully exhale.

Keep drinking throughout the day. Some people find it helpful to empty and refill a liter bottle of water or a teapot that holds approximately a liter, so that it’s easier to keep track of roughly how much you have drunk. This also makes it easier to keep water by the sofa or bed while you are resting.

Throughout the day, check in with yourself about fatigue (sleep as much as possible), hunger (eat small, nutritious meals), thirst (drink whenever you feel like it), and temperature (take care to keep warm enough). If you feel up to it, and only if you feel up to it, move your body (e.g., go for a short walk as long as it’s still permitted where you are, or get up and dance to a favorite song).

Finally, you want to be alert to signs that your condition may be worsening and you may need more care. So after taking basic care of yourself, then check in with other people around you who know that you are really ill. Let them know how you are doing – and if you need help, ask. Especially let someone know if you start experiencing more severe symptoms (see the next section).

The fork in the road

Current guidance in many places is that COVID-19 patients who cannot take care of themselves (anymore) are treated elsewhere. Given that the patient’s condition can worsen quickly, there are good reasons to be cared for by medically trained professionals who can keep an eye on you – while (hopefully) having adequate protection and training to not get infected themselves. Letting the experts do it instead of staying home also protects your loved ones from infection.

We are seeing this break down in places where there are a lot of cases, with some very ill patients deemed “not sick enough” to go to the hospital, and no other sorts of centralized quarantine facilities with medical staff (yet?) available. This text will continue assuming the COVID-19 patient needs to be cared for at home. This is not the optimal situation. If possible, you should consult with a doctor when you feel you need help before risking anyone becoming infected while they take care of you.

Tell other people around you that you are really ill and are mostly in bed. Talk to someone you trust about how they may have to take care of you. Have this person or these people read this document. If you have people in your environment who have already had COVID-19 (something that will be increasingly common as time goes on), such people would naturally make the best caregivers as they presumably will be (at least partially) COVID-19-immune. Otherwise try to judge what is wisest in your circumstances. By all means do not wait with this until the very last moment, because if the disease progresses, you will get short of breath – which inevitably will also affect your ability to talk and think clearly. Everyone at this level, especially patients who live alone, should really have someone checking on them regularly, because the deterioration in respiratory function can be very fast, especially in the second week.

Others taking care of you

If non-medical people are going to need to take care of you (or if you need to take care of someone who is ill), make sure adequate protection is used to the extent possible. At this point, patient and caregiver need to be closer together, so use all the protection you can have: respirator / mask, protective gown / raincoat, protective glasses / face shield, gloves. Train the proper procedures for putting these on and taking them off, going through that in your head over and over again.

From now on in this text, we will assume that you’re the caregiver. Read ahead for signs that indicate Level 4. The purpose of care in Level 3 is also to monitor the patient more and more closely so as to catch early any signs that the patient urgently needs expert medical care. For instance: If the patient is not able to drink at least 2 liters of fluids per day, you should (kindly) insist. Dehydration is a medical condition, and without a daily minimum, you’re quickly in Level 4.

In most cases, however, the patient will improve after a few days or at most a week. Just stay with it. Once the patient gets a little better, care may be done by the patient him- or herself again. Don’t be in contact any more than you have to, minimise the risk of becoming infected wherever possible. Make sure the illness diary is kept until all symptoms are gone, and quarantine is kept up until the patient has been symptom-free for 14 days. If you have been caring for the patient, self-isolate again. Your own two-week self-quarantine period now begins.

Care work

A large part of the work you are doing at this stage is care work, which may overlap with nursing but does not require specialized training. Remember that people who need help with basic self-care due to illness may be embarrassed to ask for or accept it. Be gracious. Everyone needs help sometimes. Think how to make the patient physically, mentally, and emotionally more comfortable and well; you might do this by asking yourself what you would need in their position, by watching for cues that may indicate discomfort (e.g., shivering, sweating), or by asking how you can help.

Some possibly useful behaviors include:

Illness diary

As mentioned in the previous section, you might want to use this printable form, or make your own.

