What do I have to complain about?
Dramatic Crepuscular Rays in the Foggy Aspen Meadow by the Rice Creek North Regional Trail in Shoreview, Minnesota

Moan, moan, moan. YOU’RE NOT ALONE, friends soothe. It doesn’t help, you know — telling me. I know friends mean well offering pop-in help and I am grateful, truly, but fact is David and I are adrift alone in a sea of day to day survival.

Try a caregiver’s life for twenty-four hours and then tell me. Try coping on three or four hours sleep. “Go to bed earlier.” I imagine you advising. But that’s impossible don’t you see. I can’t till David’s safely tucked up.

“Ready? Ready YET David? Teeth? Clothes off? Slippers? Washed? Please hurry, I’m dropping.”

Familiar isn’t it Caregivers, functioning asleep on our feet?

My sleep cycle now broken by activity, I lie in bed for hours counting….sheep? — forget those wooly bundles jumping gates — tomorrow’s to-dos are what I’m counting. I try stars next, get caught up wandering the universe, and following moving lights across the heavens — could one be a UFO?

One A.M. “Blast,” I swear, “it’s now nearly two.” I’m clock-watching.

Sleep aids? No luck with teas or pills. CBD, high-free cannabis oil? Tomorrow I must sign on and get some. I imagine driving the twisting road to Colorado…snooze deeply. Morning comes two seconds after my eyelids close it seems.

“What time is it?” David asks mid dream before first light, before I’m ready to be a giver of care.

“Too early, David.” I roll away. Remembering he needs me, I roll back to see David standing by my pillow. A pair of scissors dangles in his hand. Chore number one of the day: snip off wet security underwear. Change him into dry ones.

“Too early David,” I growl after I’ve made him comfortable. “Go back to bed.”

Within a second snoring rattles from his room. “Lucky bugger,” I fume. Try reading. Try sips of hot tea. Give up. Get up.

“Terrible night. Just couldn’t fall asleep,” I glower over breakfast. “Watch out I’ll be a crabby bitch all day.”

Complaining won’t change a thing I realize. I’m venting that’s all. And I know my life isn’t ALL toil and grind and we still have heaps of fun. Take today’s swim class peddling our exercise noodles. Legs pumping, arms waving, laughing, being silly, David and I narrowly missing one another — circus performers on unicycles. Take the lecture we attended, the film that held us spellbound, or the birthday party of a friend — the warm snuggle we share if I’ve hopped into his bed. Bed, now there’s a word to make me grateful.

BED. I’m pulled back to the night drive through Mumbai from the airport over a dozen years ago. Rows of crates line the pavement. Four-tiered accommodation for the homeless: on top of the crate, inside the crate, a sheet of cardboard on the sidewalk, then the least desirable and by far the worst — children even — curled on the hard pavement, legs sticking into the traffic. Yes, life could be WORSE. David and I have no idea how much worse… Parkinsons or no, with more blessings than fingers to count them, we are so very lucky. Today David surprised me — got almost dressed without my help. Small achievement, you may judge, but I saw it as a gift.

Our home’s paid for, we have each other, and a mountain view whose white peaks sing the horizon. We have enough money to choose what and when we want to eat, what clothes to wear, and what to do with our time — luxury enough to balance the Parkinsons horribles. If a handful of earth and sky hold no emptiness as Hafiz declares, I have more riches than I can count.

“What’s more,” I scold myself. “I have the freedom of choice,”

Location, job, socio-economic status, life has swung me up, down and turned direction often. Making the switch from speech therapy to sculpture, sculpture to writing came easy. Working in a calm office with music playing, beat pounding heavy bags of clay. Giving up time to devote to David’s care — not so easy. Words, thoughts pile heaped unwritten in my mind. The computer keys stand lifeless, beckon me to sneak away and get tapping. But hey…

After all what’s more important — my beloved husband’s wellbeing or chasing some elusive fame by finishing my book about Spain, or the sequel to POET UNDER A SOLDIER’S HAT (the book I wrote illustrating one hundred years of Colonial rule in India through the personal stories of one family — mine as it happens.) The answer:

David. No question. He, me, us, our karma together — we’re what matters.

Parkinsons, my caregiver role, life’s circumstance — are what has been dished to us this lifetime round.

“Better get used to it baby, this is what’s is,” I counsel myself.

Nice concept. No quite so easy to carry out. I am still struggling deciding what part of me to chop. Forget should. Forget duty. Forget if only

“This is the life you’ve been given by God. Live it fully.” Reads one of two quotes I keep on my puja. The second reads, “Whatever you do let it come from a place of love.”

I stand back up, my direction clear. Shared joys. Simple pleasures — those I’ll dwell on. Mini hikes, desert drives and bird watching from our living room. Yes, I have to pack and load David’s heavy walker into the car for expeditions. Yes, I have to help him on with his shoes, coat, scarf and hat. Remember pills, drinking water, sunglasses and hiking poles, but oh the exhilaration of getting out freed from our grotty world of daily coffee spills and trampled macaroni beneath his chair, to walk a leaf-strewn mountain path of brilliant yellow. One example.

“Let’s drive to Aspen Meadows,” David suggested last fall.

“How beautiful was that?” we sighed back home.

Life lessons are all about me when I’m tuned to reach for my rose-tinted specs — see things differently. Even surveillance cameras, would you believe?

Picture seven people, age range five to seventy-five. Returning home by car after a glorious week on the Mediterranean. We’d just turned onto the Grenoble autoroute from Voiron when the engine died. Panic — we’ll all be killed. No way could David jump the fence to avoid the frantic shoal of speeding holiday traffic. Pulling on the obligatory green breakdown jackets and setting warning triangles back and front, our son and daughter-in-law flapped orange jackets fearful we’d all be mown down. Before we could phone for help an orange rescue vehicle trundled into view, behind it a tow-truck. A surveillance camera spotting the breakdown automatically dispatched a rescue crew — hoisted us away.

“A welcome intrusion,” I now describe those big brother eyes — those invasive spies I’d so derided.

No special dinner, no dozen red roses, February the fourteenth, David opened his card. “Will you be my Valentine?” the words read.

“Yes,” he said. “Will you be mine?”

“Yes,” I answered.

…perfect I can never be. WEARING A HAT FROM HELL, my husband’s caregiver, I am 78. I am tired. My husband has Parkinson’s. He is tired too.

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  1. At least he can walk. Lugging a heavy wheelchair means too few places accessible…and the inevitable poo emergency. Where to go? Pre-planning becomes like an amphibious warfare operation – where to pre-stage for all contingencies. Sigh. Some days it’s too hard. And neither of you will enjoy the outing, in any case.

  2. Caregivers often find immense struggles and a range of blessings in the same situation. It’s easy to say that things could be worse but that doesn’t negate just how hard it truly is, especially day to day.


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