For Caregivers and Friends
Helping Your Loved One Through COVID Recovery
You are caring for someone with COVID.
You’re not alone!
When caring for someone who’s suffering from long COVID, it’s natural to feel a range of emotions—fear, frustration, overwhelm, anger, sadness, helplessness, impatience, resentment etc. Nothing is off-limits. You are not alone! We hope this page helps you navigate through this COVID journey alongside your loved one, with grace, hope and humor.
First, the Four Pillars of Health are as relevant for you as they are for your loved one with COVID:
Practice a MINDSET of positivity and kindness toward your loved one and yourself.
Encourage your loved one to REST, and also give yourself the rest you need.
Learn to NOURISH your loved one, and you will also, by default, nourish yourself.
Help your loved one to MOVE in the ways that support their recovery while allowing yourself the space to move and release what you are carrying.
Read on for tips that come straight from the people who helped Amy through her illness and recovery.
Sit beside each other. Listen.
When confronted with a novel virus and the strange symptoms that come with it, it is reasonable that you may not know what t0 do or say.
Here is some advice from Amy’s husband, Cory:
“Our loved one is struggling. They are going through this experience wrapped in fear and so are we. So here’s what I did:
I showered Amy with love.
Although it was tested (not because of her but because of the situation we were in), I showed patience.
I learned how to cook. Amy’s the chef of the house and damn is she good and damn if I didn’t want to disappoint. So I learned how to be a better cook. I cooked every day. It’s a great idea to cook extra and put it in the freezer for the really hard days. AND, if you can’t do the cooking or are feeling worn down yourself, consider asking a friend to set up a meal train.
I was encouraging.
I was empathetic.
Most importantly I listened. I listened a lot. I came to learn that listening was one of the most important attributes. Take time to truly listen to what your loved one is experiencing. I listened to the daily list of symptoms Amy was having. Several were the same everyday and some came and went. What stuck around, however, were the neurological symptoms. Amy would describe her brain as a feeling of swelling, and hot. She called it “boiling brain.” She suffered bouts of psychosis. Her hands felt like latex gloves under water. Water felt weird on her skin. It was the hardest thing I have ever gone through, watching her deal with this shit. I’m usually pretty good at making things better but I felt hopeless and scared. I didn’t know if I was going to ever have the same woman I’ve loved for 16 years.
After I listened, I would sometimes have something worthwhile to say and sometimes I would simply silently hold her hand and cry with her. I couldn’t experience what she was feeling but I know damn well HOW she felt.
During this time there will be a lot of doctors appointments. I mean a lot. There will be a lot of doctors appointments with a lot of different types of doctors because no one knows what the hell is going on or how to fix it so the hope is to find the one special doctor that has the answer. Your job is to be secretary for your loved one. Have a dedicated notebook for this. You will write down the time, day and the doctor you are visiting. You will write down anything that might be useful. Your loved one will ask the questions they want to ask. You also get to ask questions so be prepared. Take good notes and stay organized.
Rest AND movement are essential. Rest time is when our bodies repair themselves. There will be plenty of resting going on depending on what phase of recovery your loved one is in. So let them rest. If you want to learn more about the different types of rest, check out Dr. Saundra Dalton-Smith who is a Board-Certified internal medicine physician, speaker, and author who identified seven types of rest.
Also, if rest means sleeping in separate beds, then that is what you should do. A good night's sleep is imperative for the body to recover from the day's stressors, especially when fighting an illness like long COVID. I slept in a separate room for 10 months. It’s a sacrifice we had to make.
You both need more rest than usual. COVID is an opportunity to practice many different kinds of rest that will help us heal and be resilient.
