Saturday, October 17, 2009

Compassion Fatigue




I have always understood compassion fatigue to be the sort of burnout that occurs in those caring for someone with a chronic illness like Alzheimer's or someone affected by Post Traumatic Stress Disorder. And while I don't pretend to know, really, what the medical meaning of compassion fatigue might be or its diagnostic criteria, I will play loosely with the term here in this post.

As I was driving one of my sons to his flag football game this afternoon, I started thinking about the Epilepsy Walk that we're doing tomorrow afternoon here in Los Angeles. This is the third time we've raised money and gone to the walk, and while it's the year where we've raised the least amount of money, I can account for that because of the general state of the economy. But interestingly, our team of walkers has dwindled down from about twenty plus people when we first did this two years ago to just our family tomorrow and three friends. I don't think this is from any lack of support from my friends or family -- Lord knows that I would be dead if it weren't for the love and support I get from so many truly generous and wonderful people. What I'm thinking, though, is that there's a sort of compassion fatigue that happens when you're in it for the long haul.

The other day, one of the members of our small community fell and broke his leg badly at a soccer field. Almost immediately, an email chain was sent out requesting dinner sign-ups for the man's family that includes three young children. Now, this man is an amazing person who volunteers to do just about anything -- he is the soccer commissioner, the Cub Scout pack leader, and a seemingly tireless father to his three boys. His wife is equally as committed to their school, their church and all the extracurriculars that come with such a busy family. My point is that our community knows this and values this, so during a crisis, everyone steps up. Within literally minutes, every single dinner for the next month had been contributed and several people volunteered to make the kids' lunches during the next week or so. It was a beautiful testament to community, and I am proud and honored to be a part of it. Much the same happened almost exactly one year ago, when a young guy in our community was in a terrible skateboard accident and suffered a severe head injury. The community jumped to the family's aid and the outreach was just incredible to see.

But back to compassion fatigue. All of this was running through my head as I drove my son to his game. I have to hire a babysitter on Saturdays for Sophie so that my two boys can even do their sport activities. We really can't afford a babysitter all day on Saturdays but the alternative, to me, is even more expensive. I couldn't possibly drag Sophie in and out of the car all day and have her sit in the hot sun while Henry and Oliver played flag football, baseball, and soccer. I couldn't in good conscience watch her seize under that hot sun or even allow the boys to go to their games without a parent there to witness their boyhood, cheer them on and smile at their achievements. I couldn't imagine depriving them of these experiences, either. The Husband is a chef, and everyone knows that Saturday is probably one of the busiest days of the week, if the not THE busiest, so he really isn't available. So I hire a babysitter who takes care of Sophie at home all day while I run around willy-nilly from sporting event to sporting event. And the boys have a bit of normalcy and, well, so do I. I actually hate sports, but not when my boys play. I LOVE to sit in an athletic chair, under the sun, and watch my two glorious, healthy athletic boys revel in their lives. It's a freaking relief for which I am completely thankful.

And where, you might ask, does compassion fatigue fit in? Well, as I thought about this man with the injured leg and the boy with the head injury and the amazing response of our loving community to these accidents, I sort of, kind of wished and wondered why the same community didn't come out in full force and walk with us for Freedom from Epilepsy. For the tiniest second, and I mean tiny, I had the thought that my outspoken-ness is offensive and that even this blog forum might have offended people who ordinarily might support us. But then I thought that's just paranoid (not to mention narcissistic and all about me) . I began to articulate, in my thoughts, the idea that compassion fatigue is something that others might even have for us. You can't raise money for epilepsy research for over fourteen years and not eventually hit a wall, is what I thought.

Crisis becomes every day. Compassion gets tired.

I  wish sometimes for people to take Sophie for walks around the neighborhood or perhaps even a stint at an overnight with her (because she has seizures during the night every single night and one of us always sleeps with her). I wish these things only idly, though, and certainly with no complaint or resentment because I am secure in the knowledge that everyone knows our family and loves them deeply. What strikes me, though, and I'm certain it is the case for many families like ours who work day in and day out caring for a disabled child, is that when you're not in a technical crisis, you're basically left alone. No one could possibly help our family, day in or day out, and I don't expect anyone to, really. And I know, too, that at least from the outside, most people think we're doing just fine. Not a day goes by that someone doesn't say that they don't know how I do it or that you're so calm and chilled out. My husband is regularly called a saint, and the two of us laugh at how we know the real truth about each other and it's often not pretty.

