Marriage and Caregiving Can Go Together

When I got married, I did not expect to get divorced.  That is probably what every divorced person says.  It’s almost funny.  It’s funny because it’s true.  I expected it to be hard.  I expected it to even be an ordeal at times.  I also expected it to be good.

So, what went wrong?

I don’t have any divorced friends.  I am the black sheep within my social circle now.  I’m also very private by nature so only a select few know the real truth behind my divorce–the reasons I ended it.

Domestic abuse.

I’ve been silent for a while on this blog because I’ve been active elsewhere, documenting the entire process.  It’s kept me sane.

That’s not what I’m here to discuss though.  I’m here to talk about how caring for children with special needs and/or disabilities can and will impact your marriage.  How it will distill your personalities and reveal the flaws and what you can do about it so that you become better, not run over in the process of caregiving.

My marriage was never great.  That should be stated.  It wasn’t even good.  It was middling.  We should never have had children together, and I don’t mean that in a regretful way.  What I mean is that children should be born into a family where they are equally desired by both parents.  In retrospect, I don’t think he wanted them or knew what it meant to be a father.  A good father anyway.  He was the distant, uninvolved father who worked, brought home the paycheck, and involved himself with them at his convenience.  He was Generation X’s Don Draper.

He also rarely involved himself with me in meaningful ways.  One of his favorite ways to spend time was sitting in bed together, parallel reading.  I had something different in mind when it came to spending time in bed together, but he was not generally up for that–unless I wasn’t.  Then suddenly he was.  There were always games afoot.  Psychological warfare.  These games made him the victim in our relationship and in his life.  I didn’t see it until our youngest daughter was born.

Milly was our first daughter to be diagnosed with anything.  She was diagnosed with an autism spectrum disorder and anxiety along with sensory processing disorder at 4 years-old.  She, however, came into this world an overwhelmed mess.  She did not sleep as an infant or toddler which meant that I didn’t sleep.  I was diagnosed with chronic migraine disease and fibromyalgia a little before her diagnosis all due to four years of sleep deprivation and the strain of caring for a young child with some kind of undiagnosed disorder.  That was when I started getting sick.  That was also when he started hiding–running away from parental responsibilities.  In the midst of my search for answers as to why our daughter screamed constantly, he yelled at me, saying, “You just want something to be wrong with her!”

Pause and observe this.  This is denial, and this is a common reaction in couples.  One person in the coupling usually denies or minimizes the child’s “issues” and, statistically speaking, it’s usually the father.  I don’t know why.  It’s a frightening proposition to be faced with.  A sick child.  The “what if” script starts: “What if…what if…what if…”  A natural response might be to run away and pretend that nothing is wrong.  Another reaction is to blame the partner.  They might be doing something to make the child behave that way.  Is it the day care? Is it the in-laws? Is it your faulty genetics? Blame comes on the heels of denial, but blame is simply the emission of anger and emotional discomfort aimed at a target.  We all do it.

It is in this moment, however, when those first wedges are driven into relationships.  When one parent is seeking answers to help a potentially sick child while the other denies and shifts the blame.  This is what sets the stage for marital discord down the road.  Why? It erodes trust, and trust is the currency in all relationships.  In close relationships, I have to know that you have my back, and you must know that I have yours.  When your child is potentially ill and in need of help, that is the moment to come together and share fears.  So when one partner uses the other for target practice, that is a betrayal of that most sacred trust.  It is a form of abandonment within the relationship not to mention one partner has just left the other partner to figure out the problems all on their own.  The relationship was temporarily sacrificed as a coping strategy.

