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To My Caregivers – A Patient’s Perspective

During our wedding ceremony, my husband Steve and I vowed to love each other in sickness and in health. I’m sure we thought maybe one day, in old age, one of us would become a caregiver. But in our early 30s, we had no idea Steve would be suddenly thrust into the role for an extended season. Wound care. Hospital and insurance advocate. Comfort care. Watchdog. Prayer warrior.

woman holding a book, next to a coffee mug

He still is my faithful advocate and hospital companion. He carries the knowledge of my condition and the scars of its implications. With my ongoing health concerns, we don’t know if or when that level of caregiving will be needed again.

November is National Family Caregivers Month. I share this post in gratitude to Steve, plus the countless family members and friends who have served as my caregivers over the years – my mom, my stepdad, my grandmothers, family, and friends. I share this to educate others on caregivers, who not only bear physical and medical burdens, but the emotional and spiritual burdens as well.

Caregiving is more than medications, appointments and pillow fluffing. It’s often the selfless, unseen work of a spouse or loved one bearing the emotional burdens, along with the physical ones, of a sick or injured family member. Often, they have to be the strong ones and absorb the patient’s own grief.

To Steve:

You gave me your patience and gentle words.

I gave you grief and my bad moods.

You gave me your tempered responses.

I gave you my verbal outbursts brought on by confusion, pain, and terror of what’s happening and what’s to come.

You gave me pain meds, new bandages, and life-giving feeding through a tube.

I gave you my tears and impatience when you didn’t do it fast enough or when it unintentionally caused me pain.

You bandaged again when it didn’t take.

I lashed out at God that I had wounds that needed bandaging.

You held the bucket while I vomited uncontrollably.

I glared helplessly through the sweat because no one could make it stop.

You rubbed my feet, my hair, my hands, my back so I knew you were near.

I numbed my feelings or brushed you away when it was too hard to process.

You brought ice packs, blankets, extra pillows, ice chips, and mouth swabs.

I was too hot, too uncomfortable, too fearful of every twinge in my body.

You barely ate or scarfed down your meals.

I made you leave the room to eat because I gagged from the smell.

You held hushed conversations in the hallway outside of my hospital room.

I panicked when you were gone too long because I needed you.

You slept on plastic chairs, hospital-grade recliners, and too-short narrow couches in hospital rooms, waiting rooms, and lobbies.

I cared only about my own discomfort.

You pushed my IV pole, my hospital bed, and my wheelchair.

I fought to find the will to do things for myself.

You snuck in short walks to keep your sanity.

I insisted someone constantly stay by my side.

You had to parent our newborn.

I was envious that it wasn’t me.

You gently prodded me to bond with our son, feed him, talk to him, and cuddle him.

I desperately wanted to mother him but handed him off when he cried, too overwhelmed to comfort him.

You kissed me and held my hands.

I was afraid when I looked in the mirror.

You tried to distract me with light conversation, good news, and games.

I resented it when the conversation wasn’t about me and my pain.

You wouldn’t leave my room even when the nurses insisted.

I relied on you to make my wishes known.

You spent Thanksgiving, Christmas, New Year’s Eve, my birthday, and Valentine’s Day in the hospital by my side.

I acknowledged the holidays with a weak smile.

You tried to remind me of who I was.

I let my present sadness cloud my past full of kept promises and my future filled with certain hope.

You encouraged me to sit up in a chair or take one more lap around the hospital floor.

I glared at the suggestion, then felt exhausted, yet accomplished when I did it.

You held steady when you were scared, too.

I wanted you to match my panic and be the strong one.

You prayed and pleaded.

I groaned and wept.

I doled out my rawest fears, heaping on servings of anger, apathy, and blame.

You made calls and coordinated medical teams. You advocated with unrelenting passion.

I was too tired to fight, push, and make my wishes known.

You were careful with my fragile body and diligent with your care.

I was angry at my frailty and inability to care for myself.

You dripped the liquid morphine under my tongue and requested more pain meds when I writhed in pain.

I cried out and pounded my fists, “Why, God?”

You cried with me.

Your life slowed to a lonely halt.

I mourned the life I was missing out on.

Your days became tracking my hours in a spiral notebook.

My days became endless counting of minutes until I could sleep or find fleeting physical comfort.

Your nights became well-earned sleep next to the whirr of my feeding pump.

I laid awake, resentful, waiting for the meds to kick in.

What could’ve broken us only proved your love more.

With you by my side, I felt we could face another day, one moment at a time.

When doubts threatened my faith, my assurance of God’s goodness was cemented.

When I thought fragility would break me, it only strengthened my trust, gratitude, and love for you and the God who never left us.

You were my hospital bulldog, my fierce patient advocate, my home health nurse, my insurance mediator, my sounding board, my verbal punching bag, my counselor, my friend, my prayer warrior, my long-suffering partner, my selfless, tireless caregiver.

Thank you. I love you. Happy National Family Caregivers Month.



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Maybe your faith is dangling by a thread. I get it. While living with an incurable genetic condition, I'm learning faith can be firm even while life is fragile. Join me as we journey to God's goodness on life's uncertain path...

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