Scenes from a Son’s Life as Primary Caregiver/Patient Advocate: Chapter 2 – The Longest Hour

Hi again! I’ve been debating for the past few days — what topic to write about today. Should it be a specific caregiving or patient advocacy topic (e.g. getting comfortable with the unknown, hospital/clinic protocol, etc.), or writing another installment of “Scenes from a Son’s Life…” As you can tell from the title of this post, I’ve chosen the later and as usual will weave in various themes that could be their own topic – and may very well be someday.

Before getting into this Chapter 2 of “Scenes…”, I want to share some exciting news (well, it seems to be) about 1 Day 1 Week. If you’re not aware, there was a soft launch of the blog to a very small audience at the beginning of this month and Friday I began a bit wider promotion. No big campaign. It’s been done so far via LinkedIn, direct outreach, and word-of-mouth. I’m thrilled to report that the blog is receiving wonderful initial response, in terms of comments shared after posts, personal notes received, and viewership. In less than three weeks, there have been 81 unique viewers who visit on average over 2 ½ sessions – averaging well over 5 minutes/session. While I have no background in assessing blog statistics, its saying people are staying a while when visiting 1 Day 1 Week and coming back for more. 🙂 And…they have come from all over the world, places large and small: Phoenix, NYC, Miami, Shanghai (China), Toronto, San Luis Obispo, London, Chandigarh (India), Denver, Atlanta, and many more. That includes two I never heard of, Laren in The Netherlands and Lac du Bonnet in Manitoba, Canada.

Whether I’ve mentioned your city or not, I genuinely thank you for visiting and spreading the word. I hope you will continue to join me on this caregiving and patient advocacy journey by checking back for my weekly posts (maybe more often sometimes), additional resources, and guest blog stories and comments, which you are sincerely invited to submit. Together, we can continue to grow the number of people who take comfort and learn from visiting 1 Day 1 Week.  

Okay, it’s time for more “Scenes…Part 2.” Actually, whereas Part 1 included three scenes, Part 2 is one big scene that includes a full array of thoughts, feelings, and emotions.

Setting the Scene

As the last weekend of March 2020 arrived, the Covid pandemic was relatively new to U.S. residents and the world. Extensive precautions were being considered and implemented in every aspect of life, with no place more so than at healthcare institutions. Strict new protocols were taking shape in hospitals and clinics.

At this point, our family had been thrilled that it had been almost three months since my mom’s last hospitalization December 30-31 for a suspected stroke, which fortunately turned out to be temporary expressive aphasia. Three months may not sound like a long time, but when someone’s most recent hospitalization amounted to their 16^th in 18 months you’re always wondering when the next is coming. Every cough (and there were a lot) I was wondering if her interstitial lung disease was getting worse, again. Every slight fever I was in fear of another infection brewing. Every wobbly step – even with a walker – I was concerned about another fall. And on and on.

So, as the weekend of March 28, 2020, approached, there were dichotomous feelings inside of me. In one way, there was the 3-month reprieve from hospital visits that were enabling a peak at what life could be – and had been before my mom’s June 2018 health crash. That lent itself to some feeling of “comfort,” so to speak. In another way – there were the unknowns of Covid causing deep concern because at that point it was known to be primarily deadly to the elderly and especially those with multiple co-morbidities, as with my mom. This situation was evolving quickly, and my concern had turned to fear because she had weekly doctor appointments and ongoing tests that had become essential to her survival.

How could we feel safe and secure going into the health clinic, and even more so a hospital where the number of Covid patients were rapidly growing (and dying) by the day?!

Well, I imagine you may have an inkling of where this is going…

The Scene

Sunday, March 29, 2020. I’ve settled in to get some work done when there’s a knock at my door. It’s my dad asking me to come check on my mom, who he told me had been having a progressively harder time breathing all morning. As I walked toward her room, I was running through my mind all of the things it might be based on the myriad of her health situations the previous 21 months. Covid was now added to the list of possibilities. When I saw her, it was immediately apparent this wasn’t something we could remedy with additional oxygen at home – it was time for 911.

