A caregiver for her terminally ill friend contracted COVID. Not only did it make dying — and grieving — more difficult, but it also unveiled the shortcomings of the U.S. health care system.
[Editor’s note: Mel Umbarger, who is a Senior Communications Specialist with the Budget & Tax Center, a project of the NC Justice Center, drove to Florida during COVID-19 to take care of her best friend as she was dying of a genetic disease. She had been quarantined since March, so she felt safe. Then one night, a home health aide showed up with a cough.]
My best friend didn’t die of COVID-19. But COVID-19 would make a huge difference in the way she died.
Colleen would have turned 40 on Sept. 28, but she died more than a month short of that. At 3:23 p.m. on Aug. 19, she passed away at home as I was holding her hand. Despite her many family members and friends, the only other ones there were the hospice doctor and her two cats.
Despite all our precautions since mid-March, we had both been exposed to COVID-19 while quarantining together at her home while she was in hospice care. I tested positive, she tested negative, but we both got the symptoms.
A lifelong friendship
We met nearly 30 years ago when we were in the sixth grade in Daytona Beach, Fla. We bonded over our love of books and grammar, Guns N’ Roses, and our shared worry that people would stare at the teeth marks in our sandwiches.
I don’t remember everything we talked about on the phone after school, but we stayed connected for hours at a time. And we’d go on to stay connected for the next 29 years — through the years I spent at Winthrop University in Rock Hill, S.C., a and she spent at California State University, Fullerton; then getting married, and then moving on with life in states far apart. I ended up in North Carolina, she in New England. Neither of us had blood sisters, but we had found a sister in each other.
When she was 27, she told me that she had been diagnosed with Ehlers-Danlos Syndrome, she was getting divorced, and she was moving back to Florida.
EDS is a genetic disease that affects connective tissue in the body — which pretty much everything in the body is made of, including skin, organs, veins and more. There are several types of it, and she had one of the more severe. I’ve heard the analogy of a house made of faulty materials — it still looks like a house, but because all the materials are poor, issues can pop up anywhere. It’s the same with the body of someone with EDS. For her kind — vascular EDS — the median life expectancy is about 50 years old.
Suddenly, a lot of things made sense. She was the kid who could bend her thumb nearly all the way back, and she had always had a sensitive stomach. Her joints had gotten more painful over the years, and she could pop a shoulder out of its socket just rolling over in bed.
Her disease had progressed enough by the time it was diagnosed that she took a medical leave from her Ph.D. program at Brown University, hoping to return someday. She moved to Florida and lived on her savings for some time, with support from her family and friends, while she waded through the bureaucracy of Medicaid and the Florida disability program. Her divorce meant that she lost access to health care insurance.
She would deal with the painful and increasing consequences of her disease without access to affordable health care, getting by on sliding scale health clinics and Planned Parenthood for what little care she could get, until the state of Florida decided she was actually disabled enough at the age of 34 to warrant helping her. Even then, very few offices in her county had openings for new Medicaid patients, and no one knew how to handle her disease.
Needless to say, the lack of access to health care turned a disease that could have been managed into 50 or more years of a decent life into something that broke down her body much more quickly.
Being sick during COVID-19
On May 8, 2020, she ended up going into the hospital in Daytona for ongoing stomach problems and flu symptoms. She couldn’t keep anything down, her bowels weren’t working right, and she was in serious pain. Other symptoms led her to worry she had COVID-19, but a test revealed she had the flu instead.
According to the Florida Department of Health, on May 8, there were 39,199 cases and 1,669 deaths due to COVID-19 in Florida. The headline that day was that Florida Gov. DeSantis announced that barbershops and salons could reopen.
The hospital was clearly struggling to maintain COVID-19 guidelines at this point. It took some time for them to even find her a bed. She posted this on May 12 on Facebook:
“I’ve been exposed to healthcare workers coughing and wiping their faces because they can’t breathe through a mask and don’t have gloves on, and they took my test sample Thursday and put it into the rapid return system since you have to know if someone inpatient has it or not ASAP, but it’s now Tuesday and I don’t have results back because this is a political nightmare
… and they keep adding signs to my door about isolation and droplet risk and the need to suit up, but not actually following those regulations, and I don’t know what some of these people are sick with, they may well have been tested for Covid and diagnosed with random ass bronchitis but pressured to go to work anyway because there are shortages all over, but I don’t fucking know.”
On top of the chaos, the doctors at the hospital had no clue how to handle someone with her complex disease — one where sutures don’t always hold on skin that tears easily, where organs aren’t always in the right place, where the patient doesn’t look sick so it’s easy to assume she isn’t as bad as she’s telling you. She wasn’t getting the nutrition she needed because she couldn’t hold anything down and her gastroparesis (stomach paralysis) was flaring, and we could see her face getting thinner in the photos she posted and the FaceTime calls.
By June 1, when she was moved to an Orlando hospital with better facilities, she was in bad shape. The feeding tube they tried twice to put in her stomach wasn’t working, and she was in more and more pain.
On June 1, the headline in the Orlando Sentinel read, “Florida adds 667 coronavirus cases for a total of 56,830; death toll at 2,460.”
It took them time to find her a hospital bed in Orlando; she ended up in a room the size of a closet with a faulty hospital bed and no air conditioning. There was nowhere else for her to go because of how COVID-19 was affecting everything. I asked if I could drive from my home in Greensboro to visit her, and she told me that they were only allowing one family member a day to visit because of the pandemic.
Sisters of the heart didn’t count.
Over the next month, it was a roller coaster of symptoms and complications, and the maelstrom of a pandemic in a major hospital meant that her nurses were overworked, things fell through the cracks, and she wasn’t getting the care she really needed. Still, they decided to discharge her with a plan for home health care on July 1.
It didn’t go well. The promised support didn’t materialize, and she was miserable and in pain. I texted her when it became clear she wasn’t going back to the hospital immediately. “Are you staying at home? If so, I will come down and stay with you. I can bring an air mattress and sleep wherever.” She called me back immediately and said yes.
I had been quarantining since March with my husband, so I knew I was safe to be around her. On July 5, I told her that I had made arrangements and would be down two days later. I had been working from home since March, so I could continue to do my job from Florida. She started talking about hospice at this point to me and some other friends, but was worried everyone would fault her for giving up.
“I love you,” I told her. “I’ll never fault you for any decision you make.”
The machines keeping her alive at home started to fail, and she wasn’t staying hydrated enough. By July 7, she returned to the hospital in Orlando, and she told me to hold off on driving down. She posted this:
“I will say, however, because I was assuming to not be able to speak or hear when I was brought here, I’m not sure why, my gurney was inadvertently placed in a staff- only section where physicians were meeting and quite upset, because there are no intensive care beds left, and the emergency department has no ability anymore to really place people on holding, and have no idea what to do with people who need intensive care, or I think really even critical care at this point, because the hospitals just at capacity.”
On July 7, the Florida Dept of Health announced a total of 213,794 Florida cases, with 3,841 deaths related to COVID-19.
On July 12, her doctors were still pushing an experimental procedure on her that would only have a possibility of relieving one of her symptoms. She told them she wasn’t interested and wanted to talk about hospice. The doctors and nurses pushed back on her — she was too young to give up, one nurse told her. “It wasn’t in God’s plan,” and she somehow forgot to bring the Do Not Resuscitate form Colleen requested.
Colleen posted to her friends: “I am behind that point. Please don’t push it. My spirit can’t take any more pressure, even from well-intended people who think I should try absolutely everything. At this point, even if it did buy me more time, that time would necessarily be worse quality than now, and now is almost wholly unmitigated torture.”
She kept pushing them to get her a hospice or palliative consult. “I just hope we can get hospice moving, because I’m hitting such bad pain spirals that they thought I may have been, like, having a severe med reaction and/or dying,” she wrote. “It honestly could have been a brush with the latter. And now I’m just in agonizing discomfort almost all the time. I won’t get better, but at least get me comfortable. Please.”
Days later, she was increasingly desperate to hurry the hospital along — all she wanted was to get home to her cats, her family and her friends so she could let things happen and try to be more comfortable.