I don't know what the answer is to this, really, other than I need to be more gentle with myself and with my husband and with my sons as we live this life. I understand compassion fatigue, the way I interpret it, in myself, in my family and even in my community.

I think, too, that I must work harder to raise awareness about seizure disorders and perhaps, instead of raising money for cures and research, work instead to help raise money for respite care, for recreation and inclusion opportunities, for care facilities that are beautiful and humane where children like mine have a place to go as their parents age or reach a point where they just can't do it anymore.

In the meantime, I thank my parents for helping me with money for childcare when my respite money dries up. I thank my husband who works so incredibly hard for our family and, when I'm practically choking on despair tells me that we are giving Sophie a happy life. I thank Mirtha for her Saturdays, away from her own children, caring for my daughter. I thank my friends who listen to me always. I thank those who have donated money year in and year out in support of our cause. I thank those who wanted to be at the walk tomorrow but who weren't able to be. I thank those who will be there, walking with us. And I thank my sons who despite this crazy life they lead, kick and catch balls with amazing beauty and look to me, watching them, with smiles on their faces.

And to those of you, like me, well, I love you. And you know why.

29 comments:

  1. You know what? I don't have one word to offer except that you have opened my eyes to another world and when I visualize it, I see your daughter's beautiful eyes and I cannot imagine how it must feel to see someone you love go so far away every day.

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  2. Oh Elizabeth, you have me in tears again. I know what you mean..though amazingly I have never heard the term "compassion fatigue". In our community I think about the people I know battling cancer, living with a parent with alzheimers, or raising kids with special needs like us...the kinds of battles that sometimes go on and on and on. As you say, the kinds of battles where it looks like the crisis has passed, but in reality the struggle is daily, hourly. Even I sometimes have to remind myself that our family has extra needs and THAT is why I can't get it all done, and am stressed and grumpy. We also do an annual walk and our numbers (dollars raised and walkers present) have dwindled significantly. I myself am fatigued -- my fundraising letters, when I even write them, aren't as good or persuasive as they used to be and each year we are less involved in the walk planning. It is so hard to keep up the pace..
    I hope you have a wonderful walk tomorrow and can feel the support of all of us who wish we could be there!! While I am tired of my cause, my life, I still wish I could take Sophie for walks or come support you at your walk.

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  3. Believe me, if I lived in your area (or state?), I would LOVE to take Sophie for a walk, or give you a respite. I would be honored to do it, and would LOVE it.
    Wish I lived closer.
    Someone from my family came EVERY SINGLE WEEK when we were in the hospital, and stayed with the kids for an evening, so that Gregg and I could have a dinner out, in a restaurant, ALONE together. It was our only time alone, each week. We could talk privately, have a glass of wine (not allowed at Ronald McDonald House or the hospital), sneak away for a few moments of romance, and return refreshed for the next week. It meant the world to me, and it always will. I wish I could give you the same gift!

    Have fun tomorrow. I am thinking of you.

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  4. P.S. Those evenings are now a treasure to the family members who spent them with David and Katie, too.

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  5. Amen. I see the same thing around us, and it is tough. I might say that it is not so much "compassion" fatigue because many of the people may still feel compassionn, but it is the acting upon it which drys up. The overwhelming percent of help I get is purely because I pay for it. People care ... but don't act. They get wrapped up in their own lives, how dare they ... ;)

    Wonderful post. Good luck with the walk tomorrow.

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  6. Elizabeth we are on the same wavelength in different ways.

    I wrote a post today for Tuesday for my 500th post and I use compassion fatique in there.

    I totally get it and I'm tired of the term. I know what it means, but I'm tired of it.

    They don't see people like you and me and Sophie and Jacquie as having a light at the end of the tunnel. They don't see the finish line for us, so they don't want to even start.

    Oh well, I have eaten sour grapes tonight and I am tired.

    Helping Jacquie with the bedpan tonight and not a soul in sight.

    Okay, I'm going to bed.

    Love Renee xoxo

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  7. I'm with single Dad...and Renee. At first, everyone at the school where I worked was super duper...then it dawns on them that the whole thing is "forever" and then it all dwindles away. No one calls, no one asks, all gone. Moving away from here...and it doesn't matter a wink to anyone...even to me.

