Caregiver Burnout is Very Real

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. 

http://www.webmd.com/women/caregiver-recognizing-burnout

 

I became a nurse (gulp) 16 years ago.  It was the most natural thing on earth for me.  I studied biochemistry in college and accepted a research internship with a pharmaceutical company.   I did this full time for a semester and by the end was ready to emit a primal scream.  The lab- silent.  The petri dishes- did not answer me!  This particular lab was particularly stifled, not even music was allowed because apparently the researchers could not agree on a genre.  That was all it took for me to know that this was not to be my path in life.  I needed people; I needed to help people directly, not by isolating something under a cell culture hood!  When I returned to school I changed my major, transferred to Hopkins and the rest is history.  I chose oncology, bone marrow transplant as my area of practice.  I loved that they utilized primary nursing and that we functioned in and rotated between the outpatient and inpatient setting and also could transition patients and keep them when they required ICU care.  This resulted in nurses knowing their patients for months, seeing them daily, and unfortunately sometimes seeing them come back again and again for years when they relapsed or had complications.  It was definitely emotionally draining.  It was also incredibly fulfilling.  About seven years in, I needed a change.  I had had a string of wonderful patients pass away and to be honest, I was burnt out.  Also, I think God had a plan for me- I accepted a position as a transplant case manager with an insurance company- and made the eventual possibility of working from home a condition of my employment.

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. 

 

To Those Who Have Said....

As autism parents, we all experience an incredible amount of judgment, advice, “words of wisdom” and whether intentional or not, belittling.  Sometimes it is truly a result of someone trying to make us feel better, the whole “it’s not that bad” idea.  But the bottom line is that when your children are young and newly diagnosed with autism, well, it IS that bad.  It’s awful.  I am sharing this not to make anyone feel badly who may have said these things, but to help open people’s eyes to the truth.  Autism is not a blessing in our house, it’s not.  And frankly, autism is one of the most belittled, minimized, diagnoses out there right now, between the kids who reportedly “recover”, to the kids who thrive, to the idea that it’s overdiagnosed and not that big of a deal.  Then to the, “why are you treating them, accept them as they are?” or “what else are you doing for them?”, or “why seek medical treatment when it’s a not a medical disorder?” (YES IT IS!!!!).  Everyone wants to fight over what causes autism, and talk down when they don’t agree with another’s opinion.  Everyone wants to debate what to do for children who have autism.  Nothing we do as autism parents is respected in the way that it should be.  Everything is minimized, until another child drowns, or a high schooler goes on a shooting rampage and all of the sudden people are talking about him/her being on the spectrum.  It’s a mighty fine ball of wax to be handed as young parents- because there is no way to “do” this.  There is only feeling your way and praying and finding amazing people who have been there and want to help.  It’s a big cluster fuck if I’m being honest, which apparently today I am. 

So without further ado, to those who have said:

“Of course Nathan is going to talk, he’s just a little late- I have zero doubts and you need to stop stressing so much about it”

Wrong- here we are today, at almost 6 years old.  I was right to stress because so much blood, sweat and tears have gone into getting my sweet boy to say MAMA to me, purposefully that you can’t even fathom it.  You have no idea what that feels like, to put your heart and soul into one little being every single day for 6 years and finally, finally hear him say mama (again in our case, as he said it before he regressed and then lost it).  Any parent, if their child is not developing normally, is going to stress- and they are right to!  You do not have the answers- no one does- that’s the scariest part of all. 

“Get him into early intervention, you won’t even recognize him by next year”  (said by a teacher, well meaning)

I did it- 4.5 years ago.  I recognize Nathan quite well.  He is progressing now.  But for close to 2 years, I can truthfully say that he did not.  Everyone knows a kid who had intervention and made incredible strides- it’s so awesome.  But it is not the norm.  Not every child does this.  Mine did not.  And for those two years, I was so angry at that early intervention teacher, because she said it!  I waited for it!  It didn’t happen!  And God knows I wanted it to.  I took him everywhere I could, took communication classes, took him to studies at Hopkins and NIH.  And he didn’t progress- until he did.  And no one can predict when and if that is going to happen. 

