Everything I learned about Resilience, I learned from PD Caregiving

Warning: this post is personal for me. I’m only sharing it with my subscribers, but you can share it more broadly if you think it will help someone else.

Many people talk a good game about becoming or being resilient. I always wonder if they really understand everything around that idea. I certainly don’t.

My wife has Atypical Parkinson’s Disease with Lewy Bodies Dementia. I was talking to a group of Parkinson’s Disease (PD) caregivers in a support group the other day, and I likened my day to a rollercoaster. Each day. Every day—

• There were ups and downs.

• Twists and turns.

• Moments of joy, laughter, bittersweet memories, and sadness.

• Moments of fear, nausea, and uncertainty.

• Perhaps even the occasional scream.

Nearly all of them saw themselves on the same ride as me.

Here’s a short video that explains Atypical Parkinson’s Disease or Parkinsonism—

https://share.vidyard.com/watch/RGzc8Aok7BKT2pkhda65JZ

which is the journey we’re on…

Every day, I get up and go again.

I try to renew my hope, energy, faith, and focus each morning.

By lunchtime, I’m usually spent—frustrated, exhausted, and depressed.

I try to make it through, getting my wife settled and in bed. Then, my nights are fitful as I wake up multiple times to check on her as she uses the bathroom or roams our home.

Then it begins anew around 5 am the next day.

Clearly, I’m not getting enough sleep.

Working on my resilience

I’ll liken resilience in this case to survival. Survival for me and survival for my wife.

Given that level of impact, I try to—

• Be grateful.

• Remember and celebrate our past

• Get out of the house on errands or preferably in nature.

• Take short breaks to relax and reflect.

• Pray.

I’m still not great at self-care. Guilt is an ongoing emotion for me. Guilt that I’m—

• Not good enough.

• Not doing enough good.

• Getting frustrated and losing my temper.

• Unhappy with the situation.

• Not…better!

The Long Haul

One of the unique things about Parkinson’s, especially Atypical PD, is that it’s the gift that keeps on giving. We’re coming up on three years since our initial diagnosis. The symptoms existed before, but I’ll use three years as our benchmark.

There is no end in sight. Not that I want an end. The disease keeps progressing. Progressing on two fronts, the movement side and the cognitive side, with the latter clearly the more challenging one for me to deal with.

It’s Parkinson’s Dementia (Lewy Bodies) that is changing my wife. Her memory, her personality, introducing delusions, and generally taking her away from me, bit by bit.

The progression's relentlessness weighs heavily on my resilience. It beats it down every day, and I must find a way to build it back up relentlessly.

Some days, I do, and some days, I don’t. But I am in it for the long haul with Diane. We are aging at home, and I’ll be taking care of her until I can no longer and/or until her safety is at risk.

Centering

I try to center throughout the day, telling myself a new story that I am enough, that I’m doing the best I can, and that whatever I do is good enough.

I try to take snippets of time to reflect, center in a quiet space, and breathe.

I try to remind myself that challenges come not from Diane but from Parkinson’s. To not take things personally.

I also try to center on myself and check in to see how I am doing. For example, writing this piece has been cathartic for me. It’s helping me explore my feelings.

Grace

Giving myself grace is a big part of my centering.

Nobody, and I mean nobody, knows what it’s like to be me as a caregiver. They may think they do, and they may judge or think they can do better, but they don’t, and they can’t. Each caregiver is on a unique journey that only they can truly understand and appreciate.

Here’s a story to illustrate my point—

A common story told by caregivers is one where their loved ones act a certain way with them, both cognitively and behaviorally. Then, when visiting the doctor and explaining the challenging behavior, for those 10-15 minutes, their loved ones act “normal, " which undermines their entire story.

This happens all the time, with doctors, other caregivers, family members, and friends.

You explain some of your challenges, and you hear back—Well, I don’t see it. And the hanging challenge is—what is wrong with you? I don’t see the “problems” you’re talking about.

It must be you…

As I beat myself up the other day, I came across an article entitled "10 Common Caregiver Confessions."

It was an excellent find for me because I’ve experienced nearly every confession, and they feed my guilt and self-criticism.

When the article named them, it was like a refreshing breeze for me. It largely normalized what I’ve been going through, which helped slow down the spiral I’ve been on in this area.

Level of Difficulty

I thought I’d built my resilience as an Agile Coach and Senior Leader across many organizations. In fact, I’ve even taught it in my leadership and coaching classes. But I’ll tell you, resilience in these contexts can’t hold a candle to resilience in caregiving.

It’s just so much harder to keep it together when you’re caring for a family member and loved one. It gets even more challenging when they have a chronic disease like PD, and dementia is in play.

As a wrap-up to this piece, I ask for your prayers. To say that I’ve become more spiritual as I’ve gotten older and during my caregiving is an understatement.

Prayer, reflection, silence, mindfulness, and meditation center me.

Take good care and work on your resilience, my friends,

Bob Galen

October 2025

Resilience References

Here are two posts I shared around resilience in professional contexts—

1. https://www.agile-moose.com/blog/2020/7/17/exploring-resilience

2. https://bobgalen.substack.com/p/resiliency-manifesto

And here are two posts by my friend Julee Everett. Julie’s work continues to be an encouragement and reflective space for me—

1. https://www.linkedin.com/pulse/being-resilient-julee-everett-pqxzf/

2. https://www.linkedin.com/pulse/resilience-201-julee-everett-ra0rf/

I’d encourage you to become a fan of Julee’s work.

From Julee Everett’s resilience assessment—

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