What happens from there? The abandoned partner usually begins remembering all the other times they were abandoned by their mate.  It’s a gestalt experience.  And the seeds of discord have not only been sown but are now being fertilized.  Depending upon emotional maturity, character development, and past issues with one’s family of origin, a person can either get past this or not.  I’ve seen this dynamic play out within other relationships wherein there were children in the middle of receiving a diagnosis, and it definitely played out within my own marriage.  It was a devastating experience.  As the primary caregiver, it caused feelings of isolation, anxiety, and fear, and I didn’t know who to turn to.  My spouse wasn’t on the list because he removed himself.  As far as he was concerned, his kid was fine, and, if his kid was fine, then I was fine, too.

Then, Grace got sick.  There’s nothing like a psychotic episode to wake a person from their oblivious slumber.  His denial reigned supreme.  Wash, rinse, repeat.

Eadaoin hit puberty and bipolar disorder came to the surface.  It was like someone signed us up for some kind of nightmare roller coaster ride, and we couldn’t get off.  I was barely holding it together, and I kept looking to him for some kind of support.  Anything.  He just locked himself away in our bedroom which he had turned into his office.  I had nowhere to go.  I thought that if we could maintain some kind of connection–any kind–maybe we could rely on each other for something.  I pushed for sexual connection.  That’s when the worst of the domestic abuse started.  Clearly, he didn’t want to be involved in anything.  We were on our own.

A year after I had corrective surgery on a hip injury he caused I called it: “I think it’s over.”

He agreed.

So, what is to be learned here?

  1. Always put on your oxygen mask first.  What does this mean? Tend to your stuff! If that means going to therapy, then go.  If that means going to the doctor for a physical, then go.  If that means joining a gym and getting in shape, then go.  If that means changing jobs, then do it.  There is only one you, and, if you are a caregiver, then someone really needs you.  Take care of yourself so that you can be present.  More than that, if you are in a long-term relationship, then be the person who you would want to be in a relationship with.  I can’t emphasize that point enough.  Someone chose you.  They met you, liked you, and then fell in love.  With you.  They decided that they wanted to spend their life with you.  That’s a very big deal.  Never forget that they can always change their mind should you suddenly become a total dick.  I’m being frank here because it needs to be said.  We must always be developing our character and maturing our personality as well as taking care of our bodies so that we can rise to the circumstances that life throws our way.  This is why you must, must, must make your health, well-being, and ontological state a priority.
  2. Assess the state of your relationships.  Doing a survey of how you are doing in your relationships is key to developing your character as well as addressing bad habits that naturally develop over time.  Are you known for anything in particular by your friends and family? Are you the person who loses their temper? Well, get on that.  It’s time to be known for something better.  Are you always late? For everything? Develop your empathy and address that shortcoming.  Doing an honest personal inventory of who you are now vs. who you would like to be is a courageous and valuable thing to do.  It sets a course and provides a spark of momentum.  It’s intentional and says to the important people in your life, “You matter to me.  I know that I affect you.  I want to do better by being better.”
  3. Make amends.  This is a hard one, but it goes a long way.  Talk to the people in your life.  Had my ex-husband and I actually discussed past hurts in a meaningful way and combined them with a plan to heal the wounds (this is accountability), there might be less pain today.  He was never able to engage me in any kind of emotional discussion.  Nothing was ever addressed.  So, I was never able to hold him accountable for anything.  In the end, I was blamed for my own abuse.
  4. Grow up.  I know many people who hold onto childhood dreams of what family and marriage should look like.  They insist on keeping certain traditions alive because they find it personally fulfilling, but it hurts their family relationships.  When you have children with special needs, nothing in your life will ever be all-or-nothing again.  Everything will become about compromising, and you will take the hits.  This will feel painful to you.  I guarantee that.  You will have a moment, at least one, when you step back and look at the landscape of your life, and it will feel utterly unfamiliar to you.  This feeling of depersonalization often ushers in the experience of grief.  It’s at this moment when you feel just how hard it all is.  How much you have lost.  Just be honest with yourself and let it flow.  It’s okay.  You can see the good in the child or children you love while feeling hurt and betrayed at the same time.  That’s the dialectic of caregiving.
  5. Do a proper grief work.  If you do a proper grief work together, sharing your experiences with each other, then you will grow closer.  Ordeal is one of the best bonding experiences.  My ex-husband never went to the hospital with Grace and me.  He never went to an appointment.  He never went to the Behavioral Health ER either.  You know who did? Girlfriends.  Do you know who I am close to now? Girlfriends.  My girlfriends and I remember those early days of the disease onset, and we can even laugh about it as macabre as that sounds.  We were scared together.  They loved Grace, too.  So, I grieved with them instead of with my husband since he never left the bedroom.
  6. Stick together.  Above all, be a couple.  You were together before you had children.  Don’t ever forget that.  Find at least one thing that makes you feel connected and commit yourselves to it.  Never give that up.  If it’s sex, then have sex often.  If it’s hiking, then hike as often as you can.  If it’s watching sports together or playing sports together, then get out there and do it.  Protect your relationship fiercely.  Do not let in-laws tread upon it no matter how well-meaning they are.  This is your relationship.  Make it the number one priority in your life.  Even above your kids.

