I haven't written a blog post since December 2020 and had dramatically reduced my writing during the pandemic because I didn't think anything I had to say was nearly as important as what was happening in the world. My last blog post came shortly after my dear Uncle Pete passed away and COVID was surging as people traveled for the holidays, celebrating Thanksgiving and Christmas without taking proper precautions.
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| Glacier National Park July 2020 |
I've missed blogging. I like organizing my thoughts this way. Many of my past blog posts have tried to make connections between two things which may seem unrelated. I like to draw these connections. With this post I'm seeking ways to heal my broken heart and hoping that someone might learn something from my family's experience. Perhaps I've gotten some of the facts wrong... the stress level was unbearable and I'm forgetting details. It isn't intentional. At the time of this writing, over 560,000 people have died in the US and 2.92 Million people worldwide from the Coronavirus. (That makes the US about 20% of the deaths from the virus worldwide). I'm sure others have similar stories of loss and sadness from the virus or from losing loved ones during the pandemic where they wouldn't be together. My heart goes out to every single person who has lost someone they loved during the pandemic. I think it always must be hard to lose someone, but the inability to say a real goodbye or be surrounded by loved ones while mourning seems to hurt just a little bit more. Here's how I remember what happened to my parents.
In December 2020, nine months into wearing masks, physical distancing, a lot of isolation, restricted travel, and not eating out, my Mom and Dad were hospitalized in Florida. Dad was admitted on 12/18/2020 and my mom followed the day after, 12/19/2020, which happened to be my dad's 76th birthday. They both tested positive for COVID19, and they both had pre-existing conditions that put them at higher risk for getting sick and having a negative outcome. They knew they were at high risk. In fact, my Mom had been sick for almost the entire year of 2020. They promised us they were being extremely careful. They would drive over to friend's houses and stay in their car and talk to their friends over the phone just to see friends but not get close to them. They have such great friends who have been so supportive to us through this tragedy.
Most people asked right away "How did they get it?" Honestly, we'll never know. Dad worked at Home Depot, coming as close as he possibly could to his childhood dream of owning a hardware store. He was "The Paint Man" and he promised he wore a mask during all of his shifts, washed his hands, and would even come home, remove his clothes next to the laundry machine and go straight to the shower so he wouldn't go near my mom until he was clean. There was a whole bin of Clorox wipes, gloves, disposable masks, and hand sanitizer right next to the door when we arrived at their home to pack it up... and cough medicine and tissues on the counter. They seemed well prepared. (They also had a TON of toilet paper.) Perhaps Dad missed a hand wash. Or maybe he ate a snack near someone asymptomatic but sick in the break room. Or maybe his mask slipped down under his nose while his hands were covered in paint and he couldn't fix it. He was admitted to the hospital first, but for sure they were both sick for several days at home. I ordered a pulse oximeter while we were Skyping when I heard them both coughing maybe three days before they were admitted thinking there was really nothing more I could do to help them. It was waiting when my siblings and I arrived to clean the place out. I had been too late.
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| Thanksgiving 2019 |
Mom could have contracted the virus, too. As I mentioned earlier, 2020 was a medically complex year for her, in and out of medical facilities and the hospital, so being around lots of sick people while also being vulnerable could have gotten her sick. They always shared things, so whoever got it was thoughtful enough to give it to the other one. My heart kept telling me to get on a plane to help them, but I couldn't get over the fear of seeing all my own patients and their families at work and then getting on airplanes to travel more than 3000 miles to see my parents, knowing I could get them sick myself. So I never went. The last time I hugged them was Thanksgiving 2019.
Initially when they were admitted to the hospital, my brother, sister, and I were able to video chat with each of them for a few days. Piece of advice: if you EVER go to the hospital and have the ability to bring your phone charger along, do it. Dad was on a COVID floor and put on oxygen right away and told me he felt crummy. He said he was bummed they didn't give him chocolate pudding on his birthday - he got applesauce instead - so his sense of humor was intact. Mom was admitted directly to the ICU because her blood counts were so low, but that was her baseline all last year, so she didn't really seem that different from her usual self. (Side note: It's mindboggling that our healthcare system doesn't share information so that their medical records were not readily available. Why do I have to tell an ICU nurse my mom's list of diagnoses when she's in the hospital and her doctor's office is a few miles down the street?! I wonder how many people have died just because the US Healthcare System is so messed up. I digress.)
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| Thankful for Video Chats |
Soon we learned that Dad also had pneumonia and difficulty breathing. Mom was moved into Dad's room, having been deemed medically stable and no longer needing the ICU. We were so glad they were together, but that was short-lived (unlike their 53 year marriage). He turned a corner that night and took her place in the ICU needing a BiPAP to help him breathe and getting agitated if the oxygen wasn't at full flow. On a BiPaP, you can't really talk - though you can move your mouth. For a few days he was able to see us and respond to us and tried saying some words, including mouthing that he loved us, which will forever be his last words in my mind. And then he got worse and we had to make really hard decisions.