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  8. I love you!!! I am wishing an awesome turnout today!!

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  9. I'd never heard of compassion fatigue but as soon as I saw the words together, I knew what it meant. I think it's why very few people ask about my son anymore. The situation is permanent, and people don't want to hear that.

    I have no solutions or advice for you, just empathy and sympathy.

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  10. Nothing of wisdom to add, I imagine all of this is so complicated.
    I know I like to do something that does feel like it really helps the family/situation.
    Dropping off a dinner or a one time fundraising blitz is satisfying, whereas yet another walk leaves me feeling like , does this matter.
    My take on this would be that a broken leg doesn't merit such an outpouring when there are neighbourhoods full of families with greater need.
    But what would you do .. put up a poster at the school to ask for volunteers for respite?
    I bring meals and do some gardening for a recently divorced friend , as he is struggling to learn how to be mom and dad to the three children that would rather stay with him. But the yet again Run for the Cure this year, I took a pass. Guilty as charged.
    But no less willing to help if asked.
    Sorry for the rambling... I wonder how many families are so tired and would just love our time.

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  11. I totally understand you and more than that sympathise with you. Compassion fatigue does set in and more so in these times of short attention span. That is why whoever thought up the slogan 'Make Poverty History' shouldbe sent to a sweat shop in India forthwith. Because it ain't gonna happen. Either now or ever. But I guess that 'Let's Try to Balance Society So That There Are Fewer Poor People' does not make a good slogan. Compassion fatigue also sets in when charity activities impinge upon our lives as individuals. And I don't mean that negatively. When I arrived in London in '97 I saw an ad on the telly for a trust that helped black children that needed bone marrow donors. I donated blood twice. But if you had asked me to make a different commitment to the organisation (maybe volunteering on weekends) I would have adopted another position because at the time my wife and I had just had our first child.

    So, it depends on individuals and organisations. I wish you the best of luck in your walk and those three friends? I hope they multiply by thirty come next year.

    Greetings from London.

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  12. What a wonderful post! I would like to let your readers know of some free resources and articles on compassion fatigue. Some of the resources were originally designed for professional caregivers but I believe you will find some helpful information among it even if you are a caregiver.

    There is the compassion fatigue awareness project, by Patricia Smith: www.compassionfatigue.org

    My own website: www.compassionfatigue.ca with a whole bunch of articles on strategies and self care resources if you click on "Resources and links" Finally my colleague Jan Spilman who is a caregiver herself, write a weekly blog at www.caregiverwellness.ca

    All the best, Françoise

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  13. I know how you feel. I have never had a family member, other than my sister in law, offer to care for Katie. My sisters and my brother seldom ever ask after her either. My husband's sister never asks and is only interested in having a relationship with my middle daughter. No friends either. It's lonely taking care of Katie.

    As for the respite money, when it runs out, they should be providing more. Crying often helps, just saying.

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  14. Such a great post. I'm so glad you brought up this topic. In my experience, it can take as little as a couple months for people to go into compassion fatigue. As Claire said, once people realize that it's forever, they slowly disappear.

    I'm so glad you have two beautiful healthy boys to sort of balance things out and provide some sort of normalcy for you. I hope your walk went well today. Keep us posted how your walk went. Thinking of you.

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  15. What a wonderful post. Wonderful for it's clear minded, open hearted communication. Your intelligence is so clear. Your heart is flexible. Your daughter is lucky to have you as she moves through what must be a confusing life for her.

    I liked what Deb had to say. I do a lot of actual 'action' helping but almost never do walks etc. For example a mom I heard of has breast cancer so i approached her and offered free babysitting, and I gave her our free passes to the aquarium, but I did not do the breast cancer walk.

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  16. My goodness, Elizabeth. I feel so silly the way I keep saying, I can relate. But... I can relate!!! And it means so much to me. I didn't have a term for it, but another parent and I were just discussing this very thing the other day. Compassion fatique. I'm glad to have a word for it now, somehow that helps. Sometimes I think I couldn't even begin to describe what our days and nights are like - its just so out of this world.

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  17. I wish I were in L.A. today to walk with you, and hope you had an excellent walk!

    RE: Compassion Fatigue. It sounds like even the deepest well runs dry. You may have to go find new places to dig.

