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Amid the COVID-19 pandemic, a different kind of grief and loss

Courtesy Michelle Matiyow

More than 13,000.

That is the tally of lives COVID-19 has taken here in Michigan as of Sunday.

We don’t talk as much about the other people we’ve lost over the past ten months.

Michelle Matiyow’s stepdad, Rich Herrmann, is one of those people. He died of cancer in July. By then Matiyow’s mom, Diane Herrmann, had been sick for a few months. She got a cough in March that wouldn’t go away. She got tested for COVID-19, and the result was negative. That was a relief to Michelle. But because of the pandemic, it took months for Diane to see a doctor in person, and instead doctors prescribed her steroids, over the phone. 

In late summer, Diane’s health got worse. Here is Michelle’s account of that time. It’s been edited for length and clarity.

My name is Michelle Matiyow. I'm a photographer. My mom was Diane Herrmann. She was an elementary school teacher. She was absolutely one of the kindest, warmest, smartest, most rational people I've ever met. 

Things got really bad around Christmastime last year [2019], and we knew we were getting near the end. [My stepfather Rich’s] cancer had metastasized into his bones. There's no coming back from that. 

My mom wasn't feeling well. They were completely isolating due to COVID because Rich had no immunities because of all his medications and immunotherapy and his cancer. So we would go see them and sit on their back deck and they would crack the window and talk to us through the screen. And my mom started to cough around March and it got really scary. It just kept lasting. Getting worse around Mother's Day, her cough was really bad. 

She finally called the doctor and they had her get a drive-through COVID test. Nobody saw her in person. And we really did think she had COVID. Her symptoms completely mimicked it, the cough, the brain fog, the exhaustion.

Credit Courtesy Michelle Matiyow
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Courtesy Michelle Matiyow
Diane Herrmann, left, and one of her students.

But her tests came back negative. And we really thought we dodged a bullet. And they thought that it was just a combination of bronchitis and exhaustion from the stress of her husband who was dying.

They give you steroids for bronchitis to treat bronchitis. And that kind of alleviated her cough and gave her this weird energy. And they kept giving her that. And it was a mask. It was a Band-Aid, and it got her through the next couple months.

My stepfather passed at the end of July and we did not know that my mom was sick at that point. Really sick. 

She got through the rest of July and August on those medications. And then her doctor, who at this point had still not seen her in person, I believe, told her that he could not prescribe any more of the steroids. She had to take a break from it because the steroids are an intense medication. And that's when she really, truly started to feel her illness. 

She was alone, I mean, really alone in such an intense way, more so than she even expected to be after he passed because of this pandemic. And she was scared and she wasn't feeling well. And so we texted a lot.

In early September she texted me and said, “I think something's really wrong, I really am not feeling well and I really think I'm going to have to tell my doctor that I need to be seen.” But she wasn't seen until one day she felt so ill, she once again thought she had COVID and she took herself to the ER, and they admitted her and they finally did a chest X-ray and they found a very large mass on her lung. 

I wish they'd biopsied it that day. I don't understand why they didn't. 

I believe it took almost a month to get the first biopsy.

At that point, every day when I called her, I asked her how she felt. She said she felt worse than the day before. There was never a single day where she would say, I feel a little better than yesterday.

That's when it got really scary. 

She fell several times. The worst one was she was using the bathroom in the middle of the night around midnight, she crawled to her phone in the living room and it took her three hours. She passed out several times. When she finally got to her phone, she called 911 to come scoop her up.

When I got there, she was sitting on the couch. She was shaking like a leaf. She was drenched in sweat. She was crying. 

This is when everything kind of gets hazy. At some point in there, we got the biopsy results from the needle biopsy and it was inconclusive, and they didn't immediately schedule another one. It was another week or so and then they finally scheduled another one. She had to go to the hospital and they did a little surgical procedure where they dug in there and snipped some of the mass. And then they sent her home, and I couldn't believe that they sent her home. 