This is what I have learned after nineteen and half years of marriage and nine months of separation with a pending divorce.  I have never been someone to look to statistics for answers.  Of course, now I am a statistic.  You don’t have to be.

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A Meditation

I was pondering the state of the union last night (i.e. thinking about my marriage).  This blog covers a lot of ground.  Keeping the magic alive is easier when you aren’t caregiving.  I’ll be honest.  Caregiving sounds almost pleasant.  Even when I think about caregiving, I picture bringing a piece of pie to my grandmother.  That’s what the word conjures in my imagination.

Say the word ‘caregiver’, and I see myself offering gentle care to quietly needy people.  Or, nurses offering water to patients.  Or even mothers and their young children–the primary caregivers.  These images are not congruent with reality when it comes to giving care to an individual with mental illness.  I don’t know what life is like for someone else.  I can only speak for myself.  Mental illness is a game changer.  A permanent mental health illness diagnosis like schizophrenia is a life changer for everyone.  Schizophrenia diagnosed in a child? Our entire family has been changed by Grace’s diagnosis.  Doireann’s personal essay for college entry was about how her life and Weltanschauung had changed since schizophrenia entered our family.  She, too, has been a caregiver.  Eadaoin has been a caregiver.  Even Milly has been a caregiver.

We have all had to learn to offer care to Grace despite our own abilities in the moment or even desires.  We’ve all had to give things up.  Caregiving becomes 24/7, or, at least one parent has to step into that primary role.  That’s me.  I am the case manager, caregiver, and on-call emergency contact at all times.  I can makes plans, but those plans are subject to cancellation at all times.  There is no family to call for back-up.  My husband is my back-up, and if he’s out-of-town or unavailable…

A few years of this creates bone-deep exhaustion, and my husband and I just want to lie down and vegetate.  We’ve achieved something spectacular if our feet touch.  “Oh look, our toes are touching!”  It takes concentrated effort to make knees touch.  Caregiving is exhausting when you’re the therapist, the case manager, the heavy, the parent, and the end all and be all for a vulnerable person.  It’s even harder when there are others standing in line behind that person who need you, too.

But, this is life.  How do we make our circumstances work for us to propel us forward rather than oppress us? This is a question that I ask often.  Not everyone cares for a mentally ill child or even a child with special needs, but everyone has a battle to fight.  Everyone.  Every single person with whom you cross paths has a personal dragon to slay.  Some have more than one.  Some people’s lives are overrun.  In any case, this is what makes humans alike–suffering.  Your station, race, gender, religion, sexual orientation, and anything else don’t preclude you from suffering.  In this, we can all come together and agree.

