Staring up at the constellation Orion on a crisp winter's night, I wonder how much longer I can bear the pain. The pain of watching my husband cringe and suffer. While he can dull his chronic physical pain with medications, nothing can take the edge off the pain in my heart.
Millions of us are in the same boat. My own situation is pretty mild compared to many other caretakers. While suffering from a terminal lung disease, my husband can still walk and care for himself. For that we're very grateful.
But it's still damned hard. This is my story. The story of a wife who's also a caretaker. It's gritty. It's real. I hope it speaks for the millions of caretakers whose emotional pain is overlooked while their loved one's physical pain is treated.
But first, the backstory. There's always a backstory, isn't there?
I was raised to be a caretaker. There's no two ways about it. One of my earliest memories is worriedly studying my father's melancholy expression, hoping to see the glimmer of a smile. I was three.
Mother modeled codependence and taught it as a wifely virtue. At age seventeen, my own growing-up abruptly halted when my parent's relationship suddenly and inexplicably made home-life traumatic and chaotic. I was no longer the kid. My maturation stopped on a dime.
Now, I had a new role: Manager of Dad's constant depression. "We have to make Daddy happy and make him laugh," Mom said conspiratorially.
It's called parentification. The roles of parent and child are reversed.
Boy, did I work hard at my new role! In the words of Tallulah Bankhead, "Dawling, you have no idea what I'll do to get a laugh." It got to be a habit, an addiction. I lived for seeing the glimmer of a smile on Dad's face and the sound of his laugh. It felt like the approval I craved because he so sparingly dished it out based on my performance. To this day, laughter feels like love and I'm still something of a comedienne.
No sooner had I graduated college and landed a good job, when it all came crashing down. Inexplicable back pain stole Dad's mobility, his self-righteous pride and our familial superiority complex. At the age of forty-eight, he was diagnosed with non-Hodgkin's Lymphoma and rushed into emergency chemotherapy.
Suddenly, I found myself forced into the role of caretaker again. Caretaker, chauffeur, whipping boy, entertainer. I drove him to all of his chemotherapy appointments, sitting in the tiny chemo room for hours on end cracking jokes to enliven the dismal drip-drip-drip of chemicals into his veins.
But after these appointments, things didn't go so well. The chemotherapy drugs affected him like alcohol. Within two hours of each treatment, he turned into a mean, angry "drunk." And I was his whipping boy.
I particularly remember his vicious comment that I wasn't doing anything with my life. Now that's gratitude for ya! And then there was the time he angrily rewrote my profile on eHarmony. Yes! There are parents who actually do that! It's not just the stuff that comedy skits are made of.
For the next ten years, Dad continued to relapse every 18-24 months. I dutifully drove him to MRI scans, picked up his prescriptions (and a bottle or two of comfort nail polish for me), ran all his errands. This continued until he made the mistake of finally "allowing" me to move out at the age of thirty-one. But that's another story, for another time.
For a year, one blissful year, I basked in the hedonistic life of a single woman living alone. For the first time, the only person to take care of was myself! I could do exactly as I pleased. Take long hot baths. Stay up 'til all hours. Eat whatever I wanted, whenever I wanted. It was awesome!
But after a year, a fly crept into my ointment. I was lonely. I turned, rather hopelessly, to the (many) singles websites that had so pathetically disappointed me in the past. But again, my self-care was halted when Dad passed out behind the wheel of his truck from a Pulmonary Embolism and was rushed to hospital.
Two weeks later, I met Michael. Online of all places! We chatted a bit, then exchanged email addresses.
I have to give him credit. He's the most honest person I've ever met. In his very first email, he told me he was terminally ill with an ultra-rare lung disease even many doctors have never heard of. Pulmonary Alveolar Proteinosis (PAP). It's a killer.
In all honesty, my initial reaction was, "Well, another guy bites the dust." It wasn't the ideal situation I'd envisioned. But he was a supremely nice guy. Genuinely caring. Deeply serene. Unconditionally loving and affectionate. A former engineer. And I'm a sucker for an engineer. So we kept talking.
Two weeks later, I was head-over-heels in love. Talking to Michael gave me the most profound peace I'd ever experienced. This man was utterly compelling. I was obsessed with the thought of hugging him. It was all I could think about.
