Scenes from a Son’s Life as Primary Caregiver/Patient Advocate: Chapter 1 – Real & Surreal

As Forest Gump (played by Tom Hanks) expressed, “My momma always said, ‘life is like a box of chocolates, you never know what you’re going to get.’” While we can debate the deep interpretations of that quote, on a basic level it’s clear the overall intent of momma was to convey that life is unpredictable – no matter how much we plan and move forward accordingly. Isn’t that true for all of us?! We’re born into families of all different kinds: socio-economic, geographic, ethnic, education, etc. No matter who we are, where we come from, where we are now in life, and what differences we have, there’s a need for connection on some level and a common thread that usually embodies who we are – a love, respect, and need of “family,” however we choose to define it. “It” certainly can be a complex definition and over the years mine has taken on different iterations. For me, even amidst the most difficult times, one thing that has always been certain is that my parents have been there for me during my most difficult challenges, personally and professionally. Now, it’s my turn to be there for them during their most difficult challenges of serious health issues. In many ways, watching them go through everything and experiencing it as their primary caregiver/patient advocate is simultaneously real and surreal!

There are countless “scenes” since the Spring of 2018, but like most caregivers/patient advocates there are some that have left indelible impressions in my mind, heart, and soul. I will share some of those (in no particular order), starting in this “Chapter 1”…

Scene 1: Beginning of the Journey

It can’t be understated how surreal it was watching my mom’s health deteriorate so quickly in May 2018. My mom’s life was quite full up until her diagnosis of Polymyalgia Rheumatica (PMR) in 2017; personally and professionally. Although the various health issues brought on by PMR slowed her down over the next year, I couldn’t have anticipated or imagined what was happening. No one could, especially considering her condition likely hadn’t been properly diagnosed in 2017 as the much more serious diagnosis she received in June 2018 of Systemic Sclerosis.

Amidst the surreal reality of her health crashing, there was no time for emotion. It was all about focus and kicking into caregiver/patient advocate mode; likely similar to how my mom cared for me as a child when something happened. (Ask her about me falling on the boardwalk in Atlantic City…and lots of “owies” from dozens of splinters.) It was instinctual and necessary – assessing what to do. In this and innumerable situations since, whether acute or chronic, here are some questions that have been essential to consider:

• What’s going on and which current physicians are best to contact?
• What questions need to be asked?
• Seems like something may have been missed by healthcare staff – who do I speak with? How do I get to them?
• What’s the best way to bring up a medical topic to a doctor or nurse so that I’m taken seriously?
• Who do I know in healthcare that may be helpful in this situation? Will they be open to talking with the doctors? Will the doctors be open to talking with them?
• When and how is it best to communicate with my parents as I’m learning more from healthcare staff?
• What exactly do I communicate to my parents so there’s clear comprehension of the situation, especially decoding physician-speak as necessary? When is best to do so?
• How is it best to handle the topic of a current advance directive with family members?
• How, what, and when to communicate with other family members? This includes honoring my parent’s wishes about this topic.
• What does the insurance policy cover and are there key restrictions?
• Is there a case manager at the hospital or clinic that can help with anything?
• What outside resources are available to help in any way? Are they good, reliable, etc.?
• And…SO much more!!!

Bottom line: there are so many things that are important – often vital – for a caregiver/patient advocate (whether family member or hired) to consider ongoing and simultaneously, regardless of whether it’s in acute or chronic situations!

Scene 2: Dialysis

Bearing in mind there have been so many challenging times along the journey, it’s hard to say something was more so than another. This is right up there. As I shared in Kidneys and Lungs and Heart, Oh My!, my mom was put on dialysis in that first day after arriving at Cleveland Clinic Florida in June 2018. It was scary in and of itself, but there was deeper meaning for my mom. Let’s just say this one had an extenuating reason it was so difficult. Her dear mom (my beloved grandmom) needed dialysis to continue living in her early 90s, but she refused because she had had enough poking, prodding, and living a limited existence – and she passed away within a week.

My mom had always said – including during the prior month – that if she ever needed dialysis, she would emulate my grandmom and refuse. So, when the nephrologist at Cleveland Clinic told my mom she needed dialysis with my dad and I standing there, it felt like we were in the scene of a movie – so surreal. What was she going to say? Would she follow through with her stated wishes for no dialysis or not? My mom was barely coherent and because of that we’ll likely never know for sure what played a part in her going against her own stated wishes…but off she was taken down the hall.

