I’ll never forget it as long as I live.
It was November 19, 2021, when I started the first of many treks to Roanoke Virginia. I used to think that a three-hour drive was just too long and my typical daily drive limit, but after so many daily drives back and forth, three hours would pass in the blink of an eye, or so it seemed.
On October 28, my concerned aunt reached out to me expressing my mother’s stubbornness that often came out, especially in matters of health. It seems she had a bad case of fluid that was built up in her lungs which she was refusing to go to the doctor about, and rightfully so, was concerned for her wellbeing. Not that I ever really had much sway over my mother, but I like to think she always trusted my judgement, and if I got on the phone and told her she was being ignorant, she would listen.
I suppose my filling her with common sense worked, because, by November 1, her heart doctor who I got her in to see said they wanted her admitted to Roanoke Hospital for anywhere from 2 to 3 days for observation.
One day, two days, five days passed, and I got the call that no matter how strong you think you are, is never easy to take.
Your mother has CKD Stage 4. Do you understand what that means? Your mother’s kidneys are failing.
Are you kidding me? What on earth is CKD? All I heard was Stage 4 and dying, and I was on the floor. In case you were wondering, yes, I collapsed onto the floor, but only after having a feeling of “sick” just pouring over me with an impulse to want to vomit. Could this possibly be the truth? My mother, who had just recently turned 67, was dying?
In moments of chaos and trauma, I did the only thing I could think to do, which was do what I do best, and attempt to fix it. You see, it is not uncommon at all for me to be the first one that every one calls with that plea of help as they need a “fixer”. Of course, I will not be foolish and say that I could fix or cure what my mother had destroying her body, but I do a pretty damn good job of flipping a switch, diving into disaster recovery mode, and deploying a plan of action, “as if”. In chaotic moments, something happens inside of me that results in a moment of clarity which generally sweeps over me to the point where I can quickly strategize steps and formulate a plan of action to lead me down the path to “fix”.
- STEP 1: I spoke to my mother, comforted her, and let her know that every ounce of energy I had would be put into finding out not only how we ended up here, but also what options existed, and what steps needed carried out.
- STEP 2: Speak to my mom’s care team (the entire care team, including nurses, doctors, general practitioners, and specialists) who know about my mom’s health (current and prior).
- STEP 3: Work with mom’s immediate care team at the hospital to understand what if any treatment options existed and prioritize based on complexity and time commitment necessary before results are to be seen.
- STEP 4: Fight to keep mom in the hospital in her current condition for as long as I could before I’d be forced to begin carrying out the rest of the priority list. In case you were wondering, the #1 priority was keeping her in the hospital as long as possible as it would ensure her safety, was not complex and was as simple as a doctor putting pen to paper to extend her stay.
- STEP 5: Secure her bed and receive physician authorization.
- STEP 6: Ugly cry (I mean serious UGLY cry).
- STEP 7: Gather my thoughts, take a deep breath, and rehearse (rehearsal is key) what I’d say to mom, as a hard conversation was about to ensue.
Gearing up to talk with mom again was hard. I can not even remember how long it took me to mentally prepare myself, and no matter how hard I tried, I was certain I’d get through it. I had no choice. My mother needed me, here was my opportunity to truly prove she could lean on me and know that I would not let her down.
I’m not quite sure what it was over the years, but I’ll be honest and tell you that while I loved my mother dearly, she and I just never got along. Since I was a little girl, I thought I had to prove to her my love and show her constantly how much I cared. Whether it was getting on my hands and knees and scrubbing the floors, keeping the cupboards and fridge clean, doing everyone’s laundry without being asked, always being top of my class at school, and being the best on the field, court, or in the pool when competing.
I never knew how to show my mother love, and despite moving off, repeatedly making the deans list in college, graduating with multiple degrees, becoming a senior executive in finance by my mid 20’s and proving I could be someone for her to be proud of, I never once felt it from my mother.
No matter what I did or how hard I tried, it just never seemed good enough, or maybe, just maybe, it was better than I should have been, or ever even deserved, in her eyes.
Here was my chance, I just knew the time had finally come where she could see me for being who I was, her loving daughter.
- STEP 8: Talk to mom.
It’s a lot harder than it seems to have a conversation with a parent, let alone the woman who helped give you life, that there’s only so much runway remaining in hers.
I’ll never forget the look in mom’s eyes when she turned to me after the doctor left the room. She froze, time for a moment, stood still.
It’s happening, isn’t it? I’m going to die.
Mom
In a moment like this, there is no sugar coating, there is no pat on the back with an “it’ll be okay”, because quite frankly that would be a lie. You see, I’m one of a guilty conscience, so lying is just not in my DNA.
Me being new at all of this and learning everything for the first time, and while she was looking to me for answers as she always did, all I could say was, “We will do the best at what we have to work with, and I promise, we will do it together”.
It’s ironic that I spent so many years attempting to make mom proud, through hard work, degrees, career success, etc., for it to all of a sudden not matter. In a matter of an instant, the only thing that mattered was the needs of my mother.
Okay doc, so what happens next?
He follows….
“Well, the process is simple, the journey is hard”, he says.
