May 15, 2022

From Diane:

My mother passed away from COVID on May 15, 2020.  This is a tribute to her, and to the healing that has taken place in myself and perhaps others since that time.  I started this work on July 20, 2022 and finished it on February 12, 2023 - so about 7 months worth of work.  I didn’t track my hours, so no idea really how much time overall it took. 

I had/have a lot of guilt surrounding the pandemic in general.  My mom was one of those unfortunate souls who was in a nursing home at the time the pandemic hit.  She had early-onset Alzheimers and was declining rapidly with that disease long before COVID ultimately took her life.  Her nursing home was locked down in March of that year, and we were effectively cut off from her because she couldn’t talk on a phone and didn’t recognize our voices when we tried (she didn’t recognize us in person either, but at least we could hug and give her the comfort of physical touch).  I am a physician in administration at a hospital about 5 hours away from her, and as the pandemic kicked up, I was just consumed with work.  I felt both relief and guilt about no longer being at the bedside and directly in the line of fire like so many of my colleagues.  To try to temper this, I threw myself into work to help wherever I could; anything we could do with my teams to improve the recognition and treatment of COVID patients, we did.  We also worked tirelessly to find ways to protect our nurses, therapists, and doctors at the bedside - because I worked with the electronic health record, there was no shortage of ways to try to use technology and data to help our patients and community.  On the flip side, there was no real boundary between work and home; I worked all day and often all night to try to make a difference.  I thought my mom was in a safe place, and didn’t spend too much time worrying about her, until we started hearing about Nursing Home outbreaks and the vast number of these patients being impacted with little to no oversight.

In early May, we got the call from the Nursing Home that mom had tested positive for COVID.  We didn’t even know they were experiencing an outbreak - but she was stable, with a low grade fever, and they thought she would be okay.  No, we would not be allowed to visit.  On Mother’s Day, we got the call that she was having trouble breathing and that she was going to the hospital.  My sister was able to visit her for 10 minutes in full isolation gear while she was there, but that was the only visitation allowed. It required calls up through the ranks of administration to make that happen.  It breaks my heart to think that she was likely terrified by all of the gear and not at all understanding of what was happening around her; I hope something in her recognized who my sister was and that she was able to gain some comfort from that.  Ultimately, she was sent back to the Nursing Home on Hospice Care, because she was so decompensated from her Alzheimers that she could no longer eat and we were not going to prolong her suffering with intubation.  After multiple escalations with the Nursing Home Leadership, I was finally given permission to come see her the next morning.  Unfortunately, she passed away….alone….before we made it.

My mom was so much more than a victim of Alzheimer’s and COVID.  I was (and still am) furious that she passed away in isolation and alone - she deserved so much more than that.  She was a vivacious woman who literally gave a homeless woman the shoes off her feet while shopping one cold winter day in Chicago.  That’s why I chose this picture to memorialize her - this was at the outset of her Alzheimers when she enjoyed nothing more than spending time with her grandkids - we were on vacation at the beach and we had a blast.  I still laugh at that stupid hat.

I think it coincides with time more than finishing the project, but I do feel a sense of closure of late with regards to the pandemic.  It finally feels like we’re getting back to normal.  We’ve stopped wearing masks in the non-patient areas of the hospital, and this week we sent out our final “COVID dashboard” to our hospital leadership.  I can look at this piece of art and not cry; my husband was worried that I would be sad every time I worked on this project, but that really was not the case. In fact, writing this narrative is the first time I’ve cried in months.  There was a good year where I cried every single morning before I got up and went to work and did all the things expected of me as a physician, a hospital leader, a mom, and a wife. 

So, I send you this project with a sense of accomplishment, the knowledge that my mom would be embarrassed that I chose this picture of all the ones that I could have selected, and a feeling of finally coming out on the other side scarred, but healed.  Thank you for sponsoring this; I know my story is one of millions out there, and I’m hopeful that others are seeing the light as I am now too.