The Caregiving Conundrum

Finding yourself in the caregiving role as the leader of the village can be a bit overwhelming. For a while, you are in fight or flight, just trying to help your loved one survive. During any health crisis with a family member, I try to remain as objective as I can, using my professional knowledge of medical issues to the best of my understanding and my insight in navigating the hospital system to improve outcomes. But, to use a phrase my kids love, it hits different when the person in crisis is your husband, and you are the primary caregiver, not just playing a supporting role.

Eventually the magnitude of what is happening catches up to you. For me, this was on a run. Did I deserve to run? I don’t know. Did I need to run? Most definitely. And it was a difficult run, just because I had the time and space to process my emotions and experiences over the course of my husband’s illness thus far. I kept having to push down a mild panic attack, and I did shed a few tears during the time spent on my feet. 

I’m a very sensitive person, and sometimes memories attach themselves to songs or smells. For example, I can’t stand that stupid trampoline song that was popular a couple of years ago; I associate it with the unpleasant parts of being a home health practitioner during the height of the song’s popularity. Likewise, I can’t go into a Wawa bathroom without the smell of the air freshener taking me back to that anxious time, either, as it was my go-to safe rest stop. 

The most recent awkward smell? My deodorant. I picked up a new flavor of my favorite deodorant because it happened to be on clearance. I started using it Sunday, the day that my husband was admitted to the hospital. And it occurred to me on my way home from my run, smelling my own deodorant, that I will forever associate this new smell with this time in my life. I may have to chuck it before I’ve used it all. 

I know I need to take care of myself. I’ve given the lecture to many caregivers myself over the years, including my mom and my husband’s mom, as they navigate issues with my dad and my husband’s dad themselves. And yet I still feel guilty taking the time to do the things I need to do to maintain my mental health, including taking the time to run. 

But it’s funny how quickly your own needs go out the window when you are in caregiving mode. For example, Tuesday I ate breakfast at 8:30, before my run. At 3:00, I realized I hadn’t eaten anything else all day. The hospital cafeteria has slim pickings for a vegan. Monday’s lunch was veggie sushi and a hummus/pretzel pack, which was the exact meal that my best friend brought to me as we waited in the ER for a room the day before. Tuesday when I went, the main cafeteria was closed. Only pre-packaged food was available. The thought of a repeat of Sunday’s dinner and yesterday’s lunch made me want to cry. So a Subway sub with all the veggies, no cheese is what I got. It was less than exciting. 

There are some aspects of caregiving that are absolutely gratifying. Besides showing my husband how much I love him through my professional caregiving skills cultivated throughout my career, I am having so much fun telling each and every one of the members of his medical team all of the decisions he has made that have been detrimental to his health and led him to this point. It’s not often that I get to say, “I told you so.” It’s also not often that my husband gets to see how effortlessly I seem to navigate lines (like multiple IV’s, pulse oximeter, and telemetry wires), how well I can coordinate tidying and room and setup for transferring to a recliner or the bed while he’s using the bathroom, etc., or prove to him that there actually is a difference in your cardiopulmonary effort between different types of assistive devices. I am absolutely a colossal pain in his ass right now, but I also may actually be impressing him. 

That gratification aside, the rest has not been as fun. There is a bit of truth to the saying that ignorance is bliss. I know what we have been dealing with and just how close he came to death. But I think we have reached a turning point in his recovery. He actually came home yesterday. Maybe this time, my husband will trust that I do know what I’m talking about when I try to make him pay attention to his body. We shall see. 

For now, there are lots of new things to navigate. We have new toys, including a rolling walker and a knee scooter, both on loan (since he remains limited in weight bearing on his operated foot), a brand new pulse oximeter, and an incentive spirometer, as well as new medications (one of which costs a fortune). My husband will have to learn to slow down to keep his heart rate in a safe range as his body resorbs the clots. We will learn that it’s ok to accept help from friends. And he’s learned a valuable, humbling lesson: he is not invincible. 

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My husband and I are new to navigating a health crisis with each other. This is so much different than helping our parents with issues. I’m so grateful to our friends and family who have reached out to help us during this time. Our healthcare team at the hospital was outstanding. And I’m grateful that my friends who work there stopped in to check on us. Our village is larger than I thought. 

As always, I hope you all are safe and healthy.