“my kid is obsessed with things too”

WRONG WRONG WRONG!!!!!! If I showed you an age progression of photos of Jack, you would see him with airplanes in his hands from age 2 until now, which is age 8.  You cannot have a conversation with my son without him bringing up his obsession at least 3 or 4 times- on a good day.  His obsessions keep him from being able to focus on anything, and I mean anything else.  He struggles in school, he struggles to eat, he struggles in therapy, he struggles to do really any tasks because his little brain cannot move past airplanes, or bulls, or whales, or crabs….it is REAL, and while your child may go through a week, or even a month of this from time to time, we are not residing on the same planet on this topic.  Not even close.

“He seems fine, and god is he cute!”

Now see, I can understand what you are trying to do here, I really can.  And I more than anyone know just how cute my kids are.  (they ARE!).  But it actually makes me feel like crap when you say he seems fine (either boy).  They are not fine, not even close.  They may be doing well today.  That being said, while you may even mean, right at this moment, the statement conveys that there is nothing going on here- and it minimizes our daily struggles. 

“My kids hate changes in their routines too!”

All children thrive on routine, I am not disputing that.  But can you go down a grocery store aisle for a second time without a full on meltdown?  I can’t.  Can you take a different route home if there is traffic?  I can’t.  Can you walk around your neighborhood a different way?  I can’t.  Can you leave the radio playing as you pull into the driveway?  I can’t!  When a therapy provider calls and says they can’t make it, or that they will be late, or that they need to change days, do you worry about how you will accommodate that change with work, or do you worry about the fact that it will likely throw your son into a tailspin?  I am B (well and A) That’s what I mean by rigid.  That. 

He’ll grow out of it (in regards to Jack)

I just can’t even.  Yes, he has learned some new strategies to help him function a little better in life.  Has he grown out of his issues?  NO.  Some of his issues have lessened, he is more capable of dealing with unusual sounds and things like that, but these issues are replaced with others, such as new behaviors and even aggression most recently.  This is not thumb sucking people, or a blankie.  This is a lifelong challenge

“You need to be stronger”

This one really sticks in my craw.  It was said to me quite a while ago, by someone who barely knows me, and knew very little of our family situation.  Oh, and they were also intoxicated lol.  It didn’t make it sting any less.  No one knows what all goes on behind closed doors, not even the people who think they know.  During the time in our lives when this was said, I can now confidently say that I was stronger than I ever could imagine being and moving heaven and earth for my family even with lots of resistance from other members of the family.  I handled the situation, quite frankly, beautifully.  Not that I did a beautiful job all the time, but trust me, if you knew the reality of everything I was facing, you would never, never say that to me again.  EVER.  I have bad days, weeks, even months.  But I put my head on my pillow every night and fall right to sleep because every single day I know I have done everything I can for my babies.   You try it—you try this life--- and then we’ll talk

Professionalism, Boundaries, and In-Home Therapies

I had a personal experience several years ago that clearly still impacts me to this day.  I worked with a provider where boundaries were crossed, too much personal information was shared and an uncomfortable bond ensued that put my well-being at risk.  That’s me putting it nicely.  In any case, ever since that instance I have remained very careful around other providers, probably overly careful, as I think I finally shook my therapist’s hand (yes, I have a therapist!  I have two special needs kids are you nuts?!?) maybe 4 months ago for the first time after nearly 2 years of work, but it has served me well.

See we have SCADS of providers running around in our family’s situation.  Occupational therapists, speech therapists, special educators, school therapists, many many doctors and nurses, and now just to add a new dynamic to the situation, ABA therapists and techs.  Who are IN OUR HOME.  This throws a whole new wrench into my distancing technique.  I mean I am cooking dinners, folding laundry, cleaning, and doing my job while they are there, so there’s not much hiding on my side.  This is why I have come to appreciate THEIR professionalism even more than I used to, even given what happened in the past. 

