Over and Over Again
There are things no one really explains about caregiving.
People talk about resilience. They talk about strength. They talk about having a system in place.
💡Dr. George Bonanno’s research on resilience emphasizes flexibility and adapting to new circumstances, rather than adhering to a rigid system.
Linda Graham, MFT, encourages journaling to process events, leading to understanding of how to grow in the post-traumatic period.
University of Michigan research suggests combining familiar, stable, and routine responses with new, innovative, and adaptive strategies.
And other research shows that planning in advance - taking a proactive approach to potential traumas - helps build resilience, rather than just reacting to events as they occur.
What they don’t talk about is the repetition.
How the same moment can happen again and again, until it no longer feels like a moment—but a way of life.
Lee would ask the same question. And I would answer it.
A few minutes later, he would ask again. And I would answer again.
At first, I tried to explain. To add more detail, more context—thinking maybe this time it would land.
Eventually, I understood. It wasn’t going to land.
So I stopped trying to move him forward, and instead learned to stay where he was.
There were other moments.
Standing in the kitchen, watching him hold a fork—turning it slightly, as if it were something unfamiliar. Looking at a toothbrush like it belonged to someone else’s life.
And I would step in, gently, quietly, without making it bigger than it already was.
You learn how to do that. How to smooth the edges of a moment so it doesn’t turn into fear.
You learn how much of life is actually made up of these very small things.
Caregiving Doesn’t Move in a Straight Line
In the beginning, I thought I needed a better system. More structure. More information. More control.
I read everything I could find. I tried to map what was happening to stages, to timelines, to something that would make it feel predictable.
But Alzheimer’s doesn’t move in a straight line. And neither does caregiving.
What worked one day could fail the next. What calmed him yesterday might agitate him today.
So the system became something else. Less about control and more about adjustment.
💡Several adaptive models suggest a system for moving with your loved one in the ALZ journey:
Flexibility - understand that your relationship with your spouse will change. I quickly moved from being Lee’s wife to “his buddy”, to provider of all needs, to payer of the bills.
Recognizing the 4 phases - caregiving changes over time. Getting a formal diagnosis of Lee’s Alzheimer’s Dementia wasn’t exactly welcomed, but it did provide a clinical description and led to medication (that provided some help) and access to resources. After that, I was on my own to adapt to his changing cognitive abilities and needs and explore how best to support him. I desperately needed support and assistance to understand the changes. I read every publication I could find on the stages of ALZ, and tried to apply them to Lee’s behaviors and mental state.
Education - Each patient’s journey is unique, but there are some common pathways. Ultimately, my best resource was Lee’s final caregiver - a kind, compassionate, incredibly smart and loving person who approached his care for Lee in a respectful and dignified manner. He understood that Lee’s world needed to be very small and routinized, and that any small change could frighten and over-stimulate him. I don’t know that I could have done this - my heart was fried, I was exhausted and out of ideas - but “K” took Lee into his home and his heart and was there until the end.
“Walking with, not ahead” - always remember this is your spouse, your life’s partner, the love of your life. As much as you’ve lost, find the micro-moments of joy, love and laughter. It won’t be what it was, but with Lee I cherished it even more knowing these moments were fleeting and then gone.
Near the end, Lee’s world became very small.
Routine mattered. Familiarity mattered. Even the slightest disruption could overwhelm him.
By then, I was tired in a way that’s hard to explain—physically, emotionally, mentally.
And then someone stepped in who understood how to meet him exactly where he was. He understood that Lee’s world needed to be very small and routinized. He met Lee where he was, each day. Not where anyone wished he could return to. But where he was.
There was a quiet dignity in that kind of care. A steadiness I’m not sure I had left in me. And I’m grateful for it.
When I look back now, I don’t think about resilience the way I used to:
It wasn’t about pushing through or holding everything together perfectly.
It was about continuing: answering the question again, softening the moment again.
Showing up again.
Over and over again.
At The End of the Day…
No matter the “system” or “framework”, at the end of the day it rests on our shoulders - The Silent Warriors - to walk this journey with our loved ones. There is no one else.
If you’re in it now, you may not even realize what you’re carrying. It becomes so normal, so routine, that you stop noticing the weight of it. But it’s there.
And if you’re on the other side of it, like I am now, you start to see it differently. Not just what it took from you—but what it required of you. I view that season through a different lens now, able to recognize the lessons and truths I learned about myself.
There’s a kind of strength in that. A quiet one. Not loud. Not visible. Not something most people ever see.
Take a step back, acknowledge your pain, your love and the wonderful work you’re doing.
If this would be of value to you to hear more about how I restored my sense of belonging after 4 years of caregiving, Subscribe to Vicki’s Newsletter, “The Tender Warrior.”
One of the best ways to assist in maintaining your resiliency is selecting a caregiver for your loved one. It helps create routines and frees you to focus on the long term. Receive the free download 7 Things to Look For in Choosing a Caregiver as my gift to you when you join my Substack mailing list. Get new articles straight to your inbox and never miss a post!
I write about ways to belong to yourself again in my weekly newsletter “The Tender Warrior.” Because— I truly had to be a warrior most days, but for the man who was the absolute love of my life.