Here's where I hope we can be helpful to someone else. Piece of advice: If your parents have comorbidities or are over 65 years old, sit down with them while they're healthy, while they're not in a medical crisis, while everyone is calm, and ask them about how they want things to go in the end. It is a HARD conversation, but it makes a huge difference when a stressful moment comes. Tell them the importance of having a living will and sharing with you what their wishes are and where they're keeping the paperwork. Get copies if you can. A living will (or advance directive) is a paper that indicates your wishes for medical care and should go with them if they ever need to go to the hospital so the hospital knows their wishes, too. Let them handle the hard decisions for you and have it decided in advance. Fortunately, we had sorta done that with our own parents, though they didn't bring the paperwork to the hospital and there was confusion in the heat of the moment, but still... we weren't completely in the dark. Mom's oxygen stayed mostly normal throughout her whole hospital stay, but she had starting getting really confused right when things were happening to Dad, which I think was a blessing, but which also left it up to the three of us to decide what to do.
Backing up for a moment, in 2018, I read Atul Gawande's book, "Being Mortal: Illness, Medicine and What Matters in the End." The basic premise is that Dr Gawande, the author, is a physician whose father is nearing the end-of-life. He realizes that not only does he not have enough of the answers for his own family, but that he also does not guide his own patients down some paths that could ultimately help them. This was the first time I seriously considered that when someone is very sick, they may not want every single medical approach used to try to keep them alive. Some medical approaches can keep you in a coma for a long time and, while that’s your choice to use those options, it’s possible you’d prefer to allow life to end more quickly as the likelihood of recovery from those extreme medical treatments may be less successful with more comorbidities or older age. This was exactly the scenario we faced with Dad, first, and then Mom two weeks later. Both were presented with options. One option would have kept them alive, but almost definitely would not lead to them ever going home and returning to their prior existence. We really only considered these options while waiting to find out if the facilities they were in would let us come and say goodbye to them, but when we were told that would not be an option, we didn't want them to suffer. This quote from the book stood out to me: “We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival but really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. Those reasons matter- not just at the end of life- but all along the way.”
The book lists questions that should be asked nearing end-of life such as "what are your fears?" and "what are your hopes?" and "what is your understanding of the situation and its potential outcomes." It also talks about weighing short term versus long term options, considering risks versus benefits, and gives praise to hospice and palliative care, which are not the same, and which are often misunderstood. It was the beginning of my learning about end-of-life care and it led to a family meeting with my parents, sister, and brother, where we talked about some really key things, including their living will. We also talked about their legal will and found that it was long overdue for being updated. (It still had my sister as my legal guardian if something happened to my parents. I was 33 at the time!). We discussed where they kept their finances, but they elected not to share their financial circumstances with us. We should have asked them to add one of us as a beneficiary to the accounts in addition to them, but the likelihood of both of them dying two weeks apart like they did was really tiny so who could have known?! We knew their life insurance policy company and numbers and knew where they kept their passwords for online information. These are all things that we did right that I think other people need to discuss and made things easier for our family. I had a manila envelope with a copy of their will and living will, a copy of their life insurance policy, their social security numbers, and a list of contacts they thought were important for us to reach out to if something happened to them such as their lawyer and accountant.
Anyways, I'm pretty sure it was Christmas Day when Dad tried to ask the nurses for something and they gave him a notepad to figure out what he was trying to say. He wrote "milkshake." He wasn't allowed to eat or drink on the BiPap, so they couldn't give him one and I'm shocked he was able to manage legible handwriting since it always looked like squigglies to me. My Dad ALWAYS loved Chocolate Milkshakes from McDonalds so when the nurse asked if that had any meaning to us, we all had to laugh. I'm sure he probably thought life wasn't worth living if he couldn't have his favorite treat.
Another piece of advice: find yourself a best friend who is an Emergency Medicine Physician and loves your parents as much as you do so that when you ask her for help with complex medical decisions, you know it's the best recommendation possible for your family. This piece of advice will be nearly impossible for most people to achieve because you can't have my best friend and she's the world's greatest human, so maybe just find some medical friends you trust for advice when it's needed and know that making these decisions is really hard so having people to discuss them with is really helpful. My sister also has a best friend who is a nurse who gave us helpful advice throughout this experience and is part of our family, too. Having healthcare provider friends is just the best and really helps with big medical decisions.
We said goodbye to our Dad, all three of us together, on a video chat arranged by a very kind nurse, about an hour before he passed away on 12/26/20. The nurses were so helpful to us having already missed their Christmas time with their families to be with ours, and certainly having witnessed countless other people die in the preceding months. She asked us for a list of important names for her to tell him who was with him before they took him off the BiPap. My Mom was somewhere in the same building, unable to be there with him, and not knowing what was happening. I like to think he knew that we were with him and that it was OK for him to leave us behind. (To be clear, I'm not OK with living life without him, but he didn't need to know that.)
