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The NSPA Blog

My Father’s Death During The Pandemic

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Posted on October 30th, 2020 by Bettina Carlson, under COVID-19 Stories, Death & Dying, Patient Advocacy, Seniors

My father died three months into the coronavirus pandemic. Not of COVID-19. But because of despair and a broken heart. 

He was 83 years old. He lived in a beautiful Assisted Living facility, with great staff members. He had his own room with a picturesque view. We had furnished his room with furniture from his own home to create a sense of continuity and familiarity. He had no chronic illness. He was on two medications; and one of those was for his scalp. But – he had dementia, moderate dementia.

He joined and participated in most of the many activities the home offered. He was mostly happy and always, always singing a song. He was well-liked. He was at home.

Between my sister and a Senior Advocate (similarly like me) we had hired, my dad received multiple visits per week. Since he lived across the Atlantic, I visited about two times a year for one to two weeks, spending every day with him then. I know, what a gift!

When the AL home went on lockdown in early March, life as my dad knew it and felt familiar and safe with, abruptly stopped!

At first, we still called him. But those phone calls were mostly unsuccessful. Like before, either my dad would push the wrong buttons and mute himself, or put the call on hold, or disconnect the call. And even when the connection worked, we didn’t always connect in his memory; he wasn’t always sure, who was on the phone. I can only imagine how that must have made him feel? I know for sure how it made my sister and I feel – frustrated, sad, worried, helpless, not at peace. 

As the weeks went on, the phone calls were no longer an option. My dad’s skills had deteriorated. Occasionally, a caretaker would call my sister so she could speak a few words to my dad, and so he could hear her voice. It was a sweet and appreciated gesture. 

But in the end, the loss of personal visits had such an adverse impact on his will to life that could not be mitigated. His family was gone as far he “knew” it. Dementia was not allowing him to understand what was going on, and maybe it would not have mattered much if he had understood it anyway? Last Christmas, when we celebrated our last family gathering together, he said to me: “If I cannot see my family, what reason do I have to live?” Foreboding words!

And within two months of the restrictions, his words became reality. My sister received a phone call from the home to inform her that our dad was becoming very quiet and disengaged and that he had stopped singing! That was the tell-tale sign of trouble! The home invited my sister to visit with him as much as she wanted in an effort to breathe life back into him. She did. 

For a few days it looked as though the visits could help, and only now did my sister inform me of the situation, which she had kept quiet in order protect me from feeling scared and helpless being so far away. I get it.

We face-timed when she was visiting with our dad. He was lying in his bed, more absent than present. But he still tried to speak a few words to me. I held on to hope that somehow he would recover and I could see him again, once traveling was an option again. 

But my hopes didn’t come true. My dad’s life force was gone too far. He declined again. And now, he gave up eating and drinking, too. My sister placed another face-time call with me, so I could say “Goodbye.” I’m tearing up with the memory of this call. My dad was unresponsive and breathing so heavily. It was the longest and hardest face-time call ever. I kept telling him memories, stories, expressing my love for him, even sang a song for him. I didn’t want to let go. This was Sunday evening. 

After a restless night, on Monday morning I knew what I had to do. I made various phone calls to gather travel and immigration information, booked a flight, and was on a plane four hours later, racing against time. 

When I arrived at my destination, my dad had waited for me. 

My sister took me straight to my dad. We entered the building with our masks on, and went straight to his room, not engaging with anyone, not touching anything, as per the home’s stipulations. 

I spend the majority of my time over the next three days, his last three, by his side. Sharing last thoughts with him, dabbing his hot skin with cool moist wash clothes, cleaning his mouth, holding his hand, carefully hugging him a few last times, reminiscing, and on the last day, just sitting there quietly as not to distract him. I lost all sense of time. The tick-tock of the clock was just a rhythm to keep me breathing. It was so emotionally complex; I cannot put it in words.  

The staff was awesome, they assisted with repositioning my dad’s body every few hours and administered pain medication. They checked in if I had any needs, explained the death process, and otherwise left us alone. 

The staff had created the most heartwarming peaceful set up: an aromatherapy diffuser that filled the room with a nice calming scent, a CD player that quietly played one of my dad’s favorite CD’s on a loop, a little tray with a candle and a little wooden rosewood cross that fits perfectly in a hand. (I held it my hand as I proofread this story).

On his last day, I left his room at 11 pm at night, not sure if I should go. I had a rollout guest bed in his room, I could have stayed. The night nurse promised to call if anything occurs. 

I had just said “Good night” to my sister and had climbed into bed when my sister came into the room shortly after midnight and said: “He did it!” 

We drove to the home and spend the night with our dad. One on the roll out bed, one on the recliner. We didn’t sleep much, if at all. But amidst all the pain we felt, it was peaceful in the room. No one disturbed us. Just us and our dad, his soul at peace. And the moon shone so beautifully through the window. 

While my sister left in the morning to take care of some business aspects of our dad’s passing, I stayed in wake with my dad. He was allowed to remain in his room until the next day. I remained in his room with him for many of those hours. Grieving and grateful.

So, while my dad’s death was prompted by despair and a broken heart, he died in peace and with a mended heart. And my sister and I were at peace, too, albeit grieving. 

I am so grateful for our experience. I know it’s not the norm. It worked for us for a number of reasons; the most important ones: (1) Not one resident or staff member had been diagnosed with COVID-19 leading up to my dad’s decline (nor since as of this writing). (2) Each resident has their own room, so we could safely sequester ourselves in our dad’s room. (3) The director of the home applied professional and compassionate judgment with the presenting data on how to serve the different needs of all of her residents (and families). 

This is my family’s story. I wish, we all could experience similar stories. I know, we don’t. And it pains me. But I’m not helpless in my pain. Let me tell, you – I, along with our compassionate team at NShore Patient Advocates, will advocate for our seniors in congregate facilities to have the most dignified experience possible. That’s how I love to share my gratitude. That’s what my dad would want me to do, too. 

Be blessed! Peace!

Teri’s Corner

When mom or dad can no longer live alone. Daily Herald. https://www.dailyherald.com/entlife/20200906/when-mom-or-dad-can-no-longer-live-alone

Weight, health, and avoiding the ‘COVID 15’. Daily Herald. https://edition.pagesuite.com/popovers/dynamic_article_popover.aspx?artguid=a8c9b8c6-5833-42a0-8998-378d15720cd0&appid=1031

Why do I call myself an empathy enthusiast? NShore Patient Advocates Blog. https://www.northshorern.com/why-do-i-call-myself-an-empathy-enthusiast/

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