Recently, I celebrated my 20th wedding anniversary, and what an eventful marriage it’s been.
My husband, Michael, has Crohn’s, a chronic, autoimmune disease of the GI tract that’s sent him to the hospital nearly 100 times and required over 30 surgeries.
He’s been the valiant patient over the course of our relationship and I’ve been his stalwart caregiver.
Me, a caregiver. Ha! The very idea makes me shake my head. I’d never been the nurturing type before I met Michael.
I didn’t have kids or pets or even houseplants. And I was the daughter of a mother who’d cared for two sick husbands (my father died of brain cancer, my stepfather of complications from epilepsy) and was determined to avoid her fate.
If you’d told me I’d be caring for a man with one medical crisis after another, I would have said, “Not me, baby.”
And yet, I walked right into a situation I was wholly unprepared for, as are most caregivers when you get right down to it.
Nobody expects his or her loved one to go down. We’re all thrown into the role suddenly and without a road map.
In the early years, I would freak out every time Michael had an emergency.
I was terrified that he’d die, resentful that he kept leaving me, torn between my twin desires to be with him at the hospital and home writing my novels, envious of other couples and their busy social lives, exhausting myself trying to find ways to “fix” him and neglecting my own health in the process.
Eventually, I stopped fighting the fact that I had a husband who would always need care and accepted it, adapted to it, even embraced it.
As psychiatrist Neal Mazer says, “It’s really important to acknowledge, ‘This is not the dream I had, but there’s more than one dream.’”
I started dreaming a new dream, and it looks very different than the one I had when I stood at the altar 20 years ago.
No more dragging my husband off to vacations he’s not healthy enough to enjoy. No more fantasizing about nights of relentless lovemaking.
No more telling myself that Michael will be “fine” if I just unearth the right doctor.
I urge other caregivers to dream their own new dream – whether they’re caring for a child with autism or a parent with Alzheimer’s.
Our new dream includes continuing to be our loved one’s best advocate and learning how best to navigate the medical maze, but it also means taking care of ourselves in ways we never did before.
Here are some of the ways I discovered, thanks to help from other caregivers as well as experts in a variety of fields.
– Laugh. Yes, I know it’s hard to have a sense of humor in grim times, but as a writer of romantic comedies I should have remembered the importance of comedy in everyday life.
Health coach Nancy Kalish says, “Research shows that laughing lowers cortisol levels and provokes a relaxation response. Even faking or forcing your laughter does the same thing.”
– Eat. No, not that whole bag of Doritos Nachos Cheese Flavored Tortilla Chips. I’m talking about a healthy meal instead of junk on the run, even if it’s just for yourself and even if you think you can’t manage it.
Bestselling cookbook author Martha Rose Shulman says: “When my son was in the hospital, I didn’t get home until ten o’clock at night. I was starving. I took a piece of bread, toasted it, and then I poached an egg and made a Panini.
I had some old mushrooms around and piled them on top. It so hit the spot, and it only took me ten minutes to cook. As long as you have stuff in your house, you can make a good meal in no time.”
– Move. As in exercise. Whether you’re visiting a hospital or a memory care facility, you can still stay fit without shirking your responsibilities. Mikki Reilly, a personal trainer and fitness author, suggests that we can change the way we sit in that visitor’s chair, for starters.
“Straighten up and don’t slouch,” she says. “Think of your spine as a string of pearls and gently pull all the pearls up. And use the stairs instead of the elevator – just run up and down. Those who exercise are in better condition and have a better sense of well-being than those who don’t.”
– Sleep. Nancy Kalish has tips for those of us whose minds won’t shut off at night:
1. Resist the urge to nap during the day, because it cannibalizes your sleep at night.
2. Remove yourself from all sources of light – yes, that means computer and TV screens – as light prevents the release of melatonin.
3. Get an old-fashioned hot water bottle, fill it with really hot water and place it on your stomach. It calms you down, helps with digestion and soothes you to sleep. A heating pad works too.
4. Spray your pillow with lavender oil spray or try using an herb pillow.
5. Count backward from one hundred – a variation on counting sheep. It calms your breathing but also quiets the mind and gets your brainwaves to stop spiking.
– Pray. I may not be religious, but I do pray when Michael’s having a rough time. “Please, God,” I say. “Just get him through this surgery and I promise I’ll never yell at him again about leaving Kleenex in the pockets of his jeans and getting a hundred little shreds of white tissue all over the load of laundry.” So far, God has heard me because Michael is still alive and well and leaving Kleenex in his pockets.
Praying comforts me. It allows me an outlet for expressing my fears. It’s a time when I can say whatever I want and nobody will go, “You’re crazy.” There’s a reason most hospital and senior facilities have “spiritual care” departments.
Whether we’re believers or not, our emotions, our psyches, our spirits need attention too.