I am all for pleasant conversation, I am all for sharing experiences and being friendly, even friendish.  I have provider’s cell phone numbers, email addresses, and we share many pieces of information about the boys, and occasionally even chat when it’s relevant.  You can’t be this deeply into autism, into finding things that work for your child, without this happening to a certain extent.  I am happy to have established bonds with these providers, I am happy that I am able to help my kids without feeling like a bully- you catch more flies with honey- and most of the time that is the god’s honest truth.  The bottom line, at the end of the day though is that these people are here to help my children.  When push comes to shove, my job is not to like these people or get along with them, or to even worry about them.  My job is to advocate for my sons and ensure that they are getting what they need and deserve. 

I have had some great recent experiences with ABA, for which I am extremely grateful.  Nate’s ABA technician has actually really spoiled me for most other techs.  I took it for granted when Nate first started his therapy and up popped two amazing techs who focused on my child and were committed to his success.  We lost one when she went to work at a social skills camp for the summer, but have had the other with us since March, and watching her work with Nate shows me what ABA is supposed to, and can be.  We also recently lost the boys’ actual ABA therapist when she moved, but the new therapist seems great so far and there are no issues. 

But Jack- poor buddy.  His first tech was almost shy with him, and when behavior management is one of the main focuses of the therapy, and your kid is super smart, that’s just not going to fly.  Not to mention that she had difficulty helping him with his math, because she had difficulty completing it herself. At one point he was taught writing the time on a clock backwards (minutes for hours and vice versa).  His teachers actually asked me what was going on with his homework because it was coming back incorrect.  I think they were concerned about my math skills.  This was the first practitioner I have ever asked to leave in my almost 6 year autism journey with Jack.  The fight to get these services was no joke, and I was not going to stand by and worry that he wasn’t getting what he needed.  Meanwhile, it took nearly 6 weeks to get a new tech.  Which is where we are now- one month into working with Jack’s new tech.  Who, when she is with him, and focused on HIM, is excellent.  But those are the two current issues, and they are HUGE.  Since July 6^th  when she started, there have been 4-5 absences and 2 significant latenesses (like over an hour).  I have been as empathetic to this as I possibly can, as I of all people understand that unexpected things happen- but at the same time, this is about JACK.  And when every session becomes about the professional, and the things happening in their life, that is not beneficial to my son either.  He should not know about deaths in the family, or pregnancies, or cramping if the tech doesn’t drink enough water.  When he has a meltdown, and I am reeling and he is reeling, my primary concern should not be that she is cramping and blaming my son’s behavior for this.  I do not need to hear that she is going to the ER to get “checked out”, when the extent of my son’s aggression involved “ramming” her with his bike that still has training wheels (by the way, he is not capable of RAMMING, he is barely capable of forward movement while pedaling due to gross motor weakness- and I was standing right there, and that is NOT what happened).  

We signed up for ABA therapy- I went through MONTHS of fighting to get this therapy into place.  I can’t even express to you how stressful this has been at times, how many phone calls were made, how many times I broke down sobbing because I didn’t think I could make it happen.  So when my child is in the throes of behavioral issues that are part of an “extinction burst” of behavior brought on by increasing demands (which are actually positive things- in the long run anyway), I want to be able to worry about HIM.  Not how his practitioner will react, or whether it will be too stressful physically or emotionally for HER.  You don’t train to work in ABA and pretend this type of behavior is not going to happen.  This is the reason for DOING the therapy.  I am at a crossroads with this right now- I don’t want my son to miss any more therapy, but our house is already full of the drama that having two children with autism brings.  We don’t need added stress.  This therapy is supposed to help.  And help US- not give his practitioner a place to come to vent about her life.  I really feel that we need a new tech- again, but is asking for this going to make him miss MORE sessions?  He’s already missed so many because of our previous experience. 

Bottom line- this sucks. Oh and also?  BOUNDARIES PEOPLE.  Know them, respect them, don't overstep them.  

