A Poignant Focus on the Heart of One Receiving Care

At 46, Jenn has a unique perspective on caregiver stress.

She is the one receiving care.

Only a few years ago, she rose before dawn and slipped into the frigid Manitoba winter to run, training for one of the many marathons in which she competed. She’d started to take classes to put her in a position to help with the family’s finances. A busy mother of four, wife to David and a writer, her life was full. Crazy, but full of blessings. And just plain full.

Then odd symptoms began which seemed to take forever to diagnose, probably in part because of her young age. Jenn has a particularly fast-moving form of Parkinson’s which affects every part of her life and turned her world upside down. 

Today, two of the four have moved into the world to find their way and the two younger boys are in high school. David works full time and is a caregiver at night. And Jenn, despite freezing and falls and multiple challenges, is mom and wife and brings incredible wisdom and insight to those of us watching from afar.

In a recent Facebook post, Jenn opened her heart:

Recently, I shared a series of beautiful photos of David and the boys, camping with my brother, sister-in-law, and their daughter. Jess and Toby had gone the weekend previously. They show a family having a truly amazing time, with in-the-moment big smiles, and a blessed relaxation. This was indeed a gift to my family on behalf of my brother’s family, who shared their cottage, food, equipment, time, and love. The impetus for the holiday was to wash my dear ones in respite, who live with Parkinson’s every day. For any caregiver to give loving care, they must first do so to themselves – fill their own wells.

A long time ago I learned that doing what is right is often not easy. It can be all kinds of hard, and so it was as this came into fruition. Simple thoughts such as, “They all need a break from me,” and, “They are so much happier when I’m not there,” whispered to my spirit, as I watched their excitement build. Only God could carry me through.

And then came the memories… Young and newly in love, our first canoeing, a camping trip to a wee island in the Whiteshell – just the two of us and a small, green tent – that leaked. (Which did nothing to dampen our spirits. A two week portage in Quetico, the following year, where both our individual and mutual strengths were put to the test as we explored together. And then there was Rushing River, our family place, with the rapids, the wild blueberries in our oatmeal, and jumping off the big rock, into the dark water, the abyss. It was deep, and icy cold – terrifying, thrilling, and fun!

And now? Was I facing another closed door? My heart is heavy with dreams unravelled. David had reassured me, we would go on many adventures, including camping – just differently than before. This being the asterisk of Parkinson’s – ever-present. I looked about our truck, my brother following behind. We were almost at my parent’s house – my home for the next four days. I looked at my boys, and David – beaming, all. (‘It’s because they’ll be without you,’ comes the insidious whisper.). But that whisper is no match for my resolve. These loves have a need, and I am grateful to honour it.

I want to say, “Go, play!” Instead, I speak to my youngest, “You have Double Stuff Oreos for snacks, will you save me one?” “No,” says my boy. I smile, not because I am not sad, but because I have joy.

We pull into my parents’ driveway. My parents are at the door, waving. We will have adventures of our own…

What can we learn from Jenn’s wisdom?

Embrace the suckitude

Michael. J. Fox, who has suffered from Parkinson’s since he was 29, coined the phrase “suckitude” and I love it. To deny that the situation sucks would be living in denial. Jenn doesn’t deny the pain, she embraces it. Looking at it from all sides, she sees a beauty she didn’t notice before. She also acknowledges the incredible suffering, both physical and emotional. Here are Michael’s words, “Yeah, well, I mean as happy-go-lucky as I seem to be and as at-ease with this as I seem to be, I mean, it sucks!” Fox tells Pauley. “I hate it. And I wish I wasn’t in this situation, but it’s been one of the great gifts of my life that I’ve been in the position to take my view of the suckitude of it and merge it with other people’s view of the suckitude of it and try to find an answer.” (1) Recognize the suckitude, then move on.

Don’t assume boundaries

Those of us who aren’t sure might assume “you can’t.” But there may be days when she can, and should and must. Only Jenn can make those decisions. From another post, she writes, “I was hearing, “‘You can’t do this!’, from some – about so many things. Things I had not even tried doing under my current reality. Life was meant to be lived! The best way to model this to them is to start with, “I will try,” and end with, “I can!!”

To those of you who are connected to a person with any sort of disability, and you know they are merely alternatively-abled, thank you so much for contributing to the space that will allow such empowerment.

Jenn went on to help paint a deck on the day this post was written, and have a blast.

Remember their purpose

Jenn is still a mom and wife, and although those roles may look a little different in their family, don’t they look different in all our families? She still has a caring heart and insights which can have tears rolling down your cheeks with laughter one minute and find you pondering deep thoughts with her the next. She has purpose and God has many plans to use her.

This is also the case for your loved one. Even with dementia, they have a purpose and an important place in their family. Remind them of that.

Care goes both ways

I am Jenn’s aunt, and that remains an incredible privilege. As the years passed, we feel much more like peers, and I’m so thankful to have her in my life. I learn from her all the time. She cares for me through her prayers and her love.

Let your loved one know the ways in which they care for you. Tell them, write a letter, make sure they know the important place they hold in your life.

They are a gift.

(1) https://etcanada.com/news/266969/michael-j-fox-opens-up-about-parkinsons-battle-and-more-in-cbs-sunday-morning-preview-it-sucks/

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