Dialysis continued for the remainder of her hospital and rehab stays in June 2018, then as an outpatient. She continued three times each week intermixed with being back in the hospital twice that summer. Initially, her nephrologist was providing hope that her kidney function might improve to the point where she could stop dialysis. This kept my mom motivated, but as things weren’t improving the doctor started “preparing” her for a reality that dialysis would likely be needed for the remainder of her life. My mom was not happy and began expressing constantly that she may decide to stop, because she couldn’t live that way…and it would mirror her mom’s decision. It was hard to hear, knowing that decision would take her life.

I didn’t know what to say sometimes, but I always went to my natural place of understated positivity…and possibly at times not coming off as understanding of her feelings. Considering the fright deep down of losing my mom, it was (and still is) hard sometimes to be simultaneously a dispassionate and compassionate caregiver in certain situations to get things done and communicate effectively. Related to dialysis, it was a constant 24/7 living with the fear she may “pull the plug”, so to speak. But, I kept the understated positivity flowing, even if at times it didn’t appear outwardly like she cared for it or knowing if it was having an effect. Things are fluid and what works one time may not work another.

As this scene comes to a close, I’m happy to report that the combination of all the healthcare intervention, keeping her on a strict diet, the medication called Captopril, and other key factors (including possibly my understated positivity?) played a part in her kidney function getting to a level where she was able to come off of dialysis three months later in September 2018. That was a huge sigh of relief and was the end of this “scene” that encompassed a daily dose at the intersection of real and surreal!

Scene 3: The Cloverleaf Conversation

So, you may have thought I was done talking about dialysis. I am, but there was an experience on the road home from a dialysis session that is etched in every aspect of my being. As was especially the situation during those first few months (and since) after my mom’s health crashed, there was a lot of blood work being done to constantly assess where my mom stood on many fronts – kidneys, lungs, heart, and so much more. There were drugs taken and stopped because they were either causing a physical reaction or some counterproductive lab results. It was about trying to find the right combination. Educated and experiential trial and error by the doctors, so to speak. During one particular visit to the NextStage dialysis center in Parkland, Florida (which was a nice as you can get, but is no longer there), we were waiting for lab results from Cleveland Clinic Florida. Having not heard anything, we were wondering if everything was ok and at that point in the roller coaster journey hoped “no news is good news.” My mom was so exhausted from dialysis, the Systemic Sclerosis fatigue and her most recent hospital stay that ended just a few days earlier.

On the drive home, as we exited the Sawgrass Expressway, I got a call from one of her doctors who said, “you have to get to the ER immediately and they’ll be expecting you.” Considering my mom had 17 hospitalizations between June 2018 and April 2020, I just don’t remember what that issue was about. What I do remember was this experience felt like my mom and I were suspended in time, in slow motion, like the effects in a Quentin Tarantino movie. The phone call ended as we came off the Sawgrass Expressway loop onto the Florida Turnpike. Then, simultaneously, I told my mom she had to be admitted to the hospital (again) as I immediately got back on the cloverleaf to reenter the Sawgrass Expressway. What happened during that particular ER visit/hospital stay isn’t clear (without referring to notes), but what it is etched inside of every part of me is the dream-like experience during the “Cloverleaf Conversation” – telling my mom the news and in a heartfelt, compassionate, yet energy-less way, “I’m really sorry mom, but we have to go back to the hospital.”

Real and Surreal!

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Caregiver/Advocate Takeaways

• Caregivers and Patient Advocates are in every culture around the world, caring for people of all ages. It’s not just the people that are aging, but also the young with disabilities, middle-aged with cancer, and countless other scenarios at the intersections of age and illness.
• 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.
• If your loved one or the person you’re caring for has an advance directive, know where you can access 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 very stressful situation.
• Find out if there’s a case manager at the hospital or clinic that can help you. They can be a tremendously helpful resource and ease some your stress.
• Remember: if you are the patient’s healthcare surrogate either by nature of your relationship or through legal documentation, you have a right to receive information about the patient. As in a previous post, I recommend reviewing the American Hospital Association’s Patient’s Bill of Rights.
• In acute situations, or any time, try to breathe, remain calm, and be lowkey positive – the patient and other loved ones have a better chance to “hear” what you are saying, as well as feed well off that rather than from frenetic and/or negative energy!

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Thanks for reading Real and Surreal: Scenes from a Son’s Life as Primary Caregiver/Patient Advocate – Part 1. 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.