Living Duchenne: Let's Talk About Stress, Baby


Guest post by Ivy Scherbarth. Ivy is a Colorado/Wyoming FACES Coordinator for PPMD. Follow Ivy at her blog, Living Duchenne.


Living Duchenne: Let's Talk About Stress, Baby

 

I seem to have inadvertently done an experiment on myself testing aspects of the theory that caregivers need to tend to their own needs or face burnout. This month I found myself suddenly in the position of sole caregiver to a larger family than I'm used to, with more complicated needs. I was providing lodging and meals to my sister- and brother-in-law, the former of whom has chronic fatigue syndrome, insomnia, and complex food allergies and dietary restrictions, the latter of whom has a kind of virulent cancer which has destroyed his immune system and who just underwent 6 weeks in the hospital and a leg amputation, who was on dialysis three times a week and whose dietary restrictions were just as complex as his partner's but did not in any way overlap with hers. I was also caring for the people in my regularly scheduled life: an eight year old with a busy schedule, a five year old with Duchenne, six chickens, and one cat who just cannot be taught to pee in the box rather than right next to it. And then my husband broke his arm and instead of him playing his usual role of tireless helper, co-driver, and general all-around superguy … I lost his help and he became another recipient of my caregiving. It's been exciting around here.

For some reason, though I have many theoretical skills and coping mechanisms up my sleeves, I have a very hard time pulling the useful ones out when I need them. Maybe it's because implementing those strategies would require a change of habits. Maybe I just haven't figured things out yet. Or maybe I get into adrenaline-panic mode which prevents all rational thought from occurring in my brain. Oh, and chronic sleep depravation might have an effect. In any case, under extreme duress I tend to sink to the lowest level of my training. And if you happen to hold the job title of "Mom" or "Dad" you'll know that my training was precisely the same as yours for that position, ie: winging it without a clue.

In any case, there I was, trying to meet all of the mounting needs around me by neglecting myself like a "good girl" should. I was faced with decisions like this: I have twenty minutes at home between picking up one kid from school and driving to get the other one. I can work on cleaning the kitchen (which will probably take an hour to finish), I could fold the clean laundry on my bed that I've been working on for a week (which looks like a mountain at least 45 minutes high), I could sort the dirty laundry and get it ready to wash (which will definitely take an hour), I have to clean up the cat pee (again!), I could eat something if I could find something to eat (now that it's 2:45pm), I could take a shower (for the first time this week), I need to write a grocery list and come up with something for dinner, and I'm late on that essay I've been planning to write, I have 130 unread emails and 6 voice messages on my phone, and … Oh, Rain needs me. He's stuck in the bathroom. "Ok, Rain, it's time to go again. Let's start working on coat, hat and boots and you can eat your snack in the car." (Again.)

Short term coping strategies don't work on long term crises. Replace sleep with coffee? Replace shower with perfume? Finally succumb to insanity? No, that would leave my eight year old in charge of 5 people with disabilities, 6 chickens, and one very unhelpful cat. The whole situation would be funny if it weren't so terrifyingly close to the bone.

At a loss, and having already given up all of my appointments, hobbies, business interests, and personal care, a little observer started taking notes in my brain. (That would be the training I got for the job that came before my Mom job: Anthropologist.) Here's a summary of my results.

Stating observations of my plight in a bemused voice to my husband who had one arm tied in front of his back and was completely addled by Percocet did not work. Yelling and complaining not only did not work but exacerbated the problem. It is interesting to note that although I may feel that no one is listening to me, I am my own very attentive listener and I am deeply influenced by what I'm saying to myself. Right. Attempting to get together with friends helped just a little bit while I was with them, but I found that venting to kind people who don't really understand wasn't enough. My usual go-to's also failed me: brownie sundae and a movie after the kids go to bed, rereading beloved literature, a glass (or two) of wine with a good dinner. I didn't have time to try sensible approaches like getting some exercise out in nature or taking a nap or doing a satisfying hobby or calling my mom on the phone. So I finally collapsed into silly approaches: I bought shoes (that always helps). I spent three days in silence (that was awesome-- more on the manifold virtues of silence later). Then I had a three day migraine and followed it up by several missed appointments, a botched deadline and a few days of subsisting entirely on cold cereal and takeout food.

