My Dad passed away from COVID pneumonia after 34 days in the ICU.  When looking for information about what to do, what to expect, and questions to ask I found a lot of material for hospital workers but very little for family members.  As a result I pulled together pieces of my experience in hopes of helping others going through a similar situation.  The information I’m going to share is anecdotal, and since everyone’s response to COVID is different I will say upfront that not everything that happened to us will match your experience, but if only one thing does, it’s worth the read.

 

Nothing about this journey is easy – expect to question everything you thought was true; expect to be happy one minute then mad and sad the next; expect to be emotionally and physically exhausted; expect to feel overwhelmed by information one day and like you barely got an update the next – you are on a roller coaster and nothing can prepare you for the ride.  However, if you can hold on to love from your support system and faith in something greater than yourself, the ride will end and regardless of the outcome you will be stronger for going through it.

 

 

Despite my suggestion above, you cannot force someone to get medical care.  My Dad was sick five days prior to my mother calling an ambulance to take him to a hospital.  He was adamant he didn’t need medical attention despite his symptoms, which included inconsistent oxygen levels and stomach issues.  He was also mumbling; everyone thought he was complaining under his breath, but more likely his lack of oxygen was causing incoherent speech.  It was hard to recognize the difference, especially since his oxygen levels improved; then suddenly everything got much worse.  This virus comes on slow and then very fast.  Don’t wait.

 

 

While my Dad was in the ICU, my Mom was also diagnosed with COVID pneumonia.  Because we caught it during early symptoms – intermittent cough, low temperature, slight “crackling” in her lungs – she was a candidate for the antibodies.  Similar to my Dad, my Mom seemed to be getting better with prescribed medication for COVID and pneumonia and then suddenly she didn’t have enough breath to walk across a room.  We didn’t wait to get positive results from the first test, we had her tested again and with those results we immediately started calling antibody distribution centers.  Due to high demand, it took us two days to get an appointment and two additional days for her to get the infusion.  Since there is only a 10-day window for eligibility from a positive test result to infusion, you must act immediately.

 

At the time of writing, a candidate for the antibodies must have a positive COVID test and be referred by their physician.  Here is the link to COVID-19 Therapuetic Locator which includes a current list of monoclonal antibody distribution centers in Massachusetts. 

 

 

My family does a lot of research and knew every available traditional and alternative COVID treatment.  There were many instances the information was helpful, however it can become a distraction during conversations with certain doctors.  It’s important to ask about everything, but if your medical team indicates they aren’t able to provide your requested care because it doesn’t meet CDC guidelines, move on.  The hospital is not going to risk their license because you want them to try something.  Stay focused on the options available so you can make the best decision based on what is provided by your medical facility.

 

 

We called the hospital twice daily and they called us daily after rounds.  We were fortunate, every doctor and nurse in our hospital encouraged us to contact them and to ask questions.  We received return calls from the head of our local infectious disease team and our doctors did whatever research we asked to answer our questions about newer COVID procedures.

 

Most importantly, when the medical team knew my Dad wasn’t doing well, they respected my mother’s early wishes to keep him alive until she got there.  Obviously they have medical and ethical obligations to follow family wishes but the care and kindness with which they follow through matters.  My Dad’s medical team gave my Mom, brother and sister-in-law time to be with my Dad to hold his hand.  They even removed all the tubes so my family could see and touch his face unobstructed.  Those small acts of kindness mean the world to families and have made us life-long advocates of our local hospital.

 

 

I took notes during each call, I set up a group text to share information with family members, and then I transferred all notes to a google spreadsheet.  I sent everyone a link to the spreadsheet so if I wasn’t available for a call everyone would have the most up-to-date record of my Dad’s health and anyone could step in.  This isn’t the time to control information, the more people that know what’s happening and can help, the better the situation will be. 

I did the same for my Mom and it was extremely helpful when she received the monoclonal antibodies.  Since I wasn’t able to enter the hospital, I sent a copy of the spreadsheet in with her because I knew COVID fog had her forgetting timelines and not remembering all of her symptoms.  Don’t wait until your loved one’s condition is severe, start taking notes at the first sign of symptoms.  Here is a sample spreadsheet for you to reference.   

 

 

 

We weren’t sure how my Dad felt about intubation, but since he had COPD I knew it was likely, so I had to ask.  During our first hospital-assisted Zoom call my Dad was coherent and recognized the severity of his condition and said, “I will do what it takes.”  I said, “Does that mean you want to be intubated if it is necessary?”  He said, “Yes, I want to live. I will do what it takes.”  Since my father had mentioned contrary feelings prior to being admitted to the hospital, it was important for me and my Mom to hear his wishes.  Less than 48 hours later we would be forced to make that important decision; I was glad I asked.

 

 

We had a Zoom call with my Dad at least two days a week.  During his 34 days in the hospital my father was only conscious during one of our calls, but the interaction kept us going and he responded well when we had them.  He often showed improvements in his medical stats, and we always felt better after seeing him.

 

NOTE:  Days and weeks of sedation and medications altered my Dad’s appearance, which was difficult for some family members to see.  It’s hard to prepare mentally for these changes so you want to keep this in mind, especially if young children will be on the call.

 

 

In the beginning we were in shock responding to the reality of my Dad’s hospitalization, and distracted by our efforts to keep my Mom out of the hospital, we didn’t think about asking for a meeting.  During the second week, the medical team requested to meet with us.  At that time, my Mom wasn’t ready to hear any negative information about my Dad so we stayed away from tough questions during that meeting. We had another meeting schedule for the day my Dad passed away.  Although it is unlikely knowing more would have changed the end result, it would have helped us be prepared for all the possible outcomes.  Included here is a list of questions for you to consider.

 

 

We asked ourselves, what if we forced him to go to the hospital sooner?  What if we didn’t intubate him?  What if we could get my Mom into his hospital sooner to hold his hand?  None of these “what ifs” would have changed my Dad’s condition – he had COPD and he got COVID pneumonia.  My Dad had one day of lucidity in the hospital and he said, “I know this is very bad.  I know I am a worst case scenario.”  He also said directly to my Mom, “Thank you for sending me here, you saved my life.”  The bottom line is, “what ifs” don’t help any situation, they make you second guess yourself, and you can’t afford to do that during this already difficult time.  Accept what is and find strength where you can, you will need it.

 

 

Faith kept me sane during the most difficult experience of my life.  I had faith my family and I were doing everything we could from the outside which gave me peace throughout my Dad’s stay in the hospital.  As a family, we prayed daily for a full recovery, and there were days we believed it was possible, but sadly it was not to be.  My faith didn’t end because I didn’t get the outcome I wanted, it got stronger because we came together as a family in loving care of my Dad.

 

We buried my Dad on his 75th birthday.  There are waves of sadness over the loss of my father, along with moments of sheer gratitude for the overwhelming love and support from family and friends.  It’s important to accept both.  I realized staying sad or mad doesn’t keep my Dad’s memory alive, living a life that honors his memory and carries on his legacy does.  It’s up to me and my family to continue where he left off.

 

Sharing my family’s experience is part of honoring my father’s memory.  He would be the first one to lend a hand to a friend going through troubled times.  I hope these tips provide you a helping hand and support as you navigate COVID (or any sudden hospitalization) with your family.