Sometimes Caregiving Is Like Dominoes

by Mar 15, 2018Self-Care and Stress, Special Needs Parenting2 comments

Caregiving is like dominoes in many ways, as I was reminded when a few simple changes in Mom's care sucked up writing time like a siphon.

Sometimes caregiving is like dominoes. Touch even the smallest thing and everything begins to fall apart. Our lives were constantly falling apart when our baby was a bundle of complex medical needs. But once his health stabilized and we tacked life back together, I forgot about the chaos of caregiving.

But the little changes suggested by the nurse who conducted Mom’s recent annual placement assessment set the caregiving chaos in motion again. Before I knew it, a week of my life had been consumed by the changes wrought by the purchase and installation of 3 things: an electric lift chair, a toilet safety rail, and the worst offender of all, a bed safety handