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. 

 

Depression, Anxiety, and the Autism Parent

I read many autism blogs at this point- the autism "blogosphere" is very much so a community and I like to keep up with certain families.  I read blogs by both moms and dads and something struck me the other day.  In both of the autism dad blogs that I read, the dads are very up front about the fact that they suffer from depression.  They are both on antidepressants and don't hesitate to talk about it.  I have not seen many autism moms discuss this, which doesn't mean that it hasn't happened, I just haven't seen it.

Why aren't we talking about this more?  Because guess what?  I AM depressed, and I have been for quite a long time.  I know my husband experiences depression as well.  I know my autism mom friends are depressed.  Hell, I was having a horrible anxiety attack last winter, and one of my mama friends offered to pop by with some ativan.  It's just like that.  There are multiple studies and a bazillion articles about it:

http://www.ncbi.nlm.nih.gov/pubmed/23291799
Autism is associated with burden and stress for parents/caregivers of the affected child. The demands placed by the disability contribute to a higher overall incidence of depression and anxiety among parents/caregivers.

http://www.iancommunity.org/cs/articles/parental_depression

Most parents of children with disabilities or chronic health problems suffer a great deal of stress. There is evidence, however, that parents of children on the autism spectrum suffer the most stress of all. ¹There are several reasons why the stress of those parenting children with an autism spectrum disorder (ASD) is so high. All parents of children with disabilities must cope with grief, worries about the future, and the struggle to find and obtain appropriate services. Parents of children with ASDs face some additional stressors. First, they often live with uncertainty about what caused their child’s autism, as well as possible guilt (no matter how undeserved) over whether they did or failed to do something that led to their child's ASD.  Second, the core disability associated with ASDs is a social one. Most parents hope for a warm and loving relationship with their child. It is bewildering to find you have a baby who does not like to be held, or a child who will not look into your eyes. Parents adapt, learning to love the way their child loves, but usually not without having passed through some confusion and pain.  Third, no matter what their specific ASD diagnosis or IQ, children on the autism spectrum often have problem behaviors, from refusal to sleep to intense and frequent tantrums to extreme rigidity. These behaviors can make living with them day-to-day very trying and lead to another variety of guilt: the kind you experience when you are not feeling loving toward a difficult child. In addition, such behaviors strain the entire family, impacting sibling relationships and marriages.

http://www.autism.com/parent_stress

http://autism.lovetoknow.com/Impact_on_Families_of_Autistic_Children

Autism is an emotional roller coaster ride that begins before diagnosis and continues throughout life. According to a study published in the journalPediatrics, mothers of children on the autism spectrum frequently rated their mental health status as "poor" or "fair." They had a much higher stress level than the general population.

In addition to the higher stress level, many parents of children with autism experience the following emotions:

• Feelings of being overwhelmed
• Relief at having a name for the challenges their child faces
• Anger at their spouse, the doctors, or themselves
• Resentment of the child and guilt for that resentment
• Despair at the incurable nature of the disorder
• Guilt that something they did may have caused their child's challenges
• Frustration that the parenting experience they have is not what they envisioned
• Feelings of social isolation
• Embarrassment at child's behavior in public

Physical Impact

Autism also has an indirect impact on the physical health of family members. Anxiety, depression, and exhaustion all take a toll on the physical health of families with children on the autism spectrum. Stress can lead to lowered immunity, and sleep deprivation may result in difficulty concentrating, memory impairment, and other health complications.

http://www.ijdcr.ca/VOL07_01_CAN/articles/benson.shtml  This one describes our family right after diagnosis to a T:

Parenting a child with ASD requires an inordinate amount of time and energy and may have detrimental effects on marital relations (Piven, Chase, Landa, & Wzorek, 1991), attention devoted to other children in the family (Holroyd, Brown, Wikler, & Simmons, 1975) and career opportunities for caregivers (Gray, 2002). Parents may find themselves withdrawing from social relationships and recreational and community events (Boyd, 2002; Sanders & Morgan, 1997), the very activities that may serve to buffer the stress associated with caring for their child.

