Lessons learned, finding strength & sharing inspiration

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Personal experiences can shape our perspectives and viewpoints.

I believe most of us would agree that is the case with many aspects of our lives, including our perceptions of what family caregiving looks and feels like.

Despite my personal desire to share information and stories in order to help our Keeping it REAL Caregiving tribe navigate this reality, I have been guilty of having tunnel-vision when it comes to the issue.

Because I cared for my mother for so many years, my brain instinctively focuses on “elders” when I hear ‘family caregiving.’

But that vision is short-sighted. Because as a friend and colleague experienced (and shared), it can also mean caring for your spouse — the person you are raising a family with — the person you planned to grow old with.

Spousal Caregiving

Some of the challenges may be similar to those of us caring for an elder. But the situation is worlds apart, because your person is not a parent or other relative… it is your wife or husband; your life partner and best friend.

The woman you will meet in this Keeping it REAL Caregiving update is a wife, a mother of two children, and now also a widow.

Jen Stewart/Spousal Caregiver

Jen Stewart last August lost her husband Tom after a battle with cancer. He was just 53-years old.

Jen was kind enough to talk about her experiences and share insight with others who may be moving through something similar.

Jen & Tom Stewart/South Florida

I have known Jen for years and we have worked together on a number of projects. I can tell you, she is one of the kindest, most sincere, caring and compassionate individuals you will ever encounter.

My deepest condolences to Jen and her family and also my heartfelt thanks for the willingness to share an extremely personal and painful experience with all of us

Here is just part of my chat with Jen Stewart. Be sure to watch our full interview -you will probably shed some tears but you will also learn and be inspired by the hope, the strength and the love of the Stewart family.

Q: Tell me a little bit about your experience.

A: This was something that really hit us out of the blue. Before he was diagnosed with cancer and started suffering from the disease, he was the healthiest person. He was my best friend, my partner…he had just turned 50 and was on this quest to be the healthiest he had ever been at 50.

He was my fitness partner, my parenting partner and then all of a sudden my partner needed help. It was a situation where you saw the disease quickly taking things away from him, where he was starting to lose who he used to be.

It was challenging because it was caregiving, but you are also losing your best friend and watching that happen before your eyes. It was difficult, but you also had to be that support system and that strong person for him and for the kids.

Q: Where did you turn and how did you make sense of this in your mind?

A: We were very fortunate that we are surrounded by an amazing group of people who just stepped in and did things that we didn’t even know we needed at the time.

We had people that would stay with him when I had to leave the house. I just didn’t even realize what we needed. It was just like everybody seemed to be two steps ahead of us.

Q: How critical was it that you stayed focused and plan ahead?

A: It was such a delicate balance, because you did have to plan ahead but when you are going through any terminal disease or any serious illness, you don’t know what tomorrow brings. You can plan as much as you want but the treatment is going to change or it might not work tomorrow.

And you want to stay in the moment and enjoy the person for who they are, because he was slowly slipping away from who he was.

A term that we used and I learned during this time was, anticipatory grief. I started grieving him before he was even gone. The moment we got the diagnosis and our lives flashed before my eyes… there was a whole grieving period before he was even gone in August.

Q: Is there anything that really stands out as you were approaching the time of knowing the time with your husband was coming to a close?

A: So, Tom would say, I’m not afraid of dying, I’m afraid of not living. And so, we did what we could to make sure he enjoyed life. He LOVED Karaoke…we continued the Karaoke parties; if we went to an event (pre-Covid) he was out on the dance floor.

Tom Stewart Karaoke/ Courtesy: Jen Stewart

It didn’t matter that he was in a wheelchair and could only move one arm. We brought him on the dance floor… he was just pumping his right arm and just having a good old time! It was just a matter of ‘let him enjoy what he could.’ To see him laugh would make you laugh…we just tried to let him enjoy each day.

Jen’s reading recommendations

KIRC family, I am not lying to you when I say I began crying as I reviewed this interview and looking at all of the photos of such a loving family.

As so many people say – CANCER SUCKS.

Jen shared the title of a book she said was super helpful to her moving through her loss and the grieving process.

“It’s Okay That You’re Not Okay” by Megan Devine

I hope that for any caregivers in a similar situation, you find Jen’s story helpful or inspiring, and you hear some words of guidance and encouragement to help you move through a difficult time.

Julia

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*Header Image: Courtesy/Getty Images/Serhii Mazur*

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