Lupus and Caregiving: Setting Boundaries when You're Overwhelmed

By the end of last week, I found myself falling into one of the most common traps of caregiving - I'd caregiven too much. 

Officially, I think it's called caregiver overload, or caregiver stress syndrome. But I like to say that I'd given too much, and it was time to give a little on the giving. (Okay. I'll stop.) 

From what I've read, and given my previous experience taking care of my dad, this happens. You get carried away helping, neglect your own needs, and your physical and mental health suffer 

Thankfully, I realized it juuuust as I was tipping the overwhelmed scale...so I was able to react quickly and change course. 

Caught in the early stages, the fix was simple enough. I needed a break. 

For me, that looks like taking an afternoon off,  cutting a visit short, or calling in backup helpers. Anything that allows me to mentally and physically step away from the role of caregiving. 

So I did just that. I coordinated schedules with my sister, so that my regular evening visit could be covered by her visit, and I could sit back and relax. And the next morning, instead of rushing over directly after I dropped the girls off at school, I stopped at home first. Johnny and I took a brisk walk with our pup, Tia, and then I headed to my mom's. I was renewed, refreshed, and ready to help. 

And while I'm currently doing a pretty good job of maintaining balance, how do I avoid doing this again? 

I remember asking the same question when I was battling active lupus disease. How do I avoid the same mistake of "overdoing"  each time I have symptom reprieve? 

You know how it goes. You're disciplined for a week because your symptoms dictate that you mind your health first. Then you wake up one morning, and you're feeling good - better than yesterday. Then the medicine kicks in, and you're feeling even better. 

So now you see an opportunity to do a little extra - squeeze in lunch with a friend; run an errand after work; suggest you watch a late night show. And before you know it, you've overdone. (Probably could have stopped after "lunch with a friend", but let's not beat ourselves up.) 

So how do we not get there again? How do I care for my mom without overdoing? 

Here are three suggestions I came up with, which I'm going to try immediately: 

1) Set scheduled check-ins: 

Each Friday, I'm going to check in with myself to see how the week went. Did I end up going more than my regular twice a day? Were there emergencies or complications?  Did I help with baths and changing, or were my visits mostly movies and conversation? How many medical professionals did I meet up with? How much coordination was required this week? 

All of these things add up, and tend to dictate how taxing the week was. If it was a whopper, I'll take a break. 

2) Identify disruptions: 

I'm also going to do the opposite. That is, I'll track how much disruption I had in my own schedule. Did I miss a morning walk with Tia every day? Did I reschedule any of my own appointments? Did I pass up on social opps, or have to postpone work or move deadlines? 

These disruptions play a role in my own health and wellness, and if I'm not taking care of myself, I'm not going to be able to show up for my mom. 

3) Pre-schedule breaks: 

 I'm going try to schedule in breaks periodically. For instance, on Wednesday, I'll take a morning walk first before heading over; on Thursday, I'll prioritize a work project; on Friday, I'll be sure to eat with my family. 

I don't think it will be quite so scripted, but I'll let you know how it goes. Being aware is the first step!  


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