The literature suggests that certain resources reduce the stress parents experience in caring for their child with ASD. Financial support has been reported by parents to be among the most influential resource for reducing stress (Dunlap & Fox, 1996; Freedman & Boyer, 2000). Adequate funds allow caregivers to enroll their children in interventions that most appropriately target their children's needs and enable the parents to purchase respite care as needed (DeMyer & Goldberg, 1983; Freedman & Boyer, 2000). Support of one's spouse and relatives has also been associated with lower level of parental stress 

I could go on and on and on....I won't, but do me a solid- please click on at least two of these links, especially if you do NOT have a child with autism, or if you have a family member who has a child with autism.  It is so important to understand that this issue is very common- this is based on large, legitimate studies (even NIH tackled this one).  The stigma has to go- the issues we deal with on a day to day basis are not typical and it is not surprising at all that we are depressed and/or anxious.  It would be really weird if we weren't!!!

Honestly, when I was having extreme anxiety a few months ago I went to one of the practitioner's in my PCP's office who I don't normally see- I told him I was feeling really anxious, and he asked me what was going on.  I started my story, I have two sons, both on the autism spectrum, I work full time... he stopped me.  Shushed me really.  And told me he would give me a prescription for xanax.  Oooookay.  I mean that's fine, but then I looked at the script and the man wrote me for 80!!!!  Seriously- what does this say to you?  Your life sucks.  It is not going to get better.  Don't bug me.  OK, well that's what it said to me.  Who the hell prescribes 80 pills to someone who doesn't normally take a controlled substance?  And how much could I have gotten for it on the black market?  Kidding, kind of, autism therapies are really expensive in case you haven't heard.

I just felt like he was saying, ummm, yeah, this is expected, don't look for it to get better.  Not really the best bedside manner in my opinion.  Luckily, the anxiety eased up, and I have been ok.  I have also talked about my migraines here in the past.  I finally made it to the neurologist about a month ago.  When he asked about my stressers (yes, I snorted), he of course said, well duh, of course you have a headache.  What's with these practitioners- I feel like my health is being written off because of my kids' conditions.  I mean, I get it, I should have some headaches, but 20 days a month?  He agreed, not ok and we tried a maintenance medication, which also happened to be an antidepressant- effexor.  I will tell you, I have been on wellbutrin for several years now for my depression (I know, you are shocked, right?)- and we decreased this when we added the effexor.  This mama has been a freaking mess- and as an added bonus, effexor gave me heart palpitations- I couldn't get to a therapeutic dosage for migraine prophylaxis because every time I attempted to increase like I was supposed to, it felt like my heart was literally in my throat. And my depression has been much worse.  Enough of that.  Unfortunately, because I live the life I do, there is no good time to be a mess.  I mean in the past month, we lost a pet, I attended the birth of an amazing new family member, Jack had surgery, we had many appointments, I have been trying to cope with a very complex new treatment plan for the boys, apply for the stinking DDA wait list in 5 days or less, secure funding for the boys' summer care....you know, the usual.  But this month I find myself crying in a corner at the end of the day.  That's not acceptable.  And it annoys the crap out of me that it happened because I was finally making the time to address my headaches, which are also debilitating just in a different (easier to manage if you can believe that) way.

I guess my point is that it is really important for all autism parents to be open with each other about their struggles with depression and anxiety.  I think it's imperative that we know we are not alone, but I also think it's vital that those around us know that we are experiencing this stress (and apparently we need to educate OUR practitioners).  It is a big deal, and we all need help.  I think it's our responsibility as parents really, to address our depression, with whatever means necessary.  Whether it's therapy, medication, or both.  We are literally trying to move mountains for our kiddos on a daily basis- we need to be at our best.  We owe it to our kids to be at our best.  When the boys were early in their autism journeys, John and I would use the excuse that we had no time for marriage counseling.  How much pain and time could we have saved if we had made the time right from the start?  Right?

Feeling depressed, in any setting, but especially in these circumstances, is nothing to be ashamed of.  It's nothing that needs to be hidden.  But it does need to be dealt with.  Our kids need us.