Development In Slow Motion

As parents, we celebrate all of our children's accomplishments.  In the beginning, with Jack, I was completely clueless.  He was such an early talker, and as a first time mom, I was oblivious to the fact that other kids weren't developing at the same rate- until I took him to playgroup, where he would want nothing to do with the other kids, but would talk "at" all of the adults in full sentences, at 18 months.  And the other moms would say things like, "excuse me while I go kill myself".  My little boy genius.  It took awhile for me to realize that he did not truly understand most of what he was saying.  To this day, scripting is a huge part of our lives, and people who don't know him too well say how brilliant he is.  Which he is.  But that's not why he is spouting those facts out rapid fire every day.  That is his comfort, his script.

Watching him learn how to read this past couple of years has been absolutely amazing.  I now have a different point of reference, Nate.  And watching Jack learn how to read is in many ways like watching him learn how to talk all over again.  I just have a whole different level of appreciation for my kids' accomplishments these days.

Nate's development, like many kids with moderate to severe autism, has been such a roller coaster.  Two steps forward, five steps back, another five steps back, four steps forward, and then freeze frame, repeat.  My level of fear far outweighs my need for hope at this point- to put it another way I am absolutely AFRAID to hope.

At some point though, you have to make a decision.  Are you going to live your life feeling this anxiety, or are you going to do everything you can to put that fear aside and allow yourself to enjoy these positive moments, however fleeting they may be?  Can you allow yourself to enjoy your child saying new words when you know they may never say them again, or they may disappear tomorrow?  Well, it's really really tough.  But you have to find a way.  Right?

I am trying really hard to do this.  When I first started this blog, I would jump on when Nate would start saying new words, and say things like "I hope this is it!"  Maybe you haven't noticed, but I have stopped doing this.  It's too scary.  It's never "it".  I don't think there is any such thing anymore.  I don't believe anyone who tells me Nate's speech is just going to "take off."  John and I sit and talk at night about how weird it would be to have Nate walk up to us and just start talking.  It would be freaky at this point (don't get me wrong, I would get over it)

He IS developing though.  He really is.  It's just in slow motion.  The accomplishments are things that with Jack, I never even noticed.  But they are there, and now I have to admit it.  It is absolutely fascinating.  For instance, Nate is obsessed with peek a boo right now.  And it's not the object permanence thing, it is the interaction piece.  He LOVES to see your reaction, to be surprised, to do it again and again.  This may seem like a small thing, but it is not.  It is Nate realizing his actions can have an impact, that he can affect his environment.  Yesterday he hid behind my bedroom door when it was time to go downstairs in the morning.  I found him laughing hysterically, hiding.  He knew he was going to surprise me and was anticipating it.  Now, he is super interested in doors- he stood in his bedroom this morning opening the door, looking behind it, closing it, getting down on his knees and looking under it.  It's like it's the first time he has ever realized the impact of a door, even though he has been opening and closing them for a long time.

Watching Nate finally notice his environment like this-  it's just crazy.  When Nate hits a milestone like this, my joy almost happens in reverse.  It's like- wait, oh my gosh, I never even realized he wasn't noticing this before.  I can't believe he wasn't noticing this before!  But wait, he is noticing it now!  And for now, that is enough.  

We Made It Through Christmas

We survived Christmas.  At home.  That is basically the best I can say.  This is the first time we have had Christmas at home in 3 yrs, since the year the boys were diagnosed.   We have been leaving and going to the Outer Banks- it was a good way to just change the setting, reduce stimulation for all of us, and escape the bad memories.  We decided we might be ready to stay home this year, see our family, try to create new memories.

Here is a flashback to two years ago:

Tonight John and I went to our marriage counseling session.  It's a very touchy time of year for many people, and we are certainly no exception.  As much as I am looking forward to Christmas, my mind is still somewhat stuck on where we were as a family last year- there is only one word that fits- reeling.  There was not one aspect of life that was stable.  We were still working on accepting the boys' diagnoses.  We were changing diets, initiating many new therapies.  Experiencing major financial strain related to the boys' medical needs.  And of course going through marital strife.  The thought of even celebrating Christmas last year was overwhelming- I know I just wanted to crawl under a rock and stay there.  