My mother always looked 10 to 15 years younger than she was, even when she was feeling terrible. She did not look like what one would think of as a 77-year-old woman. And I think it was actually a detriment because after multiple hospital visits and telemedicine visits and her saying in her own words how she felt and what was happening to her, nobody comprehended how ill she was. Nobody could understand. We could not make anyone understand.

Credit Courtesy Michelle Matiyow
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Courtesy Michelle Matiyow
Diane Herrmann holding daughter Michelle Matiyow.

She had another fall while a family member was there. She thought maybe she had cracked a rib or something. She was in pain and she wanted to go to the ER and I think she was just tired. And this is another area where the pandemic affected her, not just how limited care was and how long it took to get seen and X-rayed, but every time she went to the ER, it was a nightmare. She would spend days, multiple nights in the ER and you don't spend multiple nights in the ER. If you're admitted, you get admitted and you get a room. But there were no rooms. There were no beds. 

So that last stay in the hospital is when the results of her second biopsy came through and it was cancerous, her mass was cancerous. 

She was probably the least surprised because at that point, she knew that something was really wrong and she knew some of the signs, she knew her appetite had gone, and that's a sign of cancer.

She was very adamant as soon as she had some clarity that she did not want treatment because she had witnessed that through my stepfather, and at that point we thought it was still an option and the doctors thought it was still an option. We had not seen a doctor yet except the ER, the random ER doctors who had stopped in. She had not seen an oncologist. I don't... I don't believe she had even seen the specialists since they did the biopsy. 

I had a hard time getting a hold of her general practitioner. I had a hard time getting a hold of anyone. The people who showed me the most compassion during this time, who seemed the less hurried and the most available were the social workers that I spoke to. They were amazing and very helpful. 

Everything else is kind of a blur after that. 

An oncologist told us by phone that the only hope was to get her in a rehab facility, which is essentially a nursing home, to get her strength up so that she could withstand treatment because the catch-22 of cancer treatment is you have to be somewhat strong and healthy to endure it. 

She was isolated. We could only talk to her through an open window. And we were lucky that we had that because some of the facilities didn't even have the ability to do that. 

They were understaffed. A lot of people had quit, is my understanding. 

And so she had to beg for attention and services. And it got to the point where she would call me constantly throughout the day and night to ask me to call them, to ask for help.

It was the end of October, no, the first week in November, maybe, when we finally had an in-person appointment with the oncologist. I had a van come to the rehab facility and pick her up, and I drove with her in the van to her appointment.

We held hands at the appointment with the oncologist, [who] told her that a couple specialists had taken a look at her scans and determined that her tumor was necrotic, which means it was dying. And that's a bad thing. 

Tumors like that are non-responsive to treatment. And so there is no point to treatment. So that torturous two weeks that she spent in the rehab facility had just been wasted time that we could have had her home on hospice around loved ones. 

She really lost her mind in that facility. We didn't have her mentally too much longer after that. And that was definitely because of the pandemic, because she hadn't been seen. It took so long. Every single thing took so long and it was so hard to get anything done. 

I can't tell you if my mom would have survived her cancer, if there hadn't been a pandemic, but I can tell you that it absolutely would not have been as horrific for her as it was. It wouldn't have been as lonely and scary. We would have had more time to spend with her at home and to wrap our minds around it and make her comfortable.

 I managed to get her out of the rehab facility on a Monday, and she died on Sunday, so we only had her for about three solid days that she was talking to us and responding to us, that she could see that I decorated her house for Christmas and that my aunt had driven up from Florida to help take care of her. 

My story definitely veers away from the other people who are victims of this pandemic, because the stories that I'm reading of people dying alone in hospitals is a nightmare on another level. And I am very grateful for those days that I had with her. You know, I've been thinking a lot about all the people who have died this year, and it's not comforting, it's not comforting to know that my mother is a drop in the bucket of one of the worst years of fatalities in our country's history, that is not comforting. 

A couple people have said to me, you know, there's never a good time to lose a loved one. And it turns out there actually is a particularly bad time to lose a loved one. And it's during a pandemic. 

 

Sarah Hulett is Michigan Public's Director of Amplify & Longform, helping reporters to do their best work.
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