She was still in the hospital when I headed down on July 17. At this point, patients could have one visitor a day because of the pandemic, so we had to text with her mom and dad to determine which days I could visit her.
On the days I went, they couldn’t.
Visiting her meant lining up each day at the hospital check-in area to get my temperature taken, answer the COVID-19 exposure questions, and be issued a disposable mask to be worn constantly. I was really uncomfortable with the number of people I passed on the way into the hospital who weren’t covered up.
It took several more days, an argument with her doctor who walked out on me, and setting up the hospice consults ourselves to get things done, and on July 22, she was able to go home under hospice care.
There were some bumps in the road in getting her pain managed and her other medicines set up, but hospice had told us she was a complex case. Her doctors and nurses did what they could to deal with complications they didn’t usually see. We had constant support — 24-hour care for the first week from hospice, daily visits from her mom to relieve me for a couple hours a day, and overwhelming generosity from our friends and family.
Several Amazon packages arrived daily with things to make her more comfortable. (“Seasons of Love” never talked about measuring your life in Amazon boxes,” she told me.)
My mom dropped off homemade comfort foods on the doorstep for dinner, because I couldn’t break quarantine to see her. Colleen’s dad had been traveling recently, and he was waiting out the two-week quarantine before he could see her in person. Everyone who came into the house wore a mask, and so did we.
Then hospice transitioned her from 24-hour care to a nurse checking in on her daily. Colleen’s mom made arrangements with a home health agency to send someone at night to take care of her so she and I could both get sleep. And everything was fine, until we got a call on Aug. 3.
From best friend to caregiver
I’m not going to say that being Colleen’s primary hospice caregiver was fun, but we got to spend more time together than we had in years. We talked for hours, sitting up as long as she could, usually late at night after her pain meds kicked in a bit. We reminisced about our younger years, we laughed and ate ice cream and watched bad reality TV together.
They had converted her feeding tube to just a drainage tube, so she could eat and drink for comfort, and it would all just immediately drain into a bag. She took advantage of that, eating all the sweets she wanted. I stocked the fridge with salted caramel and Bananas Foster cashew-milk ice cream, key lime pie and mango key lime pie from Publix, and toaster strudels. And sweet tea, of course.
We talked about her wishes, and I kept notes on what she wanted to happen and not happen. We wrote her will. We arranged to donate her body to science. And we talked about her decision and her fears. And every time I walked out of the room, we said “I love you.”
It was scary for me, and I often felt like I was in over my head. One night her pain pump cartridge ran out at 3 a.m., and the pharmacy wasn’t open until 7. It was a bad night, and I had to keep explaining to people over the phone why I couldn’t just give her liquid morphine as it would drain right back out again. We put a plan in place to make sure it didn’t happen again.
We tried to get her a medical marijuana card to help with the pain, but that was another aspect of her care that the pandemic thwarted. She had to be seen in person for the first visit, and they were not doing house calls due to the pandemic. I called the The Florida Department of Health Office of Medical Marijuana Use and asked them what we were supposed to do, but they didn’t have a good answer. Nobody does right now.
Her main nurse trained me on hanging her TPN (total parenteral nutrition) bag, mixing and injecting vitamins into the TPN solutions, changing the pain pump cartridge, replacing IV tubing, priming the tubing, and all kinds of other medical tasks that scared me. Colleen assured me I couldn’t mess it up, and even so, she was willing to chance it because it meant she got to stay home.
On Aug. 2, one of the lumens on Colleen’s PICC line became occluded. A PICC line is a long tube they insert directly into a vein, and each lumen has an opening that you can give medications through. One of her lumens was being used for her pain pump, and one was being used for her TPN, or nutrition. It happened overnight on a weekend, and by the time a nurse got there to fix it, there was nothing they could do.
They offered to take Colleen back to the ER to have another line placed, but she said no. Actually, she said, “I’d rather die than go back to Halifax hospital,” and we both started laughing through the tears. We laughed even harder when the nurse repeated her words in a deadpan tone to the doctor on the phone. Dark humor had always bonded us together, even at this moment.
