Do you Know about Caregiver Burnout?
Have you heard of caregiver fatigue or caregiver burnout? As parents, we probably all experience it to some degree, but when we are parenting a child with chronic pain it can happen more frequently and more intensely. We would do anything to help our child get better. We feel so deeply for them and the whole household can be affected by how your one child is doing each day. Sadness is a pretty common emotion for us parents of kids with chronic pain. But sometimes it can turn to apathy. I am a pretty patient, nurturing person. However, when our daughter Greta was doing very poorly, for months and eventually years, I would have my moments. Every once in a while I would snap. Like I would walk into her room each morning, kind and patient, and then one morning out of the blue I would walk in like a drill sergeant. All of a sudden I was sick of it all and my expectations soared. “Pick your clothes up. You shouldn’t still be in bed! What is your plan for today?” It was kind of like all the nurture had drained out of me and the tank was empty. It was hard on me AND on Greta. It would make her nervous system flare. Which made her pain flare. OR sometimes I just couldn’t muster up the energy to care if she was working on her goals. If she was in pain and putting up a fuss then I would just give in, wondering if it was making a difference anyhow. Burnout can happen when we don’t have the help we need or if we try to do more than we are able to. It is deep overwhelm and exhaustion. You might even feel like you have no more care left in you to give. Or like you just want to run away. The amount we care, grieve, and yearn for our kids is actually unsustainable. It can turn us into a hollow shell. So what do you do about it? 1. Tighten up your boundaries – if I snap, it usually means I didn’t draw a boundary when I needed to. If I feel depleted and all used up, it also indicates I didn’t draw a boundary when I needed to. But how do we know what our boundaries are? Here are some of mine… I want to be in bed by 10. I don’t like having too many things on my schedule for a day (including medical appointments). I need a little time to myself each day. I need at least one of my living spaces to be clean and tidy (living room, bedroom, kitchen). Sometimes we don’t realize a boundary until it is crossed.
2. Take charge of making some progress – you can grow apathetic more quickly if there is no hope that things will change. We might not be able to change the pain but we can usually help our child to become a little more functional, or stay a little more hydrated, or stretch a bit. Or maybe we can help them to better pace themselves. If we are making slow, steady progress (no matter how small it is), it can help to put your mind at ease knowing that there is some small change happening. And if you can’t make progress with your child right now, maybe you can for yourself. Drinking a little more water, giving yourself 5 min to journal each day, eating a carrot each day... The key is small, consistent goals that build. Doing a one-off thing here and there is good, and might be considered self-care, but it doesn't build the confidence that things are changing.
3. Put yourself on the to-do list – this can be one of the hardest things for us as parents, especially when our child needs us 24/7. We know it is important but it seems impossible. This is where you can also start as small as is manageable. Put lotion on your hands once a day. Walk for 5 minutes up and down the driveway. Call a friend, book an appointment with a counsellor, learn how to crochet…
4. Notice the little successes – I have to tell myself many times throughout the day that I am doing a good job. And it actually really helps. I chose to drink water! I picked that thing up off the floor! I cut up vegetables for myself! I didn’t dwell on that thought! I remembered to make that phone call! I remembered to take my medicine! I need to be Greta’s cheerleader (until she starts to do it) and I need to be my own. It can take a lot of effort to do the little things when you are overwhelmed and walking around in a fog so praise yourself for all the things you do! What are some signs you notice when you are nearing burnout?
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