I recall scribbling down notes as fast as I could on a small piece of scrap paper that I pulled from mom’s purse and a pen that I just happened to have in my pocket. Okay, I got it…
Phase I: schedule appointment for follow-up and assessment of the feasibility for dialysis therapy
Phase II: measure and place fistula
WAIT! What the heck is a fistula? By now, the doctor had to spit out so many medical terms and jargon that I was overwhelmed to the point I could not make out the words he was speaking, you know when you’re focused so hard on something that you become distracted and all you hear is “whomp whomp whomp wah”, and my eyes glossed over to the point I was unable to read my chicken scratch that I had begun to write.
In case you’re new to this like I was, a fistula or as they referred to it with me an AV Fistula is a direct connection made between an artery (A) and a vein (V) by a vascular specialist. You can learn more about them HERE. Now, typically, and most preferably, you have a connection made in the wrist or forearm, so the doctor continued describing the placement in one of these two preferred locations.
Phase III: Fistula surgery
Imagine my surprise when we showed up for surgery expecting that mom was supposed to get a forearm placement (AV Fistula) and came out with a tube jutting out of her upper chest cavity which I later found out was a CVC or Central Venous Catheter. A CVC in common terms is essentially a catheter that gets placed in the upper arm /chest area, and while not the most preferred, is an alternative placement for dialysis access for individuals who seemingly have small veins or insufficient vein access.
I’ll be honest and admit that this was a much harder ordeal to cope with than most. While I had not seen my mother take much pride in her looks for several decades, all of a sudden, when she had this unexpected tubing jutting out of her upper chest area, she began to seemingly care about aesthetics. It was arguably a short-lived concern, but not something to minimize given she was already in a fragile state. Despite this being a life-saving / life-extension option, I learned pretty quickly that the right thing to say when my mother was wheeled out to me was, “How do you feel about that”? At that moment, she had absolutely every right to feel how she felt, believe what she wanted, and also express anything she felt necessary to assist in coping with her new lifelong “accessory”.
Phase IV: Recovery
This was not as hard as it arguably could have been. Mom was in a bit of discomfort for a few days, but I’ll be honest and admit, that it is times like this that make me proud to be a farmer’s daughter. My mom was always tough as nails, and likely the toughest woman (outside my grandmother) that I ever knew in my lifetime. I remember the day after the placement procedure asking her how she was doing, and her response was no surprise…
Well, I guess I’m doing alright.
Phase V: Hemodialysis
No lie, this was the part I was not at all prepared to accept.
Day 1: Dad drove Mom to the clinic and was met with nurses who indicated he could not stay with her. I’m pretty sure, it was the first time my father had ever been told no. The environment had to stay sterile, he could not sit with her for the 3 hours she was expected to receive a blood transfusion.
Day 3: Mom said it was hard, she didn’t want to go.
Day 6: I took a call from her crying, and she told me that she was lonely and bored. I encouraged her to talk to others around her, as they too were going through a similar battle and they had stories to be shared.
Day 7: Mom progressed from 3 to 4 hours for each treatment.
Day 10: Mom was getting to know people, and while talking with her about her treatment, like I often did, she began to refer to people by name, and felt a sense of “belonging”.
Day 12: Today, she told me that another patient “sprung a leak”. She said that blood went all over the place, and the nurses were scrambling to clean up to not freak everyone else out.
Day 15: A man died.
Day 18: Mom cried, and told me she didn’t want to die. She was scared. She didn’t know why she was there, why was she putting herself through this treatment, if all it was going to do was ultimately end in death. I reminded her of the love she had for her family and her grandchildren and assured her that her fight would be worthwhile.
Day 20: Mom was tired, she didn’t want to go for treatment. She told me she was tired, didn’t want to work any longer.
I’ll be honest and admit that I don’t do, “fake happy” very well. Somewhere, somehow, I had mustered up enough energy in myself to stay strong, to provide words of encouragement, foster positivism, and quite frankly keep the mood light and spirited, but I was done. I have reached the point of all-out, flat-out tired!
The new normal was hard to accept, but as a family, we had accepted what life had become. The holidays were fast approaching, and while I struggled with a trip home, I felt good with where things stood and had made plans to carry out our normal routine in North Carolina and make a return visit home in the spring, at least that is what I had planned.
I soon hit the realization that time does not belong to me. No matter the planning, no matter the good intention put into future road maps, nothing I could ever say, do, or draw out, would ever come to fruition, just as I had envisioned. The path ahead did not belong to me, nor did it ever, which I have now accepted. Our lives are finite, and it is this reality that I started to finally understand.
Credit where it’s due:
Azura Vascular Care. (2023, May 24). Understanding the central venous catheter. https://www.azuravascularcare.com/infodialysisaccess/understanding-central-venous-catheter/
Azura Vascular Care. (2024, July 19). Understanding the arteriovenous fistula. https://www.azuravascularcare.com/infodialysisaccess/arteriovenous-fistula/
Marsh, A. M. (2023a, May 23). Dialysis fistula. StatPearls [Internet]. https://www.ncbi.nlm.nih.gov/books/NBK559085/
Just read every word u wrote! I hope ur info will help others who will go through what u have or who need this type of intervention.
Like a vapor, we come and go. This is beautifully written Nancy, thank you for inviting us on this journey with you.