This advice is written with love for people facing a nightmare. This is not a condemnation of the doctors and nurses and aides who are doing their best in an impossible situation — this entire situation is a condemnation of policymakers who know exactly how to stop the spread and are not.
If you came here for this advice, it means you’re likely in the midst of a horrific experience, and I am so, so sorry. I’ve been there, and I’m rooting for you. A member of my immediate family contracted covid through community spread early this spring while hospitalized. There were a number of times where the hospital was overrun, they were intubated, and we were told to say goodbye.* This is what I wish I had known then.
- If they have food allergies, mention it gently on every update call. When the hospitals are overrun, they may switch to standard box meals and in the chaos they may be served something they’re not able to eat.
- Ship them *very* easy to open snacks in the mail. It takes a long time for the staff to suit up to go in/out of their room and they may be rationing PPE, so they do bundled visits. It sometimes means meals come very early or very late, and the snacks can help them make it between meals. The snacks should be easy to open because they will be very weak. Even apple sauce cups could be too difficult. Try apple sauce/peanut butter/etc in pouches.
- If they’re intubated (have a tube in their throat to take over their breathing) ask what time the breathing tests are. This is when they’ll test to see if they’re able to take the tube out. It’s best to call and check on them after the daily test because you are likely to only get one call a day, if that.
- When staffing gets bad, the staff may not be able to help with personal care items. For example, trimming nails. If you can, ship accessible nail clippers (or whatever care tool they might need) and hope they’re strong enough to do it on their own. Long nails can become an issue when dialing a phone with extreme weakness, but there are great designs of clippers out there to help.
- If you call to get an update and they tell you they only have capacity for end-of-life calls, (really any time, but especially then) if you can, tell them you understand, are grateful that it’s not an “end of life” day for your loved one, and order them pizza. If they’re too busy to update terrified families, I guarantee that they’re skipping taking care of themselves. The pizza will refuel the hospital staff when they need it most and give your loved one — and everyone else on the floor — a better shot. Or at least it lets you feel like you can do something to help.
- If you have to arrange for an end-of-life video chat, they may give you a window of time. The staff at the hospital I was dealing with was very kind about letting me split it into 10 minute chunks so that multiple groups could say goodbye. If they have one line/videochat, just ask people to join at their appointed time.
- Open a notes file on your phone and note the date, who you’re speaking with, and anything they say. You think you’ll remember at the time, but it’s very difficult when you’re under extreme stress and having very similar calls every day. This will help you reconstruct things. Make sure to ask their oxygen levels and creatinine (kidney number). This will help you track which way things are going.
- If they are intubated, it can be excruciating to not be able to visit or talk to them and comfort them. They’re sedated for the tube, so they will only have a fuzzy awareness of what’s going on. If the staff aren’t too busy, some are willing to hold a phone up for you to sing a special song or even just say “I love you.” The nurses have told me that they can see them relax or open their eyes when they hear a familiar voice talking in a soothing way.
- Look up any news clips about the nurses organizing for better working conditions at the hospital, and do whatever you can to support them (money, time, attention). All of the staff working to save your loved one are precious, but nurses are made of gold, and we should do everything they say. Solidarity forever.
- Keep hope. Many hospitals play “Here comes the sun” over the intercom when a covid patient leaves the hospital. I recommend adding it to your playlists and know somewhere in the country, that song is playing and hopefully someday soon, it will be for your loved one.
A note on rage
People you love — your family and friends — will host destination weddings with no masks while this is happening. They’ll go to bars and they’ll throw huge parties, and they’ll post it on Instagram. They will know that if the ICU gets too busy, no one will be able to hold a phone up so your loved one can hear a single familiar voice in their wretched — possibly last — day. They’ll do it anyways. For me, this feeling of betrayal is almost as painful as the “goodbye” conversation.
I highly recommend seeking therapy if that’s an option for you, because at least for me, the cruelty in those actions came close to fundamentally changing the way I see other humans. I also recommend writing paper letters (that you don’t intend to send) to the people you find yourself most angry with. As my therapist says, the only way over your feelings is through them.
Another option I strongly recommend is submitting a scheduling request with the office of your governor/mayor/whatever. Ask for a 30 minute meeting about Covid, and share what you’re going through. The meeting might end up being with a staffer, but the contents actually might get to the people who are responsible for what’s happening. (SHOUT OUT TO MARK IN GOVERNOR DEWINE’S SCHEDULING OFFICE!!!)
Thank you to Kathy, Rebecca and Alicia for your help publishing this.
*Edited to remove the note that he’s still alive. He passed in a nursing home of covid-19 complications. https://www.newcomercolumbus.com/Obituary/192728/Tom-Meyer/Columbus-OH