When the paramedics arrived, we were prepared with our masks on, and they were decked out in gas masks like you see in the movies. By the time they did their initial assessment, my mom was barely conscious with a diminishing capability to breathe. They provided additional oxygen, put her on a gurney, and wheeled her to the ambulance. I went to get in with her but was told by the EMT that I couldn’t and no one other than patients were allowed in the hospital. Now fear struck deep inside of me, since I knew her history and health situation better than anybody…having seen and managed it day in/day out since June 2018. Every day during her previous 16 hospitalizations I had been there to advocate for her in different ways while monitoring the situation. Hearing I couldn’t be there with her, my body immediately felt a great unease thinking about those previous times:

• making sure she was getting needed attention (hospital staffs are often putting out multiple fires)
• questioning the true necessity of “protocol” tests that might/could/would potentially be dangerous based on her specific healthcare issues (there were times I had to correctly intervene to stop or suggest other intervention)
• making sure her medications were correct (hospitals have drug formularies and if a patient’s drug isn’t on it or primary, it is typically substituted – which can be dangerous for various reasons)
• and much more!

While not being able to advocate in those ways was difficult, the part that was most disconcerting was my mom not being at Cleveland Clinic Florida. She was taken to Bethesda West in Boynton Beach, because it was the closest hospital and CCF was not an option for the paramedics. It was beyond scary not being able to be in her room with the emergency healthcare providers, to provide her health history in as little or great detail as needed in the moment. That fear was only eclipsed by the one for losing her, combined with my dad and I not being able to be there at the end.

Within an hour, we received a call from the ER doctor with an update. It was frightening. She told us they did a Covid test, but results wouldn’t be back for days – as was the case early in the pandemic. Regardless, she said that my mom was unresponsive to treatment, and they are seriously considering intubation. Before doing so, she had to ask one question which sent chills down my spine – “Does your mom have an advance directive or DNR?” Knowing the answer, my dad and I looked at each other in a way I simply can’t explain other than “Oh My God!” (I’m getting chills throughout my body as I write about this.) The answer was “yes,” and the doctor asked me to read it to her. Afterward, she immediately asked my dad, “Do you want to honor this?” to which he breathlessly replied, “yes.” Knowing this, the doctor told us a few things:

1. she would not intubate
2. she would do all she could with other interventions to try changing the direction things were going
3. she would call us within an hour with an update

THAT was The Longest Hour!

My dad and I sat quietly, in anticipation of – we didn’t know. So many thoughts running through my mind, as I’m sure my dad’s, too. Again, the disconcerted feeling I had from not being able to be there to advocate was so uncomfortable. Yet, I had to put all the positive energy I could create out into the universe and down the road to the hospital.

Almost exactly an hour later, the doctor called. While I don’t remember her exact words, it was very close to, “We’ve done what we can and will continue to very closely monitor, but your mom continues to be unresponsive, and we don’t know what direction this will go. Even though no guests are allowed in due to Covid precautions, I think you both should come visit her in case it goes in a direction none of us wants. I will inform the desk to let you in.” That moment has left an indelible impression in my mind, heart, and soul. Writing (or talking) about it brings tears to my eyes to this day.

My dad and I quickly got ready and jumped in the car. This was an out of body experience, to say the least. The 10-minute ride wasn’t long, but it felt like an eternity. We actually talked a bit about what was going on and I’ll never forget what my dad said, “Todd, if this is it, she knows, and I know that you’ve given her almost two additional years of life.”

I need to pause.

Okay. When we got to the hospital, we had our N95 masks and goggles on, and they gave us gowns. I can picture things like they were yesterday. We walked through the ER doors, down to the nurse’s station on the left. They knew who we were because the doctor told them to be on the lookout and we were the only “outsiders” in there. A wonderfully kind nurse pointed to the ER doctor and another nurse, who walked us down the hall to my mom’s isolation room. All patients in that wing were being treated as Covid patients, whether positive or pending test results. There was an uneasy feeling being so close to Covid, but that was quickly negated by the concern I had for my mom. As we entered her room, we were given nitrile gloves to put on. My dad sat down in a chair to the right of the bed, which was directly facing the door. I stood to the left of the bed. The nurse stood to the back of the room in full protective gear, as if he was on the ground in Africa during Ebola.