Colleen had to quickly decide on how to use the remaining lumen — pain pump or nutrition. It was easy for her. She chose to stop her nutrition, and they upped the pain medication to make the coming days easier.
The next call: A COVID-19 diagnosis
On Aug. 3, Florida had 491,884 total cases of COVID-19, 7,157 deaths, and 27,366 hospitalizations.
The previous Thursday night, a home health worker showed up with a cough to care for Colleen. I asked her if it was COVID-19, and she assured me it wasn’t. Still, at 1 a.m., her cough was keeping Colleen awake, so we asked her to leave.
I’m not mad at the health-care worker, though. I saw her face when I asked her if she would be paid for the rest of her shift and she told me no. I handed her some cash on the way out, because I’m not going to be the reason someone can’t put food on the table that week. I am angry, however, at a system that allows a health-care worker to be paid $8 an hour and have no sick time, ensuring that she comes to work sick to be able to pay her bills.
A few days later, we got a call from Colleen’s mom: The home health aide had tested positive for COVID-19.
The immediate consequences were that Colleen’s parents couldn’t visit until we were both cleared. If one of us tested positive, they’d have to wait two weeks to see her — and because she had just lost access to nutrition, she likely didn’t have two weeks to live.
Colleen was tested on Aug. 4 and was negative. I was tested on Aug. 5, and I was positive. I sat in the parking lot of the urgent care and sobbed to my husband on the phone. My immediate thought was that I was going to have to leave my best friend to die alone. My second thought was that I had nowhere to go to quarantine because I couldn’t expose my husband or mom.
After I calmed down, I called Colleen. We cried together some, then talked. Her voice was tired when she said, “Just come home. It’s not like I can die twice. We’ll get through this together.”
Before I headed to her home, I talked to her dad. He was just coming off of his quarantine, not that it mattered at that point, and I wanted him to be able to see her at least once before the end. We arranged it so she could sit in her wheelchair on her front step, and he stayed 6 feet away while they visited for a couple hours. Her mom was unable to visit again in person because her husband was immunocompromised.
Now we were just hoping I didn’t get symptoms so I could keep taking care of her.
When hospice found out, all nursing switched to FaceTime visits. Unfortunately, the wonderful nurse who had come over that weekend to help with Colleen’s PICC line had to be quarantined for 14 days, as did her hospice case manager nurse. Colleen was not their only patient.
It also meant that the planned visits with some of her friends to say goodbye couldn’t happen.
Colleen was livid, as she posted in an update to family and friends. “I am exhausted and quiet but mad as hell,” she wrote. “Fucking Covid, in my house while my dear friend and unexposed caregiver are just trying to let me die … safely in the comfort or my my own home, in the middle of a fucking pandemic.”
‘I got sicker, so did she’
On Aug. 6, I started showing symptoms. It became exhausting just to walk from one room to another. I started planning my trips carefully to take care of Colleen, so I could accomplish as much as possible in one trip. I had to rest in each room before moving again.
Despite her negative test, Colleen started having some possible symptoms. Her nurse was pretty sure they did the test too early.
Over the next few days, I developed a cough, and I ordered an oxygen monitor for my finger. I got night sweats, and I added achiness and headaches to the list. I also started forgetting things very easily, and I was unsure whether to attribute it to COVID-19 or exhaustion.
As I got sicker, so did she.
Her PICC line failed completely, and hospice scrambled to find a new way to get pain medications into her. They ended up sending a nurse in complete PPE to install an IV subcutaneously, much in the way people with diabetes receive insulin, and I watched so I could do it if I needed to. As we talked with him, we found out we had a North Carolina connection — he grew up in Welcome, N.C., and Colleen had spent her younger years in Durham.
She also developed more COVID-19 symptoms, including a deep cough that caused her pain. The new line seemed to do its job, though, and the pain got a bit better.
As we both struggled, our community stepped up to help. My mom continued to leave food on the doorstep. Our friends continued to send helpful things through the mail, notes of love, and flowers. My co-workers raised more than $600 for gift cards for prepared food and groceries for us. I burned through my remaining paid time off and two weeks of COVID-19 leave, so my co-workers donated their leave as well. I have never been more thankful — and aware of my privilege — to be a part of a union and work at an organization where I have paid benefits and amazing co-workers.
