This is for you, the husband watching his wife in the last throes of dementia. It’s for you, the mother watching her six-year-old so weakened by chemotherapy that he can’t even open a door. It’s for the soldier’s wife, watching her patriotic hero husband suffer constantly from…what!? It’s for you. It’s for me. The caregivers who watch their loved one suffer, day in and day out, almost wishing we could take their physical pain — because the emotional pain of watching them suffer almost seems to hurt worse.

When I was seventeen, I decided several important things. Among them was the design of my future wedding band and my lifelong favorite song. I’m wearing that wedding band today and Andrew Lloyd Weber’s  Love Changes Everything is still my favorite song. The lyrics in the second verse say, “Love: Love changes everything, pain is deeper, words mean more.” I never knew how true that was until, fifteen years later, at the age of (almost) thirty-two, I fell in love with Michael, a man who hurts. All the time. Every day. Sometimes more, sometimes less. His body just hurts and hurts and hurts.

Now, before we go any further, you really must listen to this version of Love Changes Everything sung by another Michael, Michael Ball, to give this article its full meaning. Here’s a wonderful recording:

I love my Michael and I simply can’t bear to watch his senseless suffering. I can’t stand it! But then again, I never could. When my dad was hurting from cancer, I couldn’t stand watching that either. It tears my heart out. Heck! Even the suffering of a complete stranger would send me straight up the wall. There’s no “out” for these intense feelings because I can’t cry. Is that how you feel too?

Maybe I’m just soft-hearted. Maybe, hell, definitely I’m codependent. I’ve never made any bones about that! But it’s the suffering of humanity that I, and probably you if you’re reading this, just can’t stand.

Love, love changes everything,
Hands and faces, earth and sky
Love, love changes everything,
How you live and how you die

Pain, other people’s pain, makes me want to scream. Oh, I don’t mind suffering physically myself. I’ve been in so much agony once or twice that I could barely breathe, but I just crawled into a hole (metaphorically speaking) and very quietly waited for it to pass. It’s other people’s pain that makes me want to scream.

Senseless pain. Not the kind of pain that serves a purpose like, “Oh, my leg hurts. Blimey, it’s broken. I’d better get to the hospital!” That pain serves a cautionary purpose. It’s somehow constructive. Post-surgery pain is constructive too. It will end when the body mends, hopefully. There’s hope. That kind of pain doesn’t tear at my heartstrings quite so much.

It’s this hopeless, hideous, day-in, day-out, purposeless, nonsensical suffering that I loathe. You know what I’m talking about, all of you who suffer from one of “those” newish, no-one-knows-where-they-come-from-but-I-have-a-theory autoimmune diseases like that ol’ catch-all “fibromyalgia.” Yes, Michael’s got that too. Fibro sucks. Or maybe the pain is actually caused be a medication that’s curing something else. Michael’s got that too, but hopefully, things will turn around soon.

Love, can make the summer fly,
Or a night seem like a lifetime

Why does pain (and head colds) always get worse at night? Something about nightfall kicks the pain up a notch. Something about bed makes the joints ache. Everyone I know who has pain sleeps in their comfortable chair in the Living Room because bed, even adjustable hospital beds, just hurt.

Yes love, love changes everything,
Now I tremble at your name
Nothing in the world will ever be the same

I know what you, Mr. or Mrs. Caregiver, really do at night. I can see you now, sleeping on the floor yourself just to be near your snoozing loved one slumped in their chair. Many times I’ve done that too. I know you watch their tummy to be sure it’s still rising and falling, checking to be sure they’re still breathing, still alive while their oxygen concentrator wails, sucks and puffs in the background. I know you tippy-toe through the house as they sleep, silently doing the housework, struggling with bills and paperwork or reducing the mounds of “stuff” that accumulate around the ailing person’s chair, silently because in sleep they find relief from unrelenting pain. I know you whisper-snarl “Shut up!” when the dog barks lest they wake the slumberer.

I see you drinking twenty ounces of water and taking two water pills just before bed just so you’ll be forced to wake up frequently to pee, so you can check on them. I see you filling up your bladder just so you don’t sleep through your alarm, so you can wake early, shower and then wake your loved one and drive them to their doctor appointments on time. I know…because I do the same thing.