After the nurse quickly reviewed my mom’s situation, he left the room to give us 10 minutes with her. That was all they were allowing us, due to Covid. Drawing on the experience with my sister when she was in a coma after a car accident in 1989 and what I’ve read about since, I knew many healthcare professionals believe unresponsive people can hear sounds and voices – even if they can’t understand or respond. Like then, I spoke to my mom and rubbed her leg in case that would help her know we were there. Fifteen minutes passed so quickly, and they hadn’t asked us to leave yet – so I continued hoping they would be delayed further, since we didn’t know if that would be the end. Five minutes later, my mom’s eyes began to open. Of course, she was very dazed and confused, but it was the first sign of responsiveness. Within another five minutes, she was slowly speaking gibberish (definitely not English) and although she was certainly still in grave danger, that gave us a sliver of hope. Being there when my mom’s eyes opened after wondering if this was a “goodbye” visit, brings up the same feelings I get 32 years after talking with my sister and holding her hand (hour after hour, everyday over two weeks) before her eyes began to open from a coma. Although different scenarios, it’s unfathomable to me that I’ve experienced these types of moments with both my mom and sister. Each have had lasting impressions on every part of my being, and bring tears to my eyes to this day…right now.

Big sigh…

At this point, we were kicked out of the hospital and then we had to hope the doctors would handle everything well – and my mom’s innumerable cat lives would continue. From an advocacy standpoint, I couldn’t be there – but I could make sure the doctors and nurses had my mom’s records, so they had a full picture of her history with Systemic Sclerosis and so many hospitalizations. I printed everything out, put it in a binder, and took it to the hospital. From that point on over the next week, the doctors and nurses were incredibly wonderful at communicating with me. They asked questions based on what they saw in the binder, and kept me up-to-date proactively and returned my calls, even if it was at night. Dr. Damaris Vargas, Dr. Samuel Charvit, and Dr. Madelaine Vilme really were the saviors this time for my mom, just like the team at Cleveland Clinic Florida led by Dr. John Donohue, Dr. Rute Paixao and Dr. Jinesh Mehta had done during my mom’s initial health crash in June 2018 and ever since.

I’m quite sure I can speak for my entire family in saying an endless thank you to all of those wonderful doctors, as well as the nurses, patient care techs, and other healthcare staff members! Truly!

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Caregiver/Advocate Takeaways

• As a caregiver/patient advocate in an acute (or any) situation, constantly make lists of questions to ask the doctors. Don’t assume you’ll remember. It’s tough enough when not dealing with a stressful situation. This is especially important during these Covid times. When you’re not allowed in the hospital, you can’t walk to find a doctor, nurse or anyone. It’s important to be prepared for the times you connect with them over the phone. Remember: they are pulled in many directions in stressful situations. Be kind. Be courteous. Be inquisitive. You know the patient best, so respectfully provide patient insight that may help. If needed, be firm.
• Know the American Hospital Association’s Patient’s Bill of Rights.
• If your loved one or the person you’re caring for has an advance directive, know where you can access it immediately for doctors and healthcare staff.
• Ideally family members have discussed an advance directive before there’s a need, so hopefully there’s less stress in an already stressful situation.
• Considering hospital visitor restrictions due to Covid, more than ever it’s important to find out if there’s a case manager that can help you with updates and accessing healthcare providers. If available, these managers can be a tremendously helpful resource and potentially ease some your stress.
• There are many studies – and wide belief – that people who are generally unresponsive or in a coma can hear loved ones talking, walking into the room, etc. Here’s an article on a study from the Northwestern University Feinberg School of Medicine. Google the topic and you’ll find many more articles.

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Thanks for reading Scenes from a Son’s Life as Primary Caregiver/Patient Advocate: Chapter 2 – The Longest Hour. As with other 1 Day 1 Week posts, you’re welcome to share your thoughts below and/or share a story as a full blog post of your own. Whether you’re a caregiver, patient advocate, or involved in caregiving/patient advocacy in some way, the worldwide community of caregivers and patient advocates can benefit individually and collectively from “hearing” what you share about your experiences.