So now, my mom is in the hospital in Florida, testing negative for COVID but still disoriented and confused, my sister is in Connecticut, my brother is in Washington DC, and I'm in Seattle. We need to get my Dad transported from Florida to Connecticut for his funeral. And we can't have family or friends there - just immediate family up to 12 people. And... we have to tell my mom what has happened. Because she doesn't know. And when we tell her, at first she doesn't understand, and then she doesn't remember. And so, we have to tell my mom, via video chat, three days in a row, that our Dad - her beloved husband and best friend for over 50 years, has passed away. Talk about watching someone's heart break. Repeatedly. Her heart was actually screaming, I think. The sounds that come from such intense heart break are unique and hard to describe. Even a few days later, on one of our calls just between the two of us, she asked me about Dad again to make sure it was true, begging me to tell her that he had not suffered, almost like she heard it in a dream and couldn't bring it to reality. And then her nurses tell us they want to discharge Mom to rehab for her to get stronger and eventually go home, but of course she doesn't want to go home if he won't be there. I cannot even begin to express how much agony those moments held and how I keep replaying them over and over in my head. My heart broke for her so many times and none of us could be with her - or even with each other. The medical facilities all kept saying we wouldn't be able to come in and be with her - and for us to even try to fly there only to be turned away seemed like even more risk of getting sick or transmitting the stupid virus.
I haven't gone into much detail about what the day-to-day looked like while they were in the hospital. Honestly it was a bit of a blur. I was talking to nurses or doctors between 4AM and 5AM PST (Seattle) because they did shift changes at 7AM EST (Florida) and then I would see my own patients. Sleep cycles were disrupted, the stress of everything made eating habits and exercise routines fall apart. My brother, sister, and I were in constant contact with one another and I would sit in my car during my lunch hour trying to video chat with my Mom as much as I could, and, early on, hoping to get some time to chat with Dad. We quickly figured out the best times to call nurses and how to set it up so we could actually see Mom and Dad through various video chatting options. Since we don't all have iPhones, we figured out that we had to do our video chats through Facebook or WhatsApp and knowing our options was important, otherwise we had to leave someone out and it was hard to take in all the information and then repeat it again later on.
So Mom went to rehab. She started to get better, but she was really, really sad. So were we. She always had told us that she couldn't live without Dad and we all worried for her because we knew she couldn't stay in Florida alone. My sister was looking for a place for her to live in Connecticut, calling around to all the local facilities, because Mom was pretty sure she didn't want to stay with any of us even though she didn't want to be alone. My brother was on-deck, waiting to head to Florida to pack up all their stuff for a move. I applied for FMLA to take time off when she was cleared to go home after my second vaccine shot and told her she better rest up because Abby's Boot Camp was going to be hard work. (It's probably not a good idea for physical therapists to treat their family members, but I think that's because we would work them harder than our patients!) Everyone fell into roles and pulled their weight to get things going while we were also preparing for Dad's funeral which was going to be on 12/31/20. I think it brought Mom a lot of happiness to see us all together in Connecticut. I had flown home and wouldn't take off my mask the whole time I was with my family because so many people in the airports and on the plane weren't wearing masks and having watched my Dad die from COVID, I was horrified of getting the virus and spreading it. The day before his funeral, I Facetimed Mom and explained that we were going to have his funeral the next day and who we had invited. I asked if she wanted to attend virtually but I hated that none of us could be with her for it and thought it was reasonable if she didn't want to go through that alone. She chose to watch, so the next day, I Facetimed her from the cemetery so she could attend my Dad's funeral. Was this the worst it was going to get? Because it was horrible. I had headphones in so she could talk to me and I could be with her, but the only thing she asked was to see her grandkids and my sister and brother for a minute to look away while my Dad was lowered into the ground. That night as the rest of the world rang in the New Year, eager for 2021 to start, I sat alone in my hotel room on Facetime with my Mom, crying, talking about things we would try to do as soon as we broke her out of rehab.
Mom wanted out of rehab SO badly and we all wanted to bust her out, too. She asked me what I thought she needed to be able to do in order to go home and, the true Physical Therapist I am, I told her she needed to be able to walk to the bathroom without help. The minute she walked to the bathroom with a walker and only a little help, she called and told me I had better get ready to go to Florida. But that night she started having pain. All year long when she had been sick, she had been having some pain on and off, but she said this was a lot worse. Talk about feeling helpless - what could I do? I stayed on the phone while she waited for nurses to come in and try to get her pain medicine. She was moaning and crying out. I had to hang up to go to the bathroom and in the time I was gone, she left me a voicemail saying she wasn't going to make it through the pain she was having. In the morning, she was taken to the hospital. She tested positive for COVID19 again and was found to have other health complications. It was time for difficult conversations, yet again. The doctors asked for our opinion on treatment versus hospice, but we knew her chances of survival even with surgery were not good and when we asked Mom, she very clearly told each of us that she loved us and that she was going to go be with Dad. I couldn't believe my ears. Now my heart was doing the screaming. And so she was transferred to Hospice and we said goodbye and she passed away two weeks after Dad, on 1/9/21. A few days later, I flew back from Seattle to Connecticut, stood at the same cemetery, and watched my Mom join my Dad, feeling like I should have been Facetiming her like I had two weeks earlier.
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| RIP Mom and Dad <3 |
