The month of May: my COVID-19 story

Posted on Facebook, May 1, 2020:

Where to start???

I spent the last part of February and much of March obsessively watching the numbers of positive Covid-19 cases go up, and the number of affected states and counties gradually increasing as well. Once it was clear that community spread had begun, I remember thinking that my brother was sure to get it.

This week, my brother did test positive for Covid-19.

My brother is in Massachusetts. He has a number of serious illnesses, and he’s been in and out of the hospital more frequently in the last couple of years. It wasn’t symptoms of the virus that brought him to the hospital, but one of his other conditions. So far, he’s doing fairly well: he’s being treated for his existing illness and is much improved over when he was admitted on Monday, and his Covid-19 symptoms are mild so far. I talked last night to a nurse who said he’d gotten two units of plasma, since the hospital is part of a trial for that treatment. Unfortunately, I haven’t actually spoken to my brother yet. I hope to rectify that tomorrow, as the weekend frees up my schedule. (That sounds idiotic, since I’ve been working from home, but in a weird way, I feel like I need to be “on task” even more when working from home than I do at the office.)

My brother and I really haven’t been close for a long time. But we’re getting older, our parents are dead, and he’s still my brother. In addition to all his “regular” illnesses, now he’s got Covid-19. And I’m over 1000 miles away and can’t do anything to help him.

Posted on Facebook, May 13, 2020:

An update on my brother:

Lee was discharged from the hospital back to the nursing facility last Wednesday, May 6. Yesterday, I got a call from his friend (who is also his health care proxy, because he lived in the same building and I’m halfway across the country), and he told me that Lee was being placed on hospice care.

Yes, hospice.
The too-long, didn’t-read version: I was told today that “his condition is poor” and he’s receiving end-of-life care. It seems certain that it’s not the coronavirus that’s killing him, but one of his prior conditions.
If I go to Mass. to try to see him before he passes (I *would* be allowed a 30-minute visit), and/or to take care of any arrangements before/after he passes, I would need to self-quarantine in Mass. for 14 days.
Should I go to Mass.? Or should I not? But if I don’t go, who will take care of arrangements, stuff at his rooming house, his bank account, whatever else comes up that I can’t think of right now…?
What kind of sister would I be if I don’t go???

More details and red tape below:

I got a phone number, and got transferred to like four different people, and finally talked to a woman who said she couldn’t tell me anything because I wasn’t listed as an approved contact person, HIPAA, etc.
I asked, “Do you have the name of his contact right in front of you?”
“I can’t give that to you,” she said.
(Note, that’s not what I asked her.)
I said, “If I just guess who it is, do you have the name there?” And I didn’t wait for her to answer, I just gave her the name.
She said, “That’s correct.”
So if I wanted information, I had to call my brother’s friend…the one who had called me to give me the number for the hospice service. Grrrrr.

Last night, I talked to a nurse at the facility, who was kind enough to tell me that yes, Lee was switched to hospice care yesterday. She said if I wanted to get added to the official list of people who can get info about my brother, I should call back during business hours today and talk to the social worker.

Finally got a call back from the social worker today, who is the person who told me that “his condition is poor.” She said that I’m not listed as an alternate on Lee’s health care proxy, I’m only listed as a contact person/family member in his record. She did say she would add me as allowed-to-hear-info-about-the-patient for both the facility and the hospice nurse(s), so hopefully, when I call, I can actually find out his status.

The social worker is the one who impressed upon me that I would need to stay in Mass for 14 days after visiting Lee and after being in a Covid facility, going so far as to tell me that if I got on a plane, I could be putting the other fliers at risk. I realize that she didn’t know she was talking to someone who’s had only a few non-family outings in the last eight weeks: two trips to the post office and one to a grocery store.

She wasn’t able to tell me how long it might be before the end; I believe she said, “It could be two weeks, it could be two days, we just don’t know.”

I was also told that Lee’s friend/proxy did visit him today (30 minutes or less). I called him a little while ago to ask his assessment of how dire the situation is, as someone who has known Lee for over 10 years and saw him basically every day until the last couple months. I’m waiting for him to get back to me.

If we weren’t in the midst of a pandemic, I would already be trying to book a flight and get back to Mass as quickly as I could. But we ARE in this ongoing crisis, so I don’t know if I should try to make this trip or not. And beyond all the logistical and financial and quarantine-related issues involved in such a trip (like I thought maybe I could take a bus, which would take over 24 hours BUT I think I’d interact with fewer people than if I went with air travel–and where would I be able to self-quarantine in Mass without spending an exorbitant amount of money?)…beyond all that is, WHAT IF I END UP GETTING SICK?!? Then I’d be in Mass, and my husband and sons would be here in Kansas, missing me and afraid for me, and I’d be sick with Covid-19.

But he’s my brother. I wasn’t there when my dad died (which was sudden), and I wasn’t there when my mom died (which we did have time to prepare for), and I feel like if I don’t try to see my brother before he dies–even if he’s unresponsive and has no idea that I was there–I’ll probably regret it.

Posted on Facebook, May 14, 2020, at 6:49am:

Short update: I just got a call from a nurse at the nursing home.
“Lee went to heaven this morning.”

We talked for a few minutes and she tried to answer the questions I tried to formulate (on not much sleep). She believes Covid-19 did play a role in his decline, and mentioned blood clots: “The reason I sent him to the hospital was because he was coughing up blood.”

She said she would have hospice call me. I need to figure out what needs to be done, and hopefully have my questions ready before the call. I don’t yet believe that he’s gone.

I did talk to Lee that Sunday he was in the hospital. As we talked about the virus, one thing he said to me:
“I’ll try not to die on ya.”

I wish I had known how sick he really was. I probably *should* have known. Dammit.

Posted on Facebook, May 30, 2020:

I guess it’s official. This cropped picture isn’t from the death certificate, but from another document I just received a copy of from Boston Cremation. My brother had some serious health problems, but his immediate cause of death WAS Covid-19.

I’m sure most of my friends & family are already taking this seriously and trying to stay safe. Please keep taking care of yourselves!

One more photo for the road: Lee and I are at a local carnival, sitting in a kid-size car, and I clearly have the wild grin because I’m posing for the parent or grandparent taking the picture as we spin by, while Lee appears to be saying something to me and of course I’m listening to him while hamming it up for the camera. This is July 1977; Lee was eight years old, and I was almost six. A lot of my childhood was like this: every time I looked around, I’d see Lee. It’s been seven weeks, but sometimes I still don’t believe he’s actually gone.