We spent the next few days sleeping to the sound of Florida thunderstorms. I started getting better, and she continued to decline.
On Aug. 13, there were two milestones. I took my first shower in more than a week, which left me exhausted. And the doctor started her on phenobarbital every few hours. When I relayed that to her, she looked surprised. “That’s a big girl drug.”
According to the Florida Dept of Health, as of Aug. 13, there were a total of 563,285 Florida cases with 9,141 deaths related to COVID-19.
The phenobarbital worked to sedate her, which is what she wanted as the lack of nutrition took its toll. About 24 hours into taking it, she was barely waking up when I administered it. In one moment, she murmured to me that she liked this pain medication because it let her sleep.
On Aug. 15, she stopped recognizing me when she woke up. She kept asking me where Mel was, and got agitated when I told her I was Mel. I finally told her Mel would be there in the morning, and she smiled and went back to sleep.
Over the next couple of days, she stopped waking up. I whispered the love and support from her friends and family to her, and her sweet cat Chucks stayed curled on her bed constantly. Her other two cats came to visit, too. I ran her hands over their fur, hoping she would know they were there.
On Aug. 18, I tested negative for COVID-19, though my symptoms weren’t gone yet. The doctor came by to check on her, and he told me it would likely be less than 48 hours. Now that I was negative, her mom could come by to see her. She sat with her and said goodbye while I ran an errand.
The next day, the doctor stopped in again. After checking her vitals, he said he thought it would be at least another 24 hours. We stood there in her room and talked a little bit more, and he looked over at her. “It’s happening now.” She has always been precocious, and she would have been thrilled to stay on brand even in her death.
He left the room, and I texted her dad to hurry for his planned afternoon visit. Then I held her hand and said goodbye.
As of Aug. 19, Florida had 584,047 cases of COVID-19. It passed 10,000 deaths due to COVID-19, but Colleen was not one of them.
COVID-19 struggles, even after death
Even after her death, COVID-19 continued to affect her. I was unable to carry out her wishes in some cases because of how businesses and organizations have shut down. The domestic violence shelter she asked me to donate many of her things to was not taking physical donations due to the pandemic.
Her funeral service was supposed to be streamed online, but technical problems meant no one got to see it. Her friends and family have grieved apart.
I continue to recover from COVID-19. I am probably 90% back to normal. I can make it through most work days now, although I still had to tap out early for a nap one day last week. Most of the remaining 10% are my words, though. I am still struggling mightily to find words that are on the tip of my tongue, and the ones that come out are wrong more than I like. “Misaligned” for “maligned” last night. Not remembering names of people and places that I can see clearly in my mind. I make my living on my words, and it’s really disconcerting to not have them at hand.
It has taken me longer to go through her things, to dispense with them in ways that are as close as possible to her wishes, because I have had to rest often. And to take some time to stop and deal with my own grief.
As I write this, I just finished emptying Colleen’s bookcases. It’s one of the things I left til last because I knew it would be one of the hardest. Tucked into many of her books, I found notes and recipes in her handwriting, pressed flower petals, receipts, and the detritus of life that we bookworms often turn into bookmarks.
It felt like she was disappearing, piece by piece, as I emptied her house. But I know she won’t ever be completely gone — she has too many friends and family members who will remember the kind, brilliant, and compassionate woman who so loved her cats and her family, both chosen and blood.
I just hope that her story can inspire others to wear their masks and take this seriously. Just one person with COVID-19 can affect so many lives in an ever-widening ripple effect.
What you can do
- Contact your lawmakers and tell them to expand Medicaid. Or disability rights. Or anything that may keep your best friend alive in the future. www.NCjustice.org/take-action
- For more information about hospice in your area: http://www.nationalhospicelocator.com/
- Many universities and research centers in North Carolina participate in donation programs. Organ donors cannot donate their bodies to science. https://coa.dph.ncdhhs.gov/donate.htm
Email Mel Umbarger at [email protected]