Alas, last year John and I were not nearly as wise as we are now.  We tried to make a nice holiday "for the kids".  I have come to realize that that phrase means nothing if mom and dad can't survive the experience.  The boys can not enjoy their holiday without us- they need us even more than most kids need their parents.  But rewind- we hadn't realized this yet.  And so we tried to keep up appearances, aka do everything the way we always had, including a long-winded dinner at a restaurant on Christmas Eve, church, and then hosting a big Christmas dinner at our house the next day.  Bad, bad, bad.  I preordered the boys' dinner at the restaurant to ensure it was gluten and dairy free, and the food was brought out basically right away when we got there- noone in the family ordered for an hour after that.  Result- meltdowns from both kids, picture Jack falling out of his chair multiple times, hands over ears, crying/yelling about all of the noises, Nathan banging his head on the table.  I carried him into the next room and put him down thinking maybe if he could walk around....he proceeded to lie down on the floor and bang his head some more.  We tried, we really really did.  The pressure was just too overwhelming- we left before dinner was served, we skipped church.  We went home and we both cried.  For our family, for the fact that we could no longer have a dinner out, for the feeling that no one in our families really understood what we were going through.

You would think that after this we would cry uncle for Christmas day.  But no, we pushed on.  We had a lovely Christmas morning, even had fun doing some of the cooking.  I will not even attempt to describe the rest of the day, so I will just say that it was one of the worst days I can remember- and a definite low point for our family.  I didn't feel like we could carry on at all after that point.

Yet here we are- stronger than ever.  We definitely learn something from every experience in our lives.  Well here is what I took from this- sometimes pretending is not ok, it's not the right thing to do.  There is no way to "protect" our extended families from our "new normal".  We can't do the same things anymore.  And to say that we were doing it for the kids is crap.  They certainly weren't enjoying the restaurant, they didn't give a hoot about a standing rib roast.  They would be happy with grilled cheese and chips.  Our marriage counselor described last year so concisely this evening.  He said that last year, we were like the violin players on the Titanic, who continued to play as the ship sank to give the other passengers a sense of comfort/normalcy.  It was torture for us, and did it help our families?  Not at all.  I am sure the violin playing did nothing for the passengers as they fell to their deaths either.  Did those violin players die?  Umm, pretty sure, yes.  So it didn't really work out for them either.  Sometimes, you just have to jump ship.  Circumstances change- accepting this is often the hardest thing to do.  

Accept it we have.  We are shaking things up this year big time.  We are having a Christmas that our family will enjoy- most importantly, one that will be good for the kids.  We are focusing on the progress and growth in our family- and we are acknowledging that what was good for us a few years ago is no longer ok.  We are being "us". 

Long story short, we weren’t ready to stay home.  Or at least, my husband and I weren’t.  It’s amazing how being in a setting where trauma has occurred can affect you.  Nothing bad happened, but I had extreme anxiety and depression throughout December.  It was almost immobilizing. 

I guess the positive is that nothing happened.  We made it through the day with no adverse events.  Other than the typical autism meltdowns, which would have happened no matter where we were.  I was in tears for quite a bit of the morning and just very shaky, went upstairs to try to calm down, and John followed me up the stairs and handed me a mimosa.  I am NOT a drinker.  But there are certain times in life--- well, let’s just say it helped.  It made the day more tolerable.   And I love him for knowing what I needed at that moment. 

We cooked a low key dinner, both sets of grandparents visited briefly, we played with new toys, and generally just spent quality time together.  I am not ready to entertain again- I am not sure I ever will be.  And I am not sure that we will try to stay home again next year.  I had no idea that I/we would feel this badly.  BUT we made it.  The boys had a good day- we had a delicious meal, and I know that all the grandparents were very happy to see the kids on Christmas day.  We still kept boundaries intact to protect our little bubble, but we didn’t have to shut everyone out to do it.  I guess we call that progress.