http://www.thenegativespace.life/

The Negative Space, Saint Paul, MN (2025)

08/19/2025

When we know that someone in our life is struggling, it can feel like there's nothing we can do to make things better for them. But in fact, small gestures can make a world of difference in helping them know that they are not alone and not forgotten.

Check out these four simple examples from my own community of support, including:

1. Offering to go to the store
2. Letting them know you're thinking about them
3. Offering to drop off food
4. Offering a hug/your presence

Caregivers: Do these resonate? Would you find these supportive? Any you would add?

Supporters: Which of these can you do this week for someone in your life??

08/18/2025

Have you heard us talk about our newest offering, The Storyline, but still aren't quite sure what it is?

Take a moment with our Executive Director and current caregiver, Allison, to learn more about what The Storyline is and how it can support you and the caregivers in your life.

https://www.youtube.com/watch?v=yHqwMVqjdt8

https://www.thenegativespace.life/storyline/storyline-home/

08/16/2025

Sent this update to the doc who suggested I take Sean to the hospital this week. I love that her response included "And definitely yay Allison." 😁 (Click on photo to see her reply)

Sean has turned a positive corner the last few days. There's more life and spark back in him, which makes my heart so happy. He's getting more fluids this week, which will also help. Not totally done holding my breath, but getting closer.

At the eye doctor yesterday, the tech said, "Have you had a good summer?" 🥺 "It's had its ups and downs," was my response. Hoping these final weeks can add some more ups to the list or at least no downs!!

08/15/2025

People usually think of self-care as spa days and vacations, but a huge component is one that caregivers often skip: our own medical appointments.

I spent this morning getting an eye exam FOR MYSELF (hence the huge pupils and 😎). I've taken multiple family members to multiple appointments this week, but this one was for me and you know what? I hated it.

I totally understand why research shows that caregivers aren't good about getting their own routine check ups and screenings. A few thoughts/reactions I had while at the eye doctor:

- the last place I want to be on a day when I'm not taking Sean to the doctor is AT THE DOCTOR

- they can't find something wrong with me because I don't have the bandwidth for One More Thing

- my date of birth? Hmmm...I can tell you his!

- these drops are going to make me out of commission for a few hours? I can't be out of commission!

- a follow up appointment next week if the contacts aren't quite right? Don't you know what it took to get me here today???

Appointments like these are vital and we should all do them. And. Tell me I'm not alone in having these thoughts?

Also, how could health systems support caregivers with this? When I turned 45, my insurance company automatically sent me a colon cancer screening kit that I could do from home! 🙌

I also have dreams of mobile screening coming to infusion centers for the caregivers. Other ideas??

08/13/2025

In the aftermath of two surgeries, sepsis, and two hospitalizations in five weeks, Sean continues to experience fatigue, weakness, dizziness, and shortness of breath with exertion. I've been checking in with his nephrologist, and when I texted her an update from the infusion center yesterday while he was getting fluids, she called me on the phone to say she thought I should bring him to the hospital.

Years ago, I would have listened to this medical professional without hesitation or questioning. But fourteen years into caregiving, I know both the system and my husband well enough to do both. I know what a visit to the ER would look like, the tests they would run, the toll the hospitalization would take. I know enough about his current labs and symptoms to know that aside from fluids, there isn't much that can be done aside from rest.

And so I pushed back. I asked questions, told her my thoughts, said we would see how he felt after the fluids. Today he is feeling a few ounces better and I feel confident we made the right decision. I will continue to monitor his symptoms, take his vitals, and will absolutely take him in if that feels warranted, but at this moment my years of experience tell me that a trip to the hospital would do more harm than good.

I am so grateful that I have the knowledge and advocacy skills to navigate this AND ALSO can we just stop and acknowledge that we caregivers are in situations like this every single day, carrying the extreme literal life or death weight of moments like this? It's SO MUCH. Caregivers out there making hard decisions and advocating for your loved ones: I see you! ❤

08/13/2025

Join us for a free virtual support group for caregivers of all kinds!

On Tuesday, August 19, we will meet on Zoom from 6-7:15pm CT to discuss the pros and cons of having pets while caregiving, the topic of the most recent episode of the "In Sickness" podcast. Listening to the episode is not a prerequisite.

Questions about what our support groups are like? Feel free to reach out!!

Join us for the group by registering here: https://thenegativespace.charityproud.org/EventRegistration/Index/24587

Hope to see you there!

08/12/2025

EPISODE 114: The Pros and Cons of Having Pets While Caregiving

Justin and Allison both care not only for their spouses, but also the pets in their homes. In this episode, they talk about the process of deciding to add pets to their families and the ups and downs they’ve experienced since, specifically related to their caregiving role.

How have pets in your home impacted your caregiving life? Share with us in the comments!

