Care for the Caregiver

airplane oxygen masks

You know how when you are getting the pre-flight instructions on an airplane, the attendant always instructs you that in case of a loss of cabin pressure, you should put your own mask on first before helping a child or somebody who needs assistance?  Can you imagine this?  I’ve always sort of thought there was no way I would do it like that.  I imagine that of course I can hold my breath and confidence and strength under pressure together long enough to put masks on my child – NO - all of my children and then help myself.  Obviously, they give you this direction for a reason.  Obviously, if I am passed out from lack of oxygen because I overestimated my natural and emotional ability to fight the laws of biology and physics… well then, the kids will get to join me because I won’t be there with my mask on to help them.

So, it’s cliche’… but so very true.  People who provide care to others, especially people who care for somebody who has a chronic illness – need to take care of themselves.  It doesn’t really matter whether it’s your child, or your spouse, or a sibling, or a parent you care for…. If somebody routinely needs your shoulder to lean on and needs you to raise your gloves in their fight… well then, you’d best stay in fighting shape.

If you saw me, you’d call me out as the biggest hypocrite.  I’m a walking poster for somebody who needs a hell of a lot more exercise and a hell of a lot less comfort food.  And I won’t bore you with an excuse of how Ben and Jerry’s in the wee hours of the night is sometimes how I feel like I am taking care of myself.  I don’t think I am the only one who has turned to french fries when the flare has been really bad.

But now I have the glorious freedom of normalcy in our lives, which gives me some time to reflect.  Now that my energy is not entirely consumed with doctor’s appointments, and medications, and side effects, and fear – and the hopelessness of watching my child struggle with pain – I can step back and see that maybe it’s time to do a little self maintenance.  Because I’m not super-human… not invincible.

I had my first panic attack when I was 34, about 3 years into Caitlin’s diagnosis.  Until that time, I was under the super-arrogant impression that panic and anxiety were emotions that afflicted weak people, sad and depressed people… people who didn’t know how to “keep their chin up”.  I was under the totally insane, fallible impression that mind can ALWAYS rule over matter – and that you simply had to keep putting one foot in front of another and that I can pretty much handle anything.  That was until I had that first panic attack and felt my heart race, felt my body go hot and cold then flush and clammy, felt tingling and pains that certainly indicated some sort of heart attack or stroke (I thought).  And all of a sudden, I became a person whose thoughts could manifest real symptoms in my body.  I became a person who could not, no matter how I tried – stop panicking.  I could not pull  my mind away from thoughts of death, and the feeling that I couldn’t breathe, that my chest was closing in on me.  And even though I still went to work, and drove the kids to school, and went to the doctor… and did my mommy-wife duties – inside I was totally freaking out.  I would lay down at night exhausted – but could not sleep – could not slow down the avalanche of fearful thoughts.  Sometimes, I would close my eyes and think “I will probably not wake in the morning”. I came to the conclusion that I am not invincible and that I needed some help.

I’ll skip the long story of how I got back to myself (and save it for another time)… but my point is that nobody is invincible.  Nobody can wear the super hero outfit ALL of the time.  Everybody needs a little TLC…

When you are the parent of a child with arthritis, there often is not time left to take care of yourself.  The priorities are about your baby – and how you would do anything – stay up any amount of hours, give any amount of money, undergo any hardship – if it would only make them better.  But the sad reality is that, no matter our willingness to endure the pain for them – we simply cannot.  And in running ourselves down in the process, we may end up robbing them of our own health, our own strength and our own sanity when they need it the most.

So maybe in the back of our minds- we can try to give ourselves a little break and try to keep our needs on the to-do list every once in awhile.  I know that for the mom and dad in the hospital for days with a sick child – this will not mean taking the time out to go out for “date night”.  But it might mean something as simple as bringing along their favorite pillow, or book, or taking a few minutes to step outside and feel the sun on your face (doesn’t always take much).  And for those who have the luxury of more time, maybe it does mean yoga class, or getting moving, or just listening to the birds in the park for an entire afternoon.

Whatever it is…. for the caretakers… there are very important reasons that you need to find a way to get your mask on first.  Take care… of yourselves, so you can be ready to care for those you love.

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