CaringBridge

I became aware of CaringBridge years ago when a friend of mine was dying from cancer. He used it to connect with his colleagues, friends, and family during the last few months of his life.

I found it to be priceless in connecting us and letting me know what was happening day-to-day as he battled the disease. It also gave me a chance to respond to his posts and support him as much as I could from afar.

I’ve tried using it with Diane, but to be honest, I lost momentum with my posts. It’s also difficult to post when there isn’t much changing in her world week-to-week.

The Loneliness of Caregiving

I read this article today by Thomas Gartenmann. In it he mentioned that some groups are more vulnerable to loneliness—

Some groups are particularly vulnerable:
- younger employees
- those in transition (like job changes, relocations, or finishing school)
- remote or hybrid workers
- individuals with lower income or education
- anyone lacking meaningful connections at work or outside of it

I want to add caregivers to the list. As I read the post, I realized that (1) I am indeed lonely and getting lonelier along my caregiving path, and (2) that the act of caregiving is inherently lonely. And in this case, I mean caregiving for someone with a chronic illness, whether life-threatening or not.

Why?

Something is SERIOUSLY Wrong with Our Healthcare System

I subscribe to Wendell Potter’s Substack entitled HEALTH CARE Uncovered. Recently, Rachel Madley authored a piece titled "Where Do Our Health Insurance Premiums Go?"

I wanted to share a couple of quotes from the article and let them “sink in” a bit—

As Wendell Potter recently wrote, from 2014 to 2024 the seven largest publicly traded health insurance companies, UnitedHealth Group, CVS/Aetna, Cigna, Elevance (formerly Anthem), Humana, Centene, and Molina, reported that they collectively made more than half a trillion dollars in profits.

That’s money collected from individuals, employers and taxpayers for health coverage — dollars that didn’t go to medical care but instead flowed to corporate shareholders and executive bonuses.

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Senior Care in the United States

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As my wife’s Parkinson’s Disease and PD Dementia worsen, I’ve become more familiar with senior care in our country.

What I find continues to surprise me. In that I thought we were…better.

But we’re not.

I’ve written a personal experience paper that I’d like to share with you, hoping it will help you better understand our situation.

One that we ALL will eventually be facing.

As a follow-up, there is a 3-part documentary produced by Susie Singer Carter about a short care journey with her mother, which is a must-watch on this topic. To me, it’s heartbreaking and alarming. It also nicely illustrates our current “situation” in long-term senior care. It’s entitled—No Country For Old People - A Nursing Home Exposé.

Prepared to be shocked, disappointed, frustrated, horrified, and potentially…fired up!

Everything I learned about Resilience, I learned from PD Caregiving

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…

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Welcome to Caregiving

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I’ve been in a caregiving role for my wife, Diane, for the past few years.

As I’ve navigated this journey, it struck me that many others are navigating the same waters.

So, I’ve decided to share my learnings, challenges, opinions, and insights on caregiving on this blog, in the hope that it will help others navigate the same journey.

It will also be a bit of a soapbox for me to share the challenges we aren’t facing all that well as a nation.

In the end, I want to help some and challenge the status quo of others.

Please share this blog in your networks, communities, and families. As this quote alludes, caregiving is something we all should CARE about—

“There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

– Rosalynn Carter, Institute for Caregiving

https://rosalynncarter.org/

Looking forward to sharing with all of you.

Bob Galen