That said, there will be a time when your loved one has got to start moving again/more. START SSSSSLLLLLOOOOOWWWWW!! We literally would walk around our backyard or to our mailbox and back. That was enough. Then Amy would rest. DO NOT encourage your loved one to do too much at once. You will regret this, I promise. Small tiny doses, slow progressions with rest and food in between. Even though it might have only been to the mailbox and back, be encouraging (because they might be discouraged by being tired by such a short walk) and act like they just won a marathon. OK, maybe that’s a little dramatic but you catch my drift. I’m so happy to report that as of January 2022, Amy is back in a consistent (3x/week) strength training regimen where she is finally able to squat and deadlift again.
Another very important piece to this puzzle is self-care. When safe and appropriate, find time to do something you like to do that will take your mind off reality for a moment. This is hugely important. Luckily, we have a pretty badass home gym so I was able to go in the garage, play some music quietly, and pump some iron. Later on in this weird journey, I was able to go fishing for a couple hours on the weekend. Whatever it may be and whenever it is safe and appropriate, do something for you.
TAKEAWAY: Be patient, be empathetic, learn how to cook, be motivating but not annoying, listen like a motherfricker, be the note taker during doctor's appointments, practice self-care, love them more than you ever have before and know that you’re not alone.
Practice empathy and be creative.
There are chances to learn greater empathy all around us, every day. We think it’s safe to say that COVID has presented one of the greatest opportunities to deepen our ability to empathize with others.
Here is what Amy’s friend Danielle has to share:
“Amy and I lived in the same town for 15 years–the majority of the time we’ve known each other. I was accustomed to our language of support being centered around a physical presence with each other. If one of us was sick, the other could go pick up some food or medicine and drop it off. We could drop little gifts at each other’s doors. We could walk each other’s dogs. We could hug. And, of course, we could always talk with each other.
But, when Amy got COVID, I’d been living an hour north for a few years, and of course, close physical contact was not recommended. I couldn't just run across town with a pot of soup for Amy and Cory. So, I had to find other ways of supporting them and lean harder on the thing we could still do: talk. But this was all new territory. We didn’t know what was happening with her body much of the time, and she was on a roller coaster of horror, like no other.
I wanted to tell her it would all be okay. But I didn’t know if it would be. I wanted to be able to understand what she was experiencing, but I didn’t. So, like Cory and Amy G have mentioned, I tried to become a better listener–a more empathetic listener.
I found myself practicing the “pause” more before I responded to something she had to say. The “pause” is something I learned about in a fantastic parenting book, but essentially, it’s something that I’ve found useful in all parts of my life. I simply take a breath or two (or ten) before reacting to something or blurting out the thought at the top of my mind. This was important with Amy because I always wanted to tell her about symptoms I had experienced in my own long-term illness that were similar–to find a way to relate to her experience. Yet, I realized over time, that while it’s okay to share those things sometimes, you risk minimizing your loved one’s own experiences. So, it’s important to decide whether or not it will be helpful for your loved one to hear it and to think about the words you use to share it, so that you don’t come across like you are dismissing what they feel. The pause also really helped me refrain from saying things that I didn’t know to be true (like, “It will be okay, you will be fine”) just to make it all better or to allay my own fears about the situation.
I tried to put myself in her shoes. (It didn’t work, our feet are NOT the same size anymore). But, I did put them on, figuratively. When she expressed a fear or worry, I tried not to make any assumptions about what she was feeling. Instead, I tried to ask her more about it. “Tell me more” “Why does that scare you?” “Is there something we can do about it?” And sometimes I just told her how sorry I was that she was feeling that way and that it must be really hard.
I also tried to share joy with her and laugh a little. I knew she needed hope. She begged for it, every time we talked. I could hear her desperation across the miles and it broke my heart. So, when it felt right, I would tell her something that had brought me joy or made me laugh. This is as important as listening, but I think there is an art to it. You want to truly hear what your loved one is going through and give it the space it needs and you also want to occupy a little space of light with your loved one–pull them into it if you need to (just don’t drag them, that won’t go very well, I don’t think). Amy was remarkably good at finding things to laugh at and sharing them, so we’d laugh together about the weird and wacky parts of her experience. And at those moments, I would reflect back to her that it was a great sign of inner strength to find the humor. Those little reminders go a long way. You have to hold the hope for them, even when they can’t.
