The Perfect Storm

Ninety days ago (Oct 10, 2022), I wrote this blog entitled “Sacred Time and Silver Linings” about what led to me
putting Reduced photo me mom may 22JewishGPS’ work on hold, and my entire life on hold, and “temporarily” moving the last few years. In it, I mentioned that at some point I would write about the “Perfect Storm” that allows a person to pause their life in order to serve as primary caretaker for a terminally ill loved one. Now that I am 95 days out of burying my mother, I felt it was time to share about that “Perfect Storm.”

Financial Freedom

Whenever I would speak to my therapist throughout my time of caretaking my mom, she would ask me, “What are you Grateful for?” (This is actually apart of an exercise we do almost weekly called SO GLAD – check bottom of post for explanation). Each time I would say to her the exact same thing, “I am grateful that my parents worked hard, saved, and strategically invested so that I could afford to put my consulting business on hold, keep my house in ATL, and be here.” The reality is, I could have sold my house (let’s be honest, the market was oddly going through the roof throughout the time I was here), but I wasn’t forced to. My family’s financial wherewithal is a gift that few have and it was a gift to our entire family that my parents could have never foreseen in their years of working and saving. So, the first ingredient in the recipe for the “Perfect Storm” of caregiving, is the financial security to do it.

Physical Health

Okay, so what are the odds that four days after writing my last blog that I would shatter my left ankle and need my own caregiving Screenshot 2023-01-11 at 2.07.52 AM
for the last few months?!?! But it proves my second point even more than I could have articulated prior to this latest bump in the road. If for any reason, I had a physical challenge, a mobility challenge, a physical strength challenge, an invisible health challenge – I could not have taken care of my mom the way I did. As it was, I had a few medical challenges during my time in St. Louis including a an emergency appendix removal, a severe case of Covid (after three vaccines, double-masking and I caught it eating outdoors Dec 2021), and two major post-Covid health issues (cardiac and allergy). But, the vast majority of the 2.5 years here, I was healthy enough and had enough energy to take care of her and be aware of her needs 24-hours a day. I am thankful for respite care workers whom we engaged in May 2022 to give me some reprieve here and there, but the majority of the time, it was all on me. Some of you are aware of the personal health journey I embarked on Summer 2018 and that by the time I was taking care of my mom, I had lost over 100 lbs (with more to go). I cannot imagine that I would have been able to take care of her and this house if I had been 100 lbs heavier. And certainly, with the full immobility of a broken ankle, surgery and long recovery, I absolutely would have been zero help to her in my current state. So, the second ingredient in the recipe for the “Perfect Storm” of caregiving, is the physical ability do it.

Mental Health

If you have been following my blog for some time, you may remember my post in April 2014 called, “Zeh Lo Pashut – This is Not Simple” where I revealed a relatively new diagnosis of moderate clinical depression (and I don’t think I even mentioned then about a joint diagnosis of Generalized Anxiety Disorder and ADD). There is no doubt in my mind that I am so lucky to have found the mental health team I did back then, and that I STILL work with them consistently. Covid gave me the silver lining (another piece of SO GLAD) of virtual mental health because I was able to continuously meet with my therapist and psychiatrist while awayScreenshot 2023-01-11 at 1.58.58 AM from Atlanta. I am also so lucky that the two of them are amazing and that while it took more than a couple of years to find the right medicine cocktail (and the right coping strategies), that I arrived in St. Louis fully functioning with my mental health stable. Had my mom’s illness occurred back in mid/late 2013 or any time 2014 and early 2015, there were be no way for me to have been able to help her. I couldn’t get off the couch to take care of myself, much less another person. And managing the continually difficult news from her illness would have sent me deeper and deeper into hiding. Mental health is just as critical to this “Perfect Storm” as physical health is. Caretaking a loved one is brutal and it cannot be taken lightly – the caretaker will be impacted – often and deeply – through the journey. It’s critical that caretakers remember self-care, and that includes emotional health, and that they are honest when it has gotten to be too much, or if they aren’t in a stable emotional place to even start as a caretaker. This doesn’t mean a caretaker cannot show emotion to their loved one, but it does mean they have to process their emotions with others, and be able overcome the anxiety in the critical moments. I remember one particular rough night when my anxiety was out of control, but I knew I couldn’t take anything to relax me to the point of not being able to make critical medical decisions on her behalf. That is a hard place to be in, but thanks to the tools my mental health team has given me over the years, I was able to manage it. So, the third ingredient in the recipe for the “Perfect Storm” of caregiving, is the emotional ability and mental health stability to do it.