Listen, share, and join us for a virtual support group on this topic on Tuesday, August 19, from 6-7:15pm CT. Support groups are free and caregivers of all kinds are welcome!

Listen here: www.insickness.care
Register for support group here: https://thenegativespace.charityproud.org/EventRegistration/Index/24587

08/11/2025

Say the hard thing. Ask for what you need.

This is a text exchange I had with a dear person in my life a few weeks ago. In the end, I felt incredibly proud of the way we both handled things and so decided (with permission) to share. Saying the hard thing and/or asking for what you need does not always go as well as it did in this moment, but it's worth a try. As you know, we have had multiple hard moments in the weeks since these texts and the person has been there for me beautifully and again thanked me for my honesty.

Do you have a hard thing you want to say or something you want to ask for? What's holding you back? What might happen if you say it? What might happen if you don't?

08/09/2025

Meet Julie:
❤ Caregiver for her husband living with anoxic brain injury, myoclonus, & tongue cancer
❤ Our 13th story

"I live on Oahu, HI, & have been married to my husband for 37 years. He was vibrant once—working 2 full-time jobs as a mechanic, raising Siberian huskies for show with me & activities with our kids on weekends, living life fully. I've been his caregiver since March 2015. It started with cardiac arrest at home. 10% survival rate. He beat those odds, but came out with anoxic brain injury & myoclonus. As he learned to walk & eat again, Stevens-Johnson Syndrome ravaged 98% of his body, a skin disease. He spent 5 months in the burn unit. 27 of those days were in an induced coma, wrapped like a mummy in ICU. I prayed. Family & friends prayed. I asked God to make the decision for me. The next day, he opened his eyes.

The fight was beginning.

He had to learn everything again, as well as living with excruciating pain. 10 years later, he still has sores. The survival rate was almost 0—I still haven't found anyone else who survived it.I was trained in the hospital to be his caregiver should he be able to come home that summer, praise God he did. In 2018, he was diagnosed with squamous carcinoma of the tongue. Surgery. In 2022, it returned—more surgery. In May 2024, he fell & broke his hip. Partial replacement. Now, he uses a walker.

This April, I researched & signed him up for hospice. It’s not what you think! We get weekly nurse visits, supplies, & chaplain support, so he can enjoy the time he still has with us. The anoxic brain injury took so much of his memory. The myoclonus makes his body shake in mini seizures.

As his caregiver & wife, I've learned to read the signs, the mood swings, the limits. Each day is like a box of chocolates—I never know what we're going to get.

With everything that's happened, I had to stop working. He needs me home now. His walking & shaking has gotten worse, possibly from medication & also because he is aging & weaker. I honestly haven't found anyone whose partner has gone through so much. I always say my husband is a rainbow because God is watching over us & His love & light shines brighter than our circumstances."

08/08/2025

Getting IV fluids this week and next to see if that helps with the extreme fatigue and lightheadedness.

To get this appointment, I had to call each infusion center individually, to inquire about openings. After four unsuccessful calls, the FIFTH nurse I talked to said, "Hang on. Let me do something for you." She sent messages to her counterparts at all of the infusion centers and called me back in ten minutes with an appointment location and time. I got her name and told her she gets allll the gold stars! ✨

It's tasks like this that caregivers spend so much time and energy on ( ) that people rarely see or acknowledge. And think of all the caregivers who don't have flexible jobs who are trying to make all these phone calls during work hours and/or while caregiving.

Caregivers: what are the unseen time sucking tasks in your life?

Supporters: a kind offer would be to ask the caregivers in your life if there are tasks like this you can help with or to at least thank them for all the time and energy they spend on tasks like these.

08/04/2025

We are a small but mighty organization that would not exist without our volunteers. As our name recognition grows, we find ourself being invited to table at more and more events, which is great but beyond the capacity of our tiny staff. Cue the volunteers!

In just the last week, The Negative Space was present at the American Cancer Society Richard M. Schulze Family Hope Lodge Minneapolis EMPOWER Event thanks to my incredible mom, Barbara Resch, and at the event (on a VERY hot night) thanks to our Board Vice President, Lissa Martinez Huebner. Materials for both events were organized and delivered by our super volunteer, Barb Demlow. Please join us in thanking them for supporting caregivers and our mission in this way!

If you live in the Twin Cities area and would be interested in representing The Negative Space at events, please let us know!

08/01/2025

What a gift it was to talk with Meghan of Harvest Health and Wellbeing about the reality of caregiver burnout. The questions she asked gave me pause and got me thinking and the gentle nature of her very being was a balm to my own burned out soul. I invite you to listen in at the link below, watch the video of it at the youtube link, or listen wherever you find your podcasts.

www.hhwellb.com/podcast
https://youtu.be/vHGaQmAfPdA

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