We finally met in person for our first (and only) date on April 7th, 2012 and it was the best hug of my life! A blissful day-long date interrupted by my jealous father calling to angrily order me home. Despite Dad's claims that I was "just infatuated," I joyfully (and secretly) accepted Michael's proposal of marriage on April 8th. We were married thirteen days later, burning rubber as we raced away from our wedding to start a glorious honeymoon touring the United States by car.
From the first day we met, Michael always had pain. Sometimes I lose track of everything that's wrong with him. Rheumatoid arthritis inflames his joints. Fibromyalgia makes his limbs ache and burn. Spinal stenosis causes wretched back pain, migraines, numbness. Sciatica manifests itself in a plethora of worrisome symptoms, prompting several panic-stricken midnight runs to the nearest hospital for fear he was having yet another heart attack. PAP adds the whir of the oxygen concentrator to the soundtrack of our lives. I learned to cheer each time Michael hacked, gagged and retched another glob of excessive protein out of his lungs, buying us more precious time together. Learned to navigate the world of online fundraising and networking, hoping against hope that kind people will help us afford a traveling oxygen concentrator and life-saving medical treatments. Michael was so nervous when he was featured on local television and radio!
I was ready for it all. Dad's cancer gave me a comfort level with illness, a confidence that I could handle Michael's illnesses too. My codependence prepared me to take responsibility and gave me empathy for his sufferings. A "fix-it" attitude. A foolish determination to find the non-existent cures for all that ails him. PAP didn't dissuade me from marrying him for a moment. Heck! I dove headlong into matrimony, determined that even if I was only "Mrs. Thompson" for one week, it was worth it!
Then came 2015 and months of watching Michael suffer extreme, inexplicable Level 10 pain over and above his "usual" pain threshold. He just couldn't get comfortable. While he attempted sleeping in his recliner, I fell into an exhausted sleep on the floor, jerking myself awake every few minutes to make sure he was still breathing.
Were the roles reversed, I would have allowed the Level 10 physical pain to make me nasty. Even a headache makes me snippy and cranky. To Michael's credit, he's mastered the art of suffering gracefully. Happy, positive, kind at all times. But after months of agony, even his iron-plated sangfroid was starting to slip. Granted, he was still nicer than most healthy people are on a daily basis. But there was an "edge" to his sweet personality. And, frankly, my desperate, codependent attempts to "fix" everything were more irritating than helpful.
But I kept the hurt and hopelessness to myself. Like a nurse, I've honed the fake cheerful bedside manner. I also tried to bite my tongue and not express my angst at having to do everything...all the housework, dog walking, errands on top of a busy writing career. But hey! It wasn't his fault, and I knew it was eating at him to be unable to even stand long enough to wash the dishes. He put away the clean dishes whenever the pain allowed, but walking our bichon frise puppy, Adele "Chicken Thigh" Thompson, resulted in a nasty fall on the ice when she jerked the leash. Hey! How can you expect an Obedience School drop-out to walk nicely on her leash!? It's like walking a fuzzy, excited tank!
A caretaker can only pretend to be resilient for a finite amount of time. It's called burnout. Happens to all professionals in caring professions at some point. Eventually, the truth must come out.
That's when I found myself staring up at a frosty Orion, dry-eyed, begging God to ease my pain too. Stifling my frustrated screams because this codependent caretaking wife was hurting so badly from watching her husband suffer, keeping the cheerful bedside manner firmly in place, rising above it all, not repaying crankiness with irritability, ignoring the sleep deprivation, the panicky twist in the gut, the workload. And not having anyone to talk to about it all, except the man who was himself suffering so much and already regretted "causing" his wife to hurt too.
I know God heard my scream, because a lovely Canadian doctor finally made the proper diagnosis. All the other doctors simply treated the pain and sent Michael home to suffer. The Level 10 pain has eased somewhat. Michael's back to the "usual" pain, like when we got married, although he still has "really bad days."
With the ease of his physical pain, the ache in my heart has softened too. The burnout has healed, although there are several more bottles of "comfort" nail polish added to the collection I started during Dad's chemo.
This is my story, to date. I don't have any answers or magic cures for the pain. But if you too are a caretaker, you're not alone. There are thousands of us out here, feeling your emotional suffering, validating your pain, praying for you, sending you hugs. Please...share your story in the comments section below and let's support each other!
We caretakers gotta' stick together!