The view I have chosen to take then is one of personal development.  It’s easier to see it in my children than in myself.  My daughters are now keenly aware of the mistreatment of others particularly those who are vulnerable.  Doireann, who learns empathy through experience, is now almost ferocious when others make ignorant remarks about mental illness.  She has made it her goal in life to educate others admitting that she was once a person who knew nothing about mental illness.  Eadaoin has always been sensitive to social exclusion, but she is far bolder now with her friends if they mistreat a peer in school with special needs.  She goes out of her way to befriend and express affection to her special needs peers, educating her friends and acquaintances on how to treat everyone.  Milly is the biggest surprise to me.  Milly has begun to defend her special needs peers at school.  Elementary school is very difficult socially for anyone who is different.  It is not uncommon to see children running away from a child with Down’s Syndrome yelling, “Monster!” Something like this happened in front of Milly, and she scolded her neurotypical classmates explaining that all special needs children were just like they were.  They just had different needs.  It was wrong to mistreat them, and then she played with one of these children during recess.  She explained to me that one of her friends apologized for making fun of a particular child and never did it again.

Compassion.  This is the fruit of suffering.  There is really no other way to learn it.  Empathy is the ability to put yourself in another’s shoes.  Compassion is the drive to do something about what you feel after you’ve done so.  It is active.  It is never passive.  Suffering and ordeal grow compassion in us.  When we can approach our painful circumstances through the lens of character development rather than a “Why me?” paradigm, then we are far more empowered to move forward rather than stagnate.  The members of our family who are as affected by those circumstances can learn to see themselves as empowered as well.  Suffering can be looked upon differently–a portal to greater understanding, kindness, patience, and personality development.  We can’t really give that to our children.  Life develops that in us, but we can frame it for them so that they can see it more quickly in themselves and others so that ordeal becomes valuable rather than loathed.

If we are looking for opportunities to become better and more mature with a better developed character, then suffering is your gateway into that process of development.  This is what I’ve learned.  Resisting that process leads to more suffering.  Embracing it and going with the flow quickens our development leading us to the most unlikely place.  Gratitude.

At some point, we will actually be grateful for the events that we once tried to escape.

Life is so brilliantly odd that way.

 

 

Living The Dream

Life is a strange, circuitous road sometimes full of detours, cul-de-sacs, pit stops, and unexpected turns.  Just when you think that you know where you’re going, something happens.  The car breaks down.  The road is closed.  You find out that Google Maps was wrong, all wrong! You should have taken that left turn at Albuquerque.

Sometimes you just have to go with the flow even if you don’t like where the flow is going.

I always think I’m going with the flow until the flow fights me.  It is then that I realize that I’m trying so very hard to push the river.  That seldom works out.  Have you ever tried to push a river? You drown.  So, I metaphorically relaxed into the circumstantial flow and went with it as much as I could.  This is not me.  I fight.  I push.  I fix.  I am the embodiment of ambition at times.  I have to be.  It’s how you get things done.  It’s impossible to care for a child on the schizophrenia spectrum with no ambition while compensating for a spouse who is completely avoidant.

It isn’t sustainable.  This is what my therapist told me last winter.  I would not be able to sustain that level of energy expenditure or a relationship longterm.  My response? I have to.  If I don’t, then who will?

She predicted I would become ill.  She predicted that my marriage would fall apart.  She was right.  In the midst of all these revelations, however, I think I can almost feel gratitude.  It had to stop.  What fills in the gap then?  The overcompensation had to end to be sure, but what does one do with that information? Life has a way of forcing solutions sometimes.

Eadaoin’s therapist called me yesterday.  She is referring Milly to the crisis stabilization program.  Jane will be back in our house again.  Both Grace and Eadaoin have used that program in the past.  It allows for immediate in-home access to mental health services and a fast track to psychiatric services.