And then I went to my local FACES meeting and finally, 1. I did something useful to assist other people in my community, and 2. I spent some time with people who get it. These are the people in my world who don't need to be told why I'm upset. They know all about it. These are my friends who know about grieving before death as well as after. These are my friends who know about prioritizing between needs and needs. These are my friends who understand having to schedule in an "extra" hour for helping their child use the bathroom and get dressed. These are the people who agree that eating a granola bar while driving at 1:30 in the afternoon counts both as "lunch" and "taking care of myself." Right now, some of them have it a lot harder than I do. But we all know that someday my son will be where their son is now. We all know that someday we will be those parents who suddenly and horribly find themselves with too much time on their hands.

I don't have any solutions to the ongoing conundrum of caregiving. Clearly this is a long term experiment being conducted by many people. It is interesting that not only does it seem like none of us knows what we're doing, it seems like we've never seen anyone who knows what he or she is doing either. I have never heard a (true) story of a caregiver happily doing a great job of balancing her own needs with the needs of the recipient of her care. Maybe I just don't get out enough to have encountered that story. Or maybe that story isn't out there because we're all at home (or, more likely, in the car) working as hard as we can and feeling isolated and frustrated but not wanting to admit it to each other because we think that the other family over there has some secret to success that makes it easier for them. That, and it just seems both mean and wrong to complain about the hardships of taking care of people we love, especially when we know that their care is our duty.

Things have eased somewhat around here. Though the easing feels very temporary, I do have a moment right now to report some progress and count some blessings. My sister- and brother-in-law have retaken responsibility for their daily needs. My husband's arm is healing well after his surgery and a month of rest. The kids have managed admirably and none of our missed appointments were for either their medical care or education. The chickens seem not to have noticed anything and I promise that no cats were harmed in the writing of this essay. Oh, and hey! I even managed to write and publish an essay.

 



 

 
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Comment by Brian Denger on March 8, 2013 at 6:06pm

Ivy,

It is a gift being able to verbalize what many in the Duchenne community honestly experience on a daily basis and all too often fear admitting; even to their closest friends.  Taking care of someone with complex medical needs is very hard (Your recent 'adventure' involving multiple people highlights this well.).  This becomes more challenging when you neglect yourself.  

I've written before how parents of children with DMD (And similar conditions) need to take care of their relationship in order to better care for their children while also looking after their own needs.  Too many people think it indulgent to get out of the house to have a drink with their partner or spend an hour at Yoga to unwind.  Not only do I disagree in it being selfish, I suggest it is impossible to do well as a caregiver when you avoid taking care of yourself.  We simply can't focus all of our energies on this inherited vocation in a nonstop manner without negative consequences.  When we are overtired we are less patient and more irritable.  These are signs we need a bit of a break.

People who know of my family's circumstances often assume that I want to hear about their troubles (Do we have a target on our backs?).  Sometimes their situation is relevant or strikes a chord.  One such instance involves an older friend who cared for her husband after his stroke.  She is a very small woman; maybe standing 4' 5" and her husband was a large man at close to 6'.  She told me how she worried about my wife and me caring for two sons.  She described having to dress and bathe her husband and the toll it took on her physically.  In a moment of honesty, she said her husband told her he was satisfied living this way.  With tears in her eyes she asked "what about me?"  Some people might be offended with her question.  Not knowing what to say, I simply hugged her.  They haven't walked in her or our shoes.  

When Matthew and Patrick were diagnosed there weren't many networks of support. (I think the internet was still operating out of Al Gore's garage...)  We all know DMD is a rare disorder and that finding a local family can be close to impossible.   Today there is the PPMD Annual Conference where families are able to connect with others in addition to learning about DMD research and care.  There are PPMD FACES groups and those who participate in the Run for Our Sons program often meet before or after a race with other families.  Being able to chat with another parent without spending twenty minutes describing DMD and its affect on your life is refreshing.  Other families connect through message boards and Facebook that can be part of a 'virtual network'.  These components can be part of that system of support, but don't replace taking the moments needed for yourself.  

Take that time to connect with others in whatever way possible.  It is also important to find time to do things for yourself.  Take an evening walk, read a book, go out to dinner with your partner or a friend or take a long shower.  Being able to relax will make it easier to get through those more difficult days.  If you aren't able to do this for yourself, please do it for your sons.

Brian Denger





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