It’s been a rough two months, and during it all, I’ve been thinking a lot about caregiving and compassion. By that I don’t just mean simply compassion toward others, as important as that is. I mean compassion toward oneself. In reflecting on this, I’ve begun to believe that guilt in a caregiving situation may be an important sign that self-compassion has been lost from the equation. Let me walk you through my thought process.
Our past two months
Our journey of the past two months started when my mother-in-law, who was diagnosed several years ago with Parkinson’s, took a sudden nose dive from fairly independent living to full-on 24-hour care in a single night. Yep, just woke up one morning unable to do a single thing herself.
We’d already begun shopping around for assisted living situations at her request, everyone thinking that move was probably about six to eight months down the road – and then abruptly found ourselves falling without a safety net. We immediately scrambled and pulled together, rearranged our lives and took turns taking time off work to juggle her care, found resources and did our homework, followed up, jumped through hoops, squeezed extra time out of every day – all the things families do when faced with a crisis.
To put it into even greater context, my husband is her only child who lives locally and all this “extra” was on top of full-time work, side jobs, side businesses, side projects, graduate school, parenting, homeownership, life, and impending holiday preparations. In other words, it was nothing if not stressful.
This is not a new story. Life doesn’t wait for a good time to throw us a curve ball.
Recognizing what’s important
My husband and I quickly realized that how we treated one another during this time was crucial. Rule #1: We were in it together. We could deal with anything – together. The one place that had to be safe and loving and understanding was our relationship, our home.
It can be so easy to snap at the people we love. To let generalized stress spill over and splash acid on those who are closest to us. We didn’t want to let that happen.
So we tried to be mindful of this as we made endless phone calls to figure out what exactly was needed, worked with local caregivers to set up schedules, filled in the gaps (i.e., turned our lives upside-down), negotiated the Medicaid system, talked with various agencies, looked for viable long-term solutions, and generally handled all the various details that fall on the in-town kids. After a few weeks, we were forced to realize that our area didn’t offer safe, realistic, at-home alternatives and that we would have to fall back onto a nursing home placement to ensure that she was getting the 24/7 care she now required.
In prioritizing a loving stance through toward each other and our relationship as we navigated this crisis, I quickly recognized an additional stressor that was weighing heavily on my husband: guilt.
For many people, having to contemplate putting a parent in a nursing home can feel like failure (“I’m not doing enough,” “If I were actually a good son/daughter, I’d take care of this all myself”), and this is especially true for an honorable and loving man raised by a single Italian mother who is still in her 60s. Fortunately she agreed with both her sons that as much as we all wanted her to be able to stay in her home, the expense, lack of coverage in our area, safety concerns, and burden on the family were simply too much. But that didn’t make it easy. Parkinson’s is an ugly disease that impacts people both physically and mentally, and no one enjoys the experience.
Concentric circles of compassion
Which brings us back to compassion. Early in the process, I shared with my husband that I pictured our priorities during this stressful time as taking the shape of concentric circles.
At the center was his mother, the person in need of care. For my husband and his brother, who formed the next concentric circle out from her, her needs and wishes and care and happiness took precedence. She was their laser focus. They couldn’t see or take anything else into account.
For someone like me, who would be in the third concentric circle out (I was heavily engaged in her caretaking, but am not her child), I had both my mother-in-law and her sons in sight – in other words, both of those concentric circles. It was clear from my perspective that any truly viable solution had to take everyone’s needs and wishes and sanity into account. From where I stood, they all mattered and required care.
I write fairly often about caregivers, and our tendency to put others first to the point of burnout. This concentric circle concept gave me a way to describe the need for self-care in a way that made deep sense to me, and I hope it does for you as well.
As a caregiver, deep in the trenches, it’s understandable that the only thing that (feels like it) matters is the person you’re caring for. Sometimes it seems imperative to give them a world that’s as “right” for them as possible, no matter the cost to yourself. And to feel guilty when you “fail” to do that.
And yet, one single step back in the concentric circles, I glimpsed a truth: What we were doing was unsustainable. It would break us.
Bringing self-compassion back into the equation
In sharing my thoughts with my husband as he wrestled with his guilt, he asked me to write on this topic for my blog in the hope that it might help another person going through this same difficult and challenging sort of decision and time period. So I share with you my conclusion: We all go into imbalance to fill in temporary gaps during crisis, and that’s perfectly fine – but to create any sort of sustainable long-term solution, the world must look as “right” as possible not only for the person being given care, but for the caregivers involved.
There must be a balance, and sometimes this means making tough decisions that aren’t completely “right” for anyone, but that take everyone’s physical, mental, and emotional health and safety into account. This is not wrong, it is not shameful. It simply is. You, the caregiver, matter. If not to yourself at this moment, then to the people who care for and about you, the people who live in your next circle out, whose mission is to want you to be healthy, and happy, and sane – even when you forget to want this for yourself.