At this stage, measure the vital signs often, log them in the illness diary, and watch out especially for and note symptoms that might suggest worsening. Read the next section for more detail, but these include dizziness or rapid heart rate (drink more and eat something if you can), rapid breathing (elevate head while lying down or lower it to the table while sitting up for easier breathing), and a blue tint to fingertips or lips (cyanosis – get fresh air, get warm, and check blood oxygenation if possible).

If you think the patient’s condition might be worsening, your illness diary might expand to include the following:

If the patient’s condition seems to be worsening, skip to the next section.

Go bag

If your condition deteriorates to the point that you / the patient needs to go to hospital, you will not have time or be in the mood to think about what to pack. So prepare beforehand a small bag with a zipper / firm closure that contains:

It would be ideal to have name and date of birth readable on the outside of the bag as well.

When it is time to go, remember to put glasses, phone, charger, and today’s page of the illness diary in the bag before you go. Remember that there will likely be no visits allowed in hospitals during peak pandemic phases, and COVID-19 patients (and others) may be in far-away makeshift hospitals or quarantine facilities staffed with medical professionals. We put your own essential prescription medicines on the list, although they are generally provided for you by the hospital when you are in the hospital. It’s just not always clear where you may be taken, or what level of care they will be able to provide, during peak pandemic times when the hospital system is likely to be overwhelmed. You may also want to download the free Patient Communicator app that could help you communicate in a hospital setting, even if you need to be intubated and therefore can’t speak.

  

Level 4 – Professionals Take Over

As symptoms get worse and the patient deteriorates, the frequency with which measurements are taken should increase. At this point, your log should contain temperature, respiration, and heart rate every few hours. Be especially alert for rapidly worsening shortness of breath, rapid breathing, and low blood oxygen level, as these can be signs of developing acute respiratory distress syndrome (ARDS), which requires immediate medical attention.

You should interpret any of the following as a medical emergency:

Loss of consciousness

There’s different levels. When patient loses consciousness, make a note of whether the patient responds when you call their name (Voice), when you pinch the shoulder forcefully (Pain) or whether he/she does not respond at all (Unresponsive)

If loss of consciousness is brief, you might (if patient quickly recovers and is fully awake again!) encourage the patient to eat and drink a bit, and freshly ventilate the room. But loss of consciousness is serious; get help.

Cognitive problems / confusion

You probably know the patient, so you should be able to tell without any fancy tests if and when he/she is not with it anymore. Sudden onset of confusion is trouble. Seek medical help.

Too high or too low respiration rate / shortness of breath

Count respirations per minute by holding your hand close enough to feel the patient’s breath, watching his or her chest, and / or watching his or her abdomen, while holding a clock with a second hand or a digital watch / phone stopwatch. Respiration rate (RR) should be between 12 and 20 breaths per minute.

Immediate home care for respiratory problems may include ventilating the patient’s room, and trying different breathing techniques and positions that can make breathing easier, too (see Level 3, Care work).

If you or the patient are experiencing shortness of breath / labored breathing, seek medical advice.

Low oxygen saturation

If you have an oxymeter (see shopping page), any oxygen saturation lower than 95% may indicate a respiratory problem. If at any stage the patient’s lips or fingertips turn blue (or even mildly blue; called cyanosis), call an ambulance! Anything less than 96%, get fresh air into the patient’s room, get him or her warm, and have him or her lie prone (chest down, back up) if he or she can.

(Also call a doctor if the fingers, toes, or lips turn less blue than this…)

If the patient’s skin gets a lacy purple overlay (also called livedo reticularis) like below (and that’s not normal for the patient), that is also a reason to call for help.

Very low blood pressure

Blood pressure lower than the bottom of the normal range (90 mmHg systolic, 60 mmHg diastolic) is cause for concern. Note that blood pressure comes as two numbers, the systolic and diastolic pressure. If you have a cheap automatic device it should tell you both these numbers. If you have a device, note the systolic pressure on the diary form.

