Caregiving

Caregiving New Years Resolutions

I’m not huge on News Year resolutions in general, but I was sent a AgingCare newsletter lately with two articles I thought I’d share related to resetting our caregiver thinking at the New Year. I’m also sharing a third from the being patient newsletter I just received. I hope you find value in one or all three.

The first is titled—A New Year Calls for a New Attitude Toward Caregiving.

Here’s a quote from it—

If you haven’t been making yourself a priority over the last year, you’re not alone. Most caregivers face countless mental, financial and logistical hurdles when it comes to participating in self-care. But, the new year is upon us, which is the perfect time for taking inventory of our lives, pinpointing some changes we want to make and adjusting our attitudes to help us see these things through.

Respite From and With

Finding respite is something I’ve struggled with. It’s often mentioned in my PD support groups, but finding an organization that provides the service has been a challenge. And the few long-term care facilities that advertise it as a service usually have minimum stays ranging from 2 to 4 weeks. Which is WAY too long for my needs and for Diane.

So, I was intrigued when I saw this post on LinkedIn introducing the notion of respite from and with.

I’ve been focusing on the from-side of respite, and this post made me realize that respite with is something I could be working on more.

And I’m certainly going to try out ZinniaTV to see what it offers and how it works with Diane and me.

At the same time, we’re trying to spend more time together watching shows that we used to like. Next up for us is catching up with Heartland episodes. I’ll let you know how that goes a bit later…

Reclaiming Your Identity and Redefining Your Purpose

The email below inspired me to reexamine the impact caregiving has had on, well, me.

I know that’s not the primary lens for any caregiver, but I’ve learned that it’s an important one.

Why?

Because in the act of caregiving, you can lose yourself. You can lose your identity and purpose. And no, they are not solely to be caregivers. You need more than that to have a balanced life and to be an effective caregiver.

Here are some of the challenges and discoveries you’ll face—

The Caregiver Manifesto

My wife has Atypical Parkinson’s Disease with PD/Lewy Bodies dementia. She was diagnosed three years ago, and the progression (movement-side and cognitive-side) has been much faster than typical PD.

Because of Michael J. Fox and his transparency about Parkinson’s, most folks think they understand what my wife and I are going through, but they don’t because of the variety and complexity of the disease.

The reality is that everyone has their own “version” of the disease. So, when folks tell me they understand and/or know what I’m going through OR try to tell me how to fix it, I think to myself that they are well-intentioned, but they—

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?