“Stop Telling Me To Take Care of Myself.”

 

When I saw the title of the article online I immediately told myself, “This is going to be a stupid article.”  I mean come on!  Every parent of a special needs or medically fragile child knows the importance of self care.  Put the oxygen mask on you first before you put it on your child.  Simple right?  It’s how you survive.  It’s how you press on.  It’s what breathes life into you so you can start all over again the next day.  So why would anyone say, “Stop telling me to take care of myself?”

I then read the article and was humbled and reminded that it isn’t always that easy.  Sometimes it seems impossible.  Do you go on a date with your husband or sit by your child’s hospital bed as they struggle to stop the seizures?  Let’s be honest, there is only one choice!  For over six years I have preached the importance of self care.  It’s what we built David’s Refuge for.  To breath life into parents and encourage them to develop a rhythm of respite into their daily lives.

So I need your help.  Would you please read the article Stop Telling Me To Take Care of Myself.  It is a short collection of reflections from parents who have felt criticized by their inability to “care for themselves.”  Once you read it, would you answer three questions for me?

  1.  Have you ever felt criticized by David’s Refuge as we have boldly proclaimed your need to care for yourself?
  2.  How can we better communicate and support a parent’s need to care for themselves with the numerous challenges already faced in your role as a caregiver?
  3.  How would you respond to a friend who says, “It is simply impossible for me to care for myself in our situation.?”

We are always striving to do what we do better.  Any thoughts or suggestions would be greatly appreciated.  There is no doubt it will help us as we continue to offer respite, resources, and support to moms and dads who desperately need to learn how to care for themselves.

5 comment on ““Stop Telling Me To Take Care of Myself.”

  1. Susan Filer

    1. If we are being completely truthful, there is no feeling of being criticized, just the familiar feeling of an exhausted eye-roll, followed by the little voice in my head repeating one question…”How?” Like some of the writer’s in the essay, there IS no one else to step in to cut us a break. Nearest family is hours away, with jobs and disabilities of their own. Those cute little things I read about friends or family coming over for a cup of coffee, with the morning sun shining in through the window to frame my haggard face while I spill my guts…that ain’t happenin’ here, lol! You know? There are no friends. There is no family. I am disabled myself and usually recovering from some back surgery or sepsis or whatever. There isn’t anyone coming to the rescue at these times to watch our special needs, nonverbal 3 year old twins. That’s me getting out of bed with a 5 inch incision on my spine…because I do it best, and because they need “Mom.” I don’t want an award for being strong, I don’t need it. I don’t require fanfare, I’m super humble and laid-back. But those suggestions of “taking care of oneself” and all it entails is, well…laughable. “HOW?!” I see the posts from other moms getting their nails done, going out for “Girl’s Night!” where they look good and sip drinks. I see the posts of moms posting pics of themselves at salons, “trying out some highlights!” Haircuts here are my dude shaving my head in the kitchen. I keep my nails short because my hands are in some type of cleaning solution all day here. The truth and heart of the matter is perhaps this…things are super hard here. But there’s no resentment. I see resentment in the “Girl’s Night!” crowd, and that’s the truth. I’m not running from my family and partner. I don’t want to drink a bunch of wine and forget. I like things here. I may not always love it, it’s not always a good time, but I like things here, a lot. And I LOVE US.

    2. Remind us it’s alright to be honest. Taking care of myself equals honesty, no generics. It’s OK to drop the martydom. I get really mad sometimes, not “cutesy” mad…mad where I am so frustrated and beat and sick and rundown and tired and exhausted to where I cannot move a TOE and I’m ready to rake my face open, and I want someone to tell me that not only am I not the worst person on earth, but to get like this now and again is expected.

    3. I’d say, “Yeah, you’re right. But time does some magic. Things either do one of two things…they get better, or they get worse. And it’s important to not get caught up in being stagnant, that feeling of ‘when will something change?’ That is where the true depression kicks in, when thIngs remain stagnant. You have an enormous amount of power to kind of, get things moving one way or another? Say for example if you’re dealing with a partner who isn’t meeting your expectations. You have great power, you need to use it sooner or later so you don’t end up in this stagnant-cycle. Get things moving. Say, ‘this is what I need, this is what I don’t. Do you see it? What are you willing to do here?’ And then do it. Or don’t. But don’t stay stagnant with your life. People get caught up in stagnation, and it’s within this state where our minds are left to deteriorate. You must continually make changes, but people are incredibly afraid to so that. Taking care of oneself is being honest about what you need, your own daily needs, your longterm desires, communicating those wants, needs, desires to your crew, and yourself. And then act. But keep moving, you stop, you’re in trouble.”

  2. Warren Pfohl

    Susan, thank you for your honesty! I love that “You love us!” Your family is blessed to have you in their lives. Said a short prayer for you that you would heal quickly and find ongoing joy as you care for one another.

  3. lauren usilton

    This article was passed on to me so I am not sure if I am answering the 3 questions in the correct way but here goes…#1 I don’t have any contact with David’s Refuge, although I would love to look into it someday, so I have never felt criticized. #2 same answer as #1…. I haven’t had time to see what you do so I can’t tell you how to improve on it. #3 I hope I would tell my friend what I long to hear, “Yes, I can understand, at least I understand the best that I can. And I agree. Right now in this minute, at this time, it is impossible for you to care for yourself. Now, what can I do, what can we do to change the situation so you can do something for yourself? If you were to take care of yourself, what would that look like? What would you like to do?”

    I do believe many times we as caregivers need to be lovingly confronted with the fact that often we choose not to care for ourselves because we have learned we can’t when in fact we can if we humble ourselves to accept help God sends. But many more times people with good intentions tell us to car for ourselves in ways THEY believe are best for us when in reality they don’t know what is best for us and they are unwilling to help us in order for us to care for ourselves they way they claim they want us to.

    End point… depend on God for all and HE will care for me.

  4. Jaime

    My heart hurts as I read this article and some of the responses. May we all have wisdom to understand the difference between compassion and criticisms. For when they get confused- Anxiety, depression, isolation occurs.

    Think of it this way- life goes on- it is shortsighted to believe we as chronic caregivers are invincible- “the only one that can do it best”.

    Perhaps that is true- but it also robs others of the chance to try and help. It may not be exactly your way- but that may be OK (within reason)- and it may open your world and your child’s…

    For Susan- It is great that you are strong and happy. Cherish that passion and fuel because time is fleeting- and life is such a back and forth dance.
    There may be a day you do not feel as strong, or have the same ability to do all.

    IF that day ever comes, then you will have wisdom to understand the compassion from the statement- “ make time to take care of yourself “.

    Life is a marathon- not a sprint.

  5. Gerry DiCosimo

    I have to agree that if I have a choice to take care of myself or my child it will always be her. Simply speaking because it has to be that way. She needs me and it is my responsibility. My husband and I worked hard to make sure our daughter would have what she needed when we were too old to care for her or when we died. Our plan worked well for several years. The hard work paid off but overnight that all changed. It changed because uncaring individuals came into power from the very agencies that are government run to help support our love ones. So how can anyone help? They can help by advocating for those with special needs to be cared for with the dignity and respect they deserve. Please write to your local government and the OPWDDCommissioner and strongly request that they provide programs that meet their mission statements to provide Person Centered programs
    David’s Refuge has been God sent. We often hold strong because of their clear message:
    1. We are not alone
    2. What we do truly matters
    3. We are loved by an awesome God
    What we need now is advocacy. We need to be a united front.

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