I recently shared an article on Facebook about how caregivers aren't superheroes. It asserts that "superhero" isn't a good enough descriptor for a caregiver.
My aunt commented her agreement, and that she doesn't know how I do it.
I am so very appreciative to know that others think I'm doing a good job. Validation, you know?
But then I got to thinking about how to respond.
How do I stand by and watch as my husband's health deteriorates and he becomes a ghost of his former self?
How do I tend to his every need, including helping him dress and bathe, managing his appointments and medications, testing his blood sugar and operating his insulin pump...fetching, listening, consoling, and encouraging?
All while also still raising our children and trying my damndest not to let mothering fall by the wayside, nor taking care of my own needs because there isn't anyone else to.
The answer, first, is Love, Compassion, and Respect. Second, Patience, Forgiveness, and Priorities.
I Love Mark. I love him so deeply and completely that I can't imagine not being here for him. Not sharing this journey with him. And not just because I vowed to.
My heart is full of Compassion. So full, it aches. I feel for what my husband is going through. I am greatly affected by it. I try to treat him as I would want to be treated if I were in his shoes. I'm not perfect by any means, but I try.
I have Respect for Mark as a fellow human. I respect his life and what he's brought to those around him. There isn't anyone who can help but respect how hard he fights. I respect that even as he struggles, he is still a person who deserves my (and your) love, compassion and respect.
I wasn't always a very patient person. Having children has helped, coupled with a lot of Patience needed while sitting in hospitals and doctor's offices, waiting on test results and answers, or for Mark to feel better. Patience is also needed when Mark is being stubborn about trying to do something himself, or when he is cranky and picking on everything.
I practice a lot of Forgiveness. Both towards Mark when he's being kind of an ass, and towards myself when I lose my cool a little. Or for the days in which I don't tick much off my to-do list because I was derailed in some way. Or because I haven't gone for a walk in I can't remember how long. Or I didn't make dinner.
Learning what my Priorities are is huge. First and foremost, is spending time with my family. I try to be present for each of them when it's obvious they would like that from me. I know when Mark keeps talking as I'm walking away, that maybe he'd like it if I stayed and chatted with him. I know when my son comes looking for me and asks what I'm doing that maybe he'd like me to do something with him. If my teenage daughter comes to talk to me, you better believe I'm gonna stop whatever else I'm doing to listen. Even if any of that means I'm frustrated by what I'm not doing in that moment. They matter more. And honestly, I am damn lucky to be able to.
Prioritizing tasks is a key life skill for anyone, and so it is for a caregiver too. I have never admitted this publicly, but I decided about a year and a half ago that deep cleaning my house wasn't something I got to enough, but that it was important for Mark's health, so I have been having housekeepers do that for me once a month. It takes a bite out of our already tight budget, but it's worth it. That's another thing I forgive myself for.
Yesterday was kind of crazy. Schools were closed in the aftermath of a big rain and wind storm here in Washington (power outages and debris all over the roads). Mark came home from dialysis and informed me that he needed to get a chest x-ray, and we were out of coffee and milk.
Obviously the priority there was Mark's chest x-ray. Secondly, a run to the grocery store. The kids were pretty content taking turns playing video games, even if I still hate when I have to leave them home alone.
When Mark's paid caregiver arrived, we immediately took Mark to the nearest walk-in clinic, brought him home, and then hit the grocery store and the pharmacy. Once home, I checked on Mark, nagging him about taking his new meds, while Camryn put the groceries away. She and I whipped up chicken quesadillas with guacamole for dinner, after which I bugged Mark more about the new meds, bringing him some Ritz crackers and a 7-Up to put on his stomach first. He worked on that while I cleaned up dinner, he took meds and laid back down, and I hung out with the kids watching Supernatural.
Later, I took Mark his usual pills, checked his blood sugar, and made the kids go to bed, leaving me alone to watch an episode of Jane the Virgin on Netflix (don't judge) and have a bowl of ice cream.
Mixed in with all of that I was very quiet the whole time I was with the paid caregiver (hoping she understands how much I have on my mind) and I could have broken down and cried at any given moment. I could do that every day of my life if I let myself. I am 50% happy and 50% sad these days. I think that I probably will be for a very long time.
But for the most part, juggling Love, Compassion, Respect, Patience, Forgiveness and Priorities is how I do it. And Gratitude. Can't forget that.
It's a process, but I am doing it.