I see you with a fake smile plastered across your face, because your loved one’s ceaseless agony makes you want to scream. “If one, just one, more thing goes wrong,” I hear you thinking, “I’m going to scream at the top of my lungs until I blow out my vocal chords.” That last straw could be anything: stumbling on those stray pieces of dry dog kibble on the carpet (because the dog just has to walk around chomping, dribbling kibble everywhere) catching you agonizingly in the tender arch of your foot again or the purring kitten’s tickly whiskers waking you up at 3 a.m. for the third night in-a-row as they thoroughly sniff every crevice of your ear. But you don’t scream, at least, not where anyone but God can hear you.

Love, love changes everything,
Days are longer, words mean more
Love, love changes everything,
Pain is deeper, than before

There’s no Off Ramp. No end to their stupid, senseless physical suffering and your stupid, senseless emotional suffering. My husband has a terminal lung disease. But we got lucky. Lung tissue has no nerve endings so his lungs don’t hurt. But the rest of him does. Not constructive pain leading to healing. Just stupid, relentless, tedious, pointless pain, some of it caused by his medications. There are no cures, no medications he can safely take to ease things like arthritis. We’ve asked; they said “no.” The minor surgery he had last week only solved things for, um, about twelve hours. Then the problem and the pain all came roaring back.

Love, will turn your world around,
And that world will last forever
Yes, love, love changes everything,
Brings you glory, brings you shame
Nothing in the world will ever be the same

That’s just how it is. It’s a brave new world: a world of pain. There’s no cure. Only an occasional reprieve, a so-called “Good Day.” He smiles through his physical pain, I smile through my emotional pain about his physical pain. Together we form one phony, smiling couple trying (rather successfully) to keep each others’ morales up and hide our pain from each other. It might be sick, but somehow it works very well indeed. What alternative do we have!?

I dunno why I wrote this. Maybe because caregivers get so little notice and so little credit. Maybe because when one of my step-children did acknowledge the care I give her father saying, “Thank you for making my dad happy and providing constant care for him. You are working your ass off! It doesn’t go unnoticed…” I was so shocked and so touched, I started to cry. Maybe because I wanted to scream tonight because Michael’s hurting so much and I thought, “There must be others out there like me. Other caregivers who can’t bear to watch suffering.” I can only hope that our reward is waiting for us on the other side and God will forgive us for those moment when, at least in thought, we are less than gracious, less than empathetic. That’s the only lemons I can make from this damn lemonade. (No, wait. Got that wrong. Reverse it!)

And yet, if I had it to do over again, I’d marry Michael again in a heartbeat. Only this time, I’d do it even faster. Our thirteen-day engagement was much too long.

His pain is just a Trick of Fate. He is not his pain. Were the shoe on the other foot, I know he’d take care of me. For better or worse, Baby, in sickness and in health!

Off into the world we go,
Planning futures, shaping years
Love bursts in and suddenly,
All our wisdom disappears

This is a salute to caregivers everywhere. I’ve got it easy; you have it much harder, I know. The washing, the dressing, the bathing, the bathroom care, biting back an angry retort to an unkind word spoken by someone in agony. I don’t have to do any of that for the always-pleasant, always-upbeat Michael and I don’t know how ya do it for your loved one. You are my hero.

If you’re caring for a military man or woman, a veteran or someone who has been ill ever since they left the military (but no one knows why,) well, I know all about that too. You’re also my hero. You’re serving your country through your caregiving. You’re just as much of a hero and a patriot as the veteran you love and care about, day in and day out. My husband served too; he’s been “inexplicably” sick ever since. I consider it my patriotic duty to care for him. I always wanted to do something patriotic to serve my beloved country that has blessed me so richly. This is my big chance.

I don’t know how to turn off that thing inside that hurts so badly when it sees pain. Maybe it’s called “empathy” and should not be turned off…ever. I dunno. I certainly don’t want to become cold and heartless!

All I know is that someone needs to validate caregivers. To give us permission to cry…or privately scream…or both! To salute you. To say, “Yes, I know exactly what you’re going through and it sucks! Hang in there. One day at a time. One moment at a time. We’re in this together. Watch a little comedy; it really helps. But above all, remember you are a hero!”

Love, makes fools of everyone,
All the rules we make are broken
Yes, love, love changes everything,
Live or perish, in its flame
Love will never ever let you be the same
Love will never ever let you be the same

And suddenly, as the glorious tenor of Michael Ball reaches for those final high notes, “Love will never, never let you beeeeeee….theeeEEEEE………SAAAAAAAAAAAAME!”, suddenly the dam breaks and finally, finally, I can cry.

Thanks for reading.
To learn more, please visit my website: www.lenorathompsonwriter.com

Photo by Riksarkivet (National Archives of Norway)