The Intellectual Capacity

When you are the primary caretaker of someone with a terminal illness, and you have zero medical or science background in your repertoire [I am not THAT kind of doctor!], you at least need to have the mental acuity to take all the information in, remember most of it, and understand a significant portion of it. While Google is your friend, it can also be your enemy, so you have to have the critical thinking skills to be able to navigate source evaluation, comparative data, and bias. A caretaker needs to be able to help their loved one formulate hundreds of questions, process what they hear, develop follow-up questions, and be able to extrapolate the information. And that is all before being able to monitor and interpret test results, manage many new often-changing medicines, and keep straight which doctor to call for what symptom. And while on-line medical portals are helpful and digital calendars at our fingertips are lifesavers, a caretaker really does need to be able to keep all the different medical appointments straight in their head. I find it a pure miracle we never missed a doctor’s appointment and never showed up at the wrong doctor on any given day. I am now an “expert” in so many things I never wanted to be or imagined I would be, but I can sincerely offer to anyone the ability to help them navigate the hepatic cancer waters. So, the fourth ingredient in the recipe for the “Perfect Storm” of caregiving, is the intellectual ability to process all of the medical information rapidly coming at you and your loved one, and make sound critical – life and death decisions – every day.

The “Stomach” for it

Caretaking a terminally ill loved one isn’t for the faint of heart. There are bodily fluids and medical procedures that any caretaker will be likely be responsible for or witness to. I learned how to give injections of various sorts, flush and de-access chemo ports, Screenshot 2023-01-11 at 2.01.15 AMgive IV/port fluids, manage bleeding from otherwise minor cuts made significant by blood thinners. And, while protecting the dignity of my mother, it is important to mention the different sicknesses she experienced and often needed help managing. There is no judgement for people who can’t stomach these things – and quite honestly – I didn’t know if I had it in me (I’ve always been the camp leader who said they would deal with blood and broken bones but never loose teeth or puke!), but somehow, I managed my own reactions each and every time I encountered a new medical challenge I had to take care of. So, the fifth ingredient in the recipe for the “Perfect Storm” of caregiving, is the “stomach” for the sometimes nasty and often difficult side of caregiving.

Compassion and Patience

If you managed to get through this checklist so far and think everything is aligned, you have to be honest with yourself – very, very honest. Do you have the compassion and patience to take care of a loved one who is changing every day. Who is sometimes angry, sometimes scared, sometimes sad, sometimes frustrated, sometimes confused (physically as a side effect or emotionally or intellectually), and in the end taking it all out on you? In an episode of dehydration induced confusion, my mom was yelling at me, telling me I was trying to trick her, was convinced I was going to abandon her in an emergency room if I took her there to get help … and through it all, I had to hug her, and hold her hand, and tell her I loved her, and remind her that my number one job is to keep her safe (something we told my nephews often since they were very little). Watching a loved one suffer is brutal, and as hard as it is on you, a caretaker has to remember what the person experiencing it all first-hand is going through. Yes, sometimes the caretaker needs to walk away for a moment (or a few hours, or a weekend!), but in the end, if you are a person whose personality isn’t imbued with compassion and patience, then I don’t recommend serving as a caregiver for a loved one. It is better to admit upfront that this isn’t a part of your genetic makeup, then to create a major rift between you and loved one because it wasn’t something you were built for and tried to do it and couldn’t. This is one time where “fail forward” isn’t an option. So, the sixth ingredient in the recipe for the “Perfect Storm” of caregiving, is a personality with built-in compassion and extreme patience.

Yes

There is not a single person who should be judged if they have all of the above explained traits and still don’t want to take on the role as a primary caregiver for a loved one. You have to want to say “yes” and not be guilted into it or forced into it. It’s that simple. And if you agree to take on the role and at some point it becomes too much or another competing priority is taking precedent, then you have to change your “yes” to a “no” – giving the adjacent family and friends some reasonable time to transition to a new caretaker or a team of caretakers. Again, I would beg anyone to not judge another for either stepping out or for not agreeing to step in from the beginning. So, the final ingredient in the recipe for the “Perfect Storm” of caregiving, is the willingness to say “Yes.”

Reflection

Having all of the ingredients is a gift. I am blessed to have been able to step into this role as primary caretaker and put the rest of my life on hold. I have now transitioned to the role of estate executor/trustee and am responsible for cleaning out my family home of 50 years while resolving all the legal and financial matters that come along with a person’s well-lived life. I am choosing to stay here in St. Louis until the last item is out of the house (with a few much-needed vacations sprinkled in here and there) but I am also very much ready to get back to my career. I love being a Jewish educator and I get so energized when speaking with people about the field in the meta and the practices in the micro. I desperately miss my colleagues across the world and I miss the learners of all ages. (Not to mention some major conference FOMO the last year as the in-person gatherings have begun to emerge.) And as I mentioned before, I am still recovering from that very unfortunate ankle break (violation of the bones, obliteration of the joint, demolishing of the structure), actively engaged in PT, and very, very much the patient now being forced to allow others to serve as caretakers (a huge tribe of them!).


S.O. G.LA.D.

Silver Lining SO GLAD
Optimism

Gratitude
Learning
Achieved/Accomplished
Delighted In

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2 Comments (+add yours?)

  1. Catherine Rosing
    Jan 11, 2023 @ 21:57:50

    Robyn, Thank you for your thoughtful and thought-provoking words. As someone involved with caretaking of my mom, I appreciate your insight. Wishing you r’fua shleima. Catherine

    Reply

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