If you do not have a device to measure blood pressure or have trouble getting a reading, then try testing the patient’s capillary refill time instead. Check by placing his or her fingers flat on a hard surface. Use your finger to press down on one of his or her fingernails from the top. The fingernail should lose color. Check how long it takes the fingernail to turn its normal color again. It should take 1-2 seconds. Longer than that may indicate low blood pressure.

Dehydration is a common cause of low blood pressure, so immediate home care may include encouraging the patient to eat and drink, especially foods or beverages containing essential electrolytes like potassium and sodium. Dizziness is a common symptom of low blood pressure, so the dizzy patient will want to be careful while changing positions (laying to sitting up, sitting to standing); fainting may occur. But really, once again, if things do not look right somehow – if blood pressure is very low, or if the patient normally has high blood pressure and it’s looking much lower than their normal – again, get help.

Too high or too low heart rate

Heart rate is easier to measure than blood pressure, and usually high heart rate (above 100-110 beats per minute for an adult) goes with low blood pressure. Smaller adults and children often have normally higher heart rates. High heart rate alone may not be cause for alarm, as it may indicate anxiety or dehydration. Relaxation techniques and drinking / eating something might be appropriate. But once again, values outside the normal range here should cue you to seek medical help immediately. This is especially true if you see rapid breathing along with low blood pressure, high heart rate, and / or confusion.

Very high fever that comes (back) suddenly

If you check temperatures regularly, you will want to be aware that the trend can reverse suddenly, even when the patient seemed to be doing better earlier. Regular measurements are important. A fever that is very high (39.4° Celsius or around 103° Fahrenheit, or higher) is a cue to seek medical advice. So is a fever that goes away and then comes back suddenly.

Coughing up blood

This one is self-explanatory. If you notice the patient coughing up blood or blood-stained mucus, seek medical advice.

Call for help

When any of the above symptoms occur, things are serious! If at all possible, this is the point where you should not be taking any decisions based on a guide from the internet anymore. Do not wait for things to get worse. Call a doctor, or call the emergency number and get the patient in an ambulance pronto. Stay calm and report the situation as it is. Your job is done: You have kept a patient out of the medical system while he or she was just sick. Now it’s time for professionals to handle it. The data you have been gathering should hopefully help you convince the operator, paramedics / emergency medical technicians, and doctors that you are not merely panicking for no reason, and will likely help get the patient the care he or she needs sooner.

  

Level 5 – System Overload

What if the official channels are overloaded?

What we’re unfortunately seeing in some areas is that the system becomes stressed to a breaking point if too many people become sick at the same time. Either you cannot get through, you are told the ambulance is going to take a while, hospitals are not taking new patients at all, or some hospitals prioritize treatment of certain groups of patients (such as the relatively young and healthy) over other groups (such as the elderly and / or people with existing illnesses).

In the event that official means of getting medical help are unavailable, you might want to try to get hold of that doctor you know, the nurse down the street, anyone with medical training and / or experience. If that doesn’t work, depending on the urgency, you might want to mobilize your and the patient’s wider circle. Let people around you know that you have a patient who is not doing well and that you cannot get help. Ask around for doctors or nurses. For example, you might try using Facebook, a grocery store bulletin board, or any other social networking tool or technology that makes sense to you. If you have any spare time after that, organize your diary pages, making sure any doctor who has time for the patient can immediately see temperature records, etc. Try not to seem too worried around the patient, because at this point there likely isn’t anything he or she is going to be able to do.

If you do get through (by phone?), try to stay calm and help the doctor / hospital assess the situation quickly.

In cases where ambulances are the bottleneck and you feel you need one, you will have to make your own judgement whether you want to try and drive to the emergency room, or wait and hope to get through. Plan which hospital you will go to before leaving, and maybe include someone who is not driving who has access to the internet to help navigate – either in the car or on the speakerphone. Please drive safely in any case; the last thing you want is a sick patient in a car accident.

 


 

For now let’s all hope our medical professionals can cope with the case load that is coming to them. Do your part in slowing the disease down as much as possible. Let’s try to all still be there at the other end of this.