About a year ago, my employer, being the forward thinking organization that it is, hosted a teleconference for employees on compassion fatigue and caregiver burnout. I of course could check almost every symptom box on the list of possibilities. That being said, I have a very difficult time accepting that I feel this way, and that it’s not necessarily a personality defect. I have always been a “carer”, and the thought that I essentially have nothing left in the tank and need to tell people I’m full up? Well, it feels like failure to me.
About 6 weeks after I started my new job? Pregnant. And then along came Jack. I truly believe that this job is one of the key reasons that I have been able to do all that I do for the boys. God put me here so that I would be able to be the mommy I need to be. I was here through the boys’ infancy; I could nurse them on demand with the help of an in home daycare provider. It was hectic- there were lots of interruptions, but it was worth it. Little did I know what was coming with the boys- that this was by far the easy part.
With each of the boys’ diagnoses things became more complicated. As their mom, it was my job to do everything and anything I could to help them- I have been through more assessments (and depressing discussions) than I care to mention, I have taken each of the boys through multiple clinical trials that eventually required me to take FMLA to preserve my employment, I have taken every Friday off for months to take my son to mother-son speech program. We now have in home therapy every day of the week Monday-Friday from 4-6pm. While I am still working. As I have said, I am extremely thankful that I have the job that I have, because otherwise, the boys could not have this. And I try to focus on that.
Parenting two kids with autism is incredibly fulfilling- and unimaginably exhausting. I think that one of the hardest parts, a part that many on the outside looking in may not even realize, is that there is no true treatment roadmap for our kids. And there is no one central to turn to, to tell you what you need to do for your child. Instead there are about 20 cooks in the kitchen, all with different suggestions, different ideas, and you, as the parent, are left to sort it all out. Are you going to treat your child medically, assume that there is some type of underlying physical issue contributing? Are you going to focus on behavior? Are you going to focus on sensory issues? IEP’s? Couseling? Equine therapy? Music therapy? Vision therapy? Well, the jist is that no one can tell you what is going to actually help. All modalities have “evidence” that their methods work. How do you choose? Can you do it all? Well I’m here to tell you that I have tried. I have tried to continue working full time and providing all of these things for the boys. Is it possible? Well, what are you willing to sacrifice? Your Sanity? Well-being? Your family life? Your marriage? These choices are no fun, they are actually quite terrifying. And there is no way to know if you are making the right ones
My job no longer involves face to face, physical caring of patients. That does not mean that I am not still caring for patients. I spend hours on the phone with my patients now, and am a bit of a jack of all trades. I review their clinical information and determine if they are eligible for a transplant, yes. That is one of my main jobs. But after this initial step, I call these patients, establish professional relationships with them and help them with everything from finding transportation to appointments, getting their medications, explaining the transplant process, helping them find a transplant center that will accept them, monitoring their rehab attendance if there are substance abuse issues, to figuratively holding their hands when they are feeling low, helping them find a caregiver when family members fail to support them, and listening to them express their doubts about moving forward with transplant, their thoughts about dying. All while being recorded, ha. And being called by my son’s school daily as he adjusts to his new placement, being asked to get on the phone and “motivate him” to work.
I am lucky to have a partner in this- my husband. The reality of the situation is that he now works an hour from home, so I am on my own with all of the daytime issues. The fact that I also have a full time job is irrelevant, as he is too far away to assist. And I have NEVER discussed this before- but my husband is also chronically ill. I won’t go into details, but I will say that his illness leaves him incapable of helping a fair amount of the time. He is busy trying to keep his own health in check, as he should be.
I find myself yelling at my husband for being sick. I find myself not responding to my friend’s calls and messages, actively avoiding them even. I find myself looking forward to work, because it is my break. I find myself running until I am completely numb, both mentally and physically. I find myself locking my bedroom door for 20 minutes so that Jack can’t come in and talk about planes- not that it helps, as he is content to continue his monologue through the door. I find myself breaking down every time Jack has a meltdown and becomes physically aggressive- and I need to focus on him, I need to remain calm, I need to follow the plan the behavioral therapist has in place. But with all of the above that is going on, all I can think is, now he is hurting me. How can this be? What have I done wrong? What is wrong with ME? This one change to the status quo has all but cracked me- it is the proverbial straw that broke the camel’s back. I can handle a lot. I DO handle a lot. But lately, it feels like it’s just too much. I end the day so exhausted, so overwrought, and so empty. I often wonder how I will make it through- each day feels like it's own individual battle. I wake up in the morning and brace myself for all of the unknowns that are about to be lobbed my way.
So what happens in the face of other stressors when one is already feeling like this? I am told my work hours are going to be changed, that it is mandatory- ok, whatever. We have a financial problem- mkay. House crumbling around us? No biggie. Get yelled at at work? Oh well. I have no ability left to mount a response to these things that seem so mundane these days. And maybe under the circumstances that’s a good thing- it’s definitely a protective thing. I am numb to so many things- my patients at work don’t really affect me the way they used to- I care, but I don’t. I do my job, it is my JOB. But the passion? It’s gone. The compassion? Well, I can fake that. I am hanging on by a thread, trying to remind myself that if I made it through Nathan constantly banging his head on the floor and standing on his head, I can make it through this. But fatigue? Burnout? Doesn’t even begin to describe it.