Milly has an anxiety disorder in addition to an autism spectrum disorder and sensory processing disorder.  She is not doing well.  She has been writing me letters daily expressing her anxious thoughts and waking up in the morning saying, “Sometimes I wonder if it would be easier to die so that I wouldn’t have to feel so anxious.”  Grace has been picking fights with Milly daily because she can’t self-direct.  Grace really needs day programming in the summer, but there is none.  Summer is unpleasant in our house.  We have a lot of mental health needs, and I can’t cover it all alone.  So, I do a lot of behavior management, and Milly is losing her ability to cope with Grace’s behavior.  I don’t blame her.  There are days I’m there as well.

During this phone call, Eadaoin’s therapist was honest.  She indicated that it was time to throw a lot of resources at our family, in part, because I had been the sole therapist and case manager for too long, and we needed support.  I didn’t have to manage a child with schizophrenia, a child with autism, and a teen with a mood disorder on my own in addition to a new health diagnosis.  She kindly mentioned my husband as well.  “You are not alone in this.”

I want to believe that.  These past few years have been indescribably difficult, and they didn’t have to be as hard as they were.  Had I had a partner in this, the journey would have been far more meaningful and so much less isolating, but, at the same time, I’ve shared this with friends.  Bonds have been formed indeed.  Unfortunately, they have not been formed with the right person.  We deepen our connections with others through ordeal.  We also lose those connections through ordeal.  It all depends on what happens during those trials.  Do we draw near or isolate? Life is predictable, however, in that it will always provide us with opportunities to try again.  Circumstances are always fresh with ordeals, great and small.  We will always have another chance to try again and put into practice what we learned.

Such is the case presently.  I have another chance to practice self-care.  My husband has another chance to practice being a partner.  I begin another little jaunt with a bit of a limp because I have a flair for the dramatic.  Next Monday, I have the profound pleasure of having a local anesthetic injected into my right hip joint.  It sounds terribly exciting, I know.  You are all lining up behind me to experience what is sure to be some kind of euphoric bliss.  Should, as my Scandinavian orthopedic surgeon said, the angels sing and I feel no hip pain after said injection, I have to have hip surgery! Clearly, I am the female equivalent of Rip Van Winkle.  I have aged thirty years in six months since I have a hip injury and no clear idea as to how I achieved it.

So, in the name of self-care, I have already lined up someone to clean my house because I really have lain in bed and dreamed that my whole house was clean.  As Doireann said yesterday after I received my estimate, “I feel like this is your wet dream, Mom.  Having someone come and clean your house.  Yeah, you should totally do this.”

It is my wet dream! So, I’m starting there.  My husband has his first intake appointment ever on Thursday (Mwahahahahahahahha!) with his new therapist.  Milly will be getting some much needed services.  Eadaoin is still chipping away at DBT.  Grace is immersed in her services.  Doireann is processing her life experiences, and, apparently, I will be reaching the heights of pleasure while watching someone else clean my house while I wait to find out the fate of my hip.

I’d say that’s a typical summer for us…

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A Confession

I have been silent.  I haven’t meant to be.  I love blogging.  I have been trying to find my voice.  I didn’t lose it.  I just found all my energies drawn into other places.

I was diagnosed with Lupus.  All the testing was completed.  It takes time.  I’ve been very tired.  I’m not surprised.

I injured my hip.  I feel elderly just admitting that.  Limping around the house and about town has gotten old.  I had an MRI last Friday.  My lovely rheumatologist will call me with the results.  There’s nothing like a hip injury and a Lupus diagnosis at the same time to make one feel terribly mortal.

This is not what is emotionally exsanguinating me.  It’s something else that I don’t speak about here.

It’s my husband.  I’m not sure why we silo off our lives as we do.  Is it because we fear telling the whole truth as if somehow that will make it all the more real? Is it shame? Do we become so familiar with patterns of behavior that we normalize them? Is it all of the above?

My husband is very passive aggressive and avoidant.  Since Grace’s diagnosis two years ago, it has reached epic proportions.  It has become punishing.  I have overcompensated for this for as long as we’ve been married.  I thought that if I tried harder, made excuses for it, lost weight, gained weight, looked prettier, kept a perfect house, made perfect meals, left him alone, let him do whatever he wanted, justified his behaviors, explained them to the kids, or ________ (fill in the blank) that he would get better.  He would change.  He was just tired.  He had worked hard.  He just needed something else.  More time alone.  More space.  More of something that he wasn’t getting, and I made it my goal to find it, get it, and provide it.  Essentially, I enabled it.

I tried every sort of communication that I knew.  He only said that no matter what he did he just couldn’t make me happy.  It was my fault.  So, I swallowed it.  I didn’t ask for anything.  I stayed out of the way, but I couldn’t stay quiet when he directed it at the girls.  I wouldn’t do that.  And, looking back, I can see the cycle.  He withdrew.  He punished.  I tried harder.

Doireann told me last week that I could stop overcompensating for him.  She knew what I was doing, and she could see what it was doing to me.  She knew that I was sick because of him.  I was shocked.  All this time I’ve been trying to keep it under wraps.  She knew? She told me that she didn’t want him to die, but, if she had to choose, he could.  She really just needed me.  Our family would be fine without him.  I was stunned into silence.  “What does he do around here outside of working anyway?” she nonchalantly asked.

I took Eadaoin to see her psychiatrist last Friday.  Eadaoin has been cutting again, and her psychiatrist wanted to talk about it.  She wanted to dig deeper into the issues behind the cutting.  She mentioned that some of the deeper seated issues behind cutting are often rejection and abandonment.  Eadaoin was silent.  She didn’t want to talk about it.  I mentioned her dad.  We talked about it anyway.  Her psychiatrist talked to me.  It became a family session.  We were there for an hour.  I wanted to protect Eadaoin.  I didn’t want her to know just how deep this issue really went for me.  Her psychiatrist told Eadaoin to continue to develop insight into her motivation for cutting.  She then turned to me and said, “You don’t have a relationship.  That’s not what you have there.”  I just quietly said, “I know.”

On the way home, Eadaoin said, “You can stop explaining away what he does. I’m done with him anyway.  He’s ignored me my whole life.  I’ve got you.  That’s enough.”

And then she came home and threw up in the kitchen sink.  She was so sick to her stomach what with having discussed her dad with her psychiatrist.

Grace asked me yesterday if it was her fault that her dad was always in our bedroom.  She wondered what he did in there all the time.

Sometimes life moves slowly.  Sometimes it comes at you so fast that you can’t keep up.  I’m not keeping up right now.  I have always known that something was wrong.  I think that I’ve always believed that the problem was me because that’s what I’ve been told.

  • You expect too much.
  • You’re broken because of your past.
  • I try so hard and nothing is good enough for you.

I just realized that it’s not me, and three of my daughters are coming forward separately at the same time confessing the same things.  We are not crazy.  It’s not us.

It’s hard to talk about difficult things.  I know this.  I’ve lived with this for a very long time.  I feel like I’m walking on ever-shifting ground.  I don’t know what to expect.  I’m very anxious.

There are resources.  I’m starting here.  My first line of defense is always to educate myself.  I cannot fix him or make him change, but I can change what I’m doing.  I have played a role in this.

I am certainly not the first person dealing with caregiving to come forward with the, “OMG! My marriage is falling apart!” This is the reality of experiencing high pressure within a relationship.  If there were problems there before that were flying under the radar, then you can bet they won’t stay unnoticed for long once a life-altering illness enters the scene.  You simply can’t overcompensate for a spouse once you are forced to do so for an ill child.

You will end up with an autoimmune disease.

So, here are some resources in case passive aggressive personality issues are at play in your neck of the woods:

Do you know what the good news is here? I know a shitload of mental health professionals now.  All I have to do is pick up the phone.  I know that, in this sense, I’m not alone in this situation.  I know where to go if I need help.  And, I’m pretty certain that I will need some help getting my head screwed on straight at some point in the near future.