The dangers of caregiving for those you love
We’d been married twenty years when she developed an autoimmune disorder that led to interstitial cystitis (a painful urinary bladder disorder) followed by vulvodynia and fibromyalgia, and she became a case study at Boston’s Brigham & Women’s Hospital for a triple-board certified physician who looked like Benjamin Franklin.
She lived with crippling pain. She vomited from the pain. Many days, she had a hard time walking. She ate prednisone as if they were Skittles. Sex became too painful and was never again part of our relationship. She generally grew anxious and battled panic attacks.
Ten years later, after thirty years of marriage, I stopped hoping to get back the woman I married, and I filed for divorce. I left behind an anxiety-filled, dependent woman, and I walked away in search of self-esteem and self-worth.
Maybe it didn’t have to end that way. But my love for her, coupled with my mismanaged caregiving made sure it did.
Our two daughters were ten and twelve when it began. I worked in a startup with mounting responsibilities. We had no family that could help with daily living. The oldest daughter who fought an anxiety disorder grew worse, and the younger one turned into the caregiver for both her mother and sister when I wasn’t there.
The kids were smart, and eventually, I sent them off to boarding schools to get them away from the stress that only worsened each day, month, and year. And I was left to figure out how to care for my wife.
I intended to help her. Isn’t that what marriage is all about? Through better or worse?
I cooked 95% of the meals, did 95% of the grocery shopping, cleaned the house. I located medical specialists, read about holistic medicine, and developed goals and plans for possible treatments to discuss with doctors.
I coordinated schedules with the girls so we could visit them, attend their school events, and bring them home once in a while for a weekend.
She called me at work several times a day about inconsequential things like locating AA batteries, how to work the TV remote and reminders for the grocery store.
I nudged my business travel around her appointments and having to cancel at the last minute because her disorders flared or a panic attack set in wasn’t uncommon.
She wore her pain and disorders on her sleeve. If you met her, it wouldn’t take a minute before she launched into the list of her medical problems and treatments. Whenever I broached her growing victim mentality, she became bitter and refused to admit that she had a problem.
As the years went by, her daily pain symptoms became more manageable. She began having more “better” days than bad ones. We managed to do things as a couple. We went to the movies, plays, and the symphony. We went out for dinner at least once a week and took long walks.
But our conversations revolved around two things: our daughters’ lives and her chronic disorders.
Her medical care wove into the fabric of who we were as a couple.
I began doing more and more by myself. I started writing again, joined a writer’s workshop, and met new people. Every week, I’d stop for a happy hour at a favorite bar-restaurant.
I needed to be around ordinary people. Normal conversation. A place where I didn’t have to talk about or deal with her problems.
It was during our twenty-seventh year when I knew that I couldn’t stay. The problem now was how to leave.
How do I walk out on a chronically ill wife after dedicating years of my life?
I had raised the topic of mental health counseling many times in recent years, and she refused. Finally, I decided to seek my own.
Two years of therapy
Therapy, for me, was a rude awakening. Up until then, I only saw myself sacrificing to help her. Not me holding her down long enough that I killed any chance of ever seeing the woman I married.
Initially, my primary caregiving may have been appropriate, but I learned that as the situation continued down the path of me being Mr. Super Spouse, I enabled our lives to play out the way it did.
Enabling can be a good thing. It’s good to help a friend perform a task that’s a struggle. It’s good to show him a new way to complete the job so that next time, he can do it.
It’s terrible when it perpetuates the behavior of dependency. For example, after you enable a friend to complete a task, he calls you again and again for help on other things. If you love that person and know that they have no other place or person to turn for help, what do you do? If it’s your spouse, what can you do?
Enabling became the tool that I used to manage a challenging and, otherwise, unmanageable situation. And, the ability to control provided a sense of self-esteem from which I drew self-worth.
As the enabler, I became as dependent on the enabling relationship as she.
Waiting too long to leave
The final hurdle was the gripping fear of what would happen to her after I left.
I struggled with the fact that I wouldn’t be able to look back when I knew that for her, it would be like falling off a cliff. And I would have to keep walking and stay away for both of us to break co-dependency.
After I announced that I was leaving, it took days for me to get out of the house. She cried for hours and hung onto me like a toddler while I packed clothes and loaded the car. But it was also me, fighting back the doubts of whether causing all this pain and grief was worth it. I finally drove away.
She was hospitalized two days later after a series of panic attacks
My daughters pleaded with me to return to be with their mother while she was hospitalized (both daughters lived in other time zones and had their own responsibilities).
I said “no.”
For weeks, every evening I sat in my new apartment sipping vodka and let the room go dark as the sun went down and then sat for hours longer thinking about what I had done.
Could things have turned out different?
No matter what I did, maybe the ending would have been the same. But I’ll never know. What I do know is that enabling killed any chance of us coming out whole.
The worst thing I did was not seek counseling on how to deal with the situation.
When her medical issues were becoming manageable, I needed to let go and begin handing back responsibilities. Getting professional advice may have helped me to figure out when to do that and how to go about it. And, could I have coaxed her into counseling when the medical issues first began versus trying years later?
The worst thing that I did for either of us was not leaving during those early years once it started sliding out of control.
If I had sought counseling much sooner, I would not have lingered in the marriage. If she wasn’t willing to enter counseling and take advice to combat the victim mentality that was strangling her and our relationship, what the hell was I doing there?
The longer I tried to keep things afloat, the harder it was to tread water. The longer I stayed further ingrained our codependency.
The only thing I did right was to say “no.”
When she ended up in the hospital, the impulse to jump in the car and race back was overwhelming. But I didn’t.
However, that decision silenced the relationship with my daughters for several years, and my wife’s family turned vindictive.
I don’t remember our last conversation. Only the email I got six months after our divorce. She said that her therapist told her it was best if she didn’t see or talk to me. That was six years ago.
Two years later, I found out through my attorney that she got a job as a teaching assistant to kids with disabilities.
My daughters and I began working on our relationship. It took several years to progress from a few phone calls and lengthy emails to spending Christmas with them in 2017. Today, things feel back to normal.
They tell me that their mother has changed a great deal and seems like a different person, and one, they don’t ever quite remember. And I’m left to wonder whether I would remember.
As for me, I did the manly thing of rebounding into a relationship with a woman fifteen years younger. The terrible ending of that coincided with a failed startup. It’s been two years of living in solitude and reflection, and I’m beginning to thrive once again.