I wanted to do so much more for Amy and Cory, and I definitely spent time beating myself up because I couldn’t do more (we Italian empaths are good at that). Anyway, one of the many things that Amy and I have bonded over is gardening. I can’t tell you how many hours we’ve spent just talking about flowers and plants and how to grow them. When she was sick, she frequently lamented the fact that she couldn’t even get into her garden to weed and get it ready for summer. I think it also layered on her sense of overwhelm from just trying to keep up with daily tasks. My husband and I decided that we would plan a day to go into town and help her and Cory with weeding and some irrigation, so their yard could stay beautiful and they wouldn’t have another worry or reminder of the things they couldn’t get to. Instead, they could admire beautiful flowers and it would hopefully give them some respite, however small. It was a beautiful day and it felt so good to be able to show them our love and support that way. I had no idea that it would have such a lasting effect on them. Amy still talks about how much that meant to her. And I am so glad I will get to see her working the garden herself again.
TAKEAWAY: If we slow down and think about how we communicate with our loved one, we cultivate presence and empathy for them and ourselves.
Gently, consistently hold trust and believe in your loved one’s recovery.
It can be hard to understand what your strong hauler is experiencing. None of us have all the answers, but the point is to try and to use the tools we have.
Here is what Amy’s friend Amy G. did:
“I’ve known my strong hauler since we were young, and I’ve watched her go through so many life altering events, and even health events. I’ve always known her to learn and research her way through, and back to health. At first, I just knew she’d be better soon.
I just tried to listen. I knew we were all going through our own special kind of hell with regards to COVID and we were all, all 7 billion of us, learning to deal with it in our own way and our own time. It took me quite a while to understand that what Amy was experiencing was not a “normal” covid recovery and that she was experiencing something much bigger and more scary. It was alarming when she would call me distraught, in tears, and inconsolable. I wasn’t sure how to react or be supportive, so I just tried to listen.
And I tried to be as light-hearted as I could be. I reminded her to trust her body. This might be a stretch for your strong hauler, but Trust and Believing are big parts of recovering from anything.
I committed to sending little bits of love to Amy, whether it was a funny GIF via text, or a small present, and I tried to be consistent.
One thing that helped me to understand the psychosis part of this terrible disease (that some experience), was doing my own reading. Committing to understanding the disease (as much as is / was known) seemed to help me be supportive in a way that didn’t ask too many questions of her already tired and taxed brain. Doing the “understanding” part of the disease was my job, I felt, and I think you should try too. Take the time to understand what is going on with Long Haul Covid. Dig deep for the information because it’s not readily available. Try to learn of the (VAST number of) symptoms so that you can remind your strong hauler that it’s covid, and NOT them or their body that is malfunctioning. It’s covid- doing covid. It’s not them, and it won’t last forever…. Probably the biggest worry for a strong hauler is that it IS going to last forever, so you have to remind them that it isn’t likely.
This is a touchy-feely approach, but you could try a short meditation with them (or do one of Amy’s meditations or her laughing video together). Practice “feeling” what it felt like when you two last had a good laugh together or a fun time. Revisit, Reminisce, and Remind them of the occasion, the environment, the tastes, the smells, and ask them to “feel” those things in that moment. This is in order to remind their wracked nervous system of what “good” feels like. By remembering “good” it will help the nervous system reprogram.
If you live nearby, you can clean for them, or do laundry, or shop, or cook. One of the hardest moments for me was understanding how helpless my strong hauler felt that she wasn’t able to keep up with daily tasks of life because she was so exhausted. Her house was dirty and she felt ashamed. Do whatever you can to help remove some of the shame of complete health failure and exhaustion. Help them by removing some of the obvious visual reminders like a pile of dirty laundry.