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  18. All of your posts are wonderful, Elizabeth, but this one particularly touched me.

    I love your idea to "work instead to help raise money for respite care, for recreation and inclusion opportunities, for care facilities that are beautiful and humane where children like mine have a place to go as their parents age or reach a point where they just can't do it anymore."

    Yes, yes and yes.

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  19. Thank you so much for sharing this Elizabeth!

    I wish for the same things.

    I love the way you take us into your world from the perspective of your whole family -- your hubby, sons, Sophie and yourself. You bring each one to life.

    I've often talked to my husband about the issue of friends and family not stepping up to the plate in the way we would hope. I think you're so right, that people have the energy to respond to a time-limited crisis, but it's the rare person who can offer practical support when the need is long-term.

    I do think we need to redirect some attention from research/cure to quality of life fundraising -- so that our children can participate as fully as possible in life, and we, as families, are supported through respite care and other services, so we can re-energize.

    Congratulations on your Epilepsy Walk. Louise

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  20. You are ever so right, Elizabeth. When our son was dxed with leukemia at age 5, the community was galvanized to donate time, money, meals to help us out. The protocol for fighting the disease is a 2-3 year process. Most folks had pretty much figured all was well after several months since our child was still alive. Unless "new" news came out with new details, it was all old stuff.

    I felt that was fine, as I feel that we do have to learn to deal with these blows once they go from acute to chronic. You just are not going to become a permanent obligation to others. Help is to help with that first blow, the initial shock so that you can get a game plan in place.

    But in cases where you have someone on a declining course, it is very difficult to get it under control.

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  21. I love you back!

    This is such an amazing post. totally resonated with me to my core. And you articulated it in a way i never could.

    I too see the same phenomenon occur in my community - I too reach out and help those in need. I hear everyone talk about how "wonderful" and "Patient" etc I am and look at CB and think bc she looks so good - she ambulates, she smiles, she's pretty and well kept, that we live a life close enough to normal. Then i just wonder if it's me and if i'm just weak...

    I have never had the support of my family. Every time I walk in the Autism walk, I walk alone with my husband and children. WE have no other team members and never have. WI don't even bother to ask people for donations anymore, especially family. My own parents have never taken CB off my hands for a night in her entire 14 years of life. Just once, I'd like them to do something to show me they "get it" and they care about her and what our life is like :)

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  22. It's like you're in the trenches of a nightmarish wartime .... I hope for more of those sunshine saturdays for you .... and for those words of your husband to ring loudly in your ears and heart. You are (all of you together - not Just You) giving Sophie a happy life .....

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  23. Elizabeth, your words amaze me. I love how you think and love that you can express it in the way you do. I think I've told you this before, if I have, you need to read it again. You are opening my eyes up even more to families who's children deal with epilepsy. Thank you so much for that. I know that it's not just for good reading either, sometime in my life I will come back to these words from you...

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  24. Great post & so true!! i think after a while onece the newness of it all wears out, that people "think" we have it all under control. How very wrong they are. it is the very time that we need the compassion, when the day in day out starts to wear on you, and you wonder if you can make it another day. Monica

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  25. I have nothing to add but to say I wish I lived nearby. I would love to walk the neighborhood with Sophie for an afternoon.

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  26. This is so completely true and I know exactly what you mean. People just start taking your struggles for granted.

    Sometimes, I ask. I asked our local grocer if he provided services for the disabled. Turns out, he does. You can call in a list and they'll put it together for you, bring it out to your car, take your credit card in and run for you and everything.

    So maybe it's a two way street. Maybe people think we've got it taken care of and we let them think that rather than making a list of specific needs and letting it be known.

    Jsut a thought. . . wonderful post.

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  27. This post made me sad. Not sad FOR you in a pitying kind of way. Just sad. My father was diagnosed with a chronic illness when I was 5 years old. He died when I was 14 and I remember thinking at his funeral - where were all you people? He was trapped in that hospital bed up in his room for years and why didn't you visit him? I wouldn't call it compassion fatigue. I call it a short attention span. One year I planned a big BBQ at our house after the CF Foundation's fundraiser walk. By the time the weekend came around everyone but our family had bagged out on the walk but they called to assure me they could make to to the BBQ at our house later that day. That was over a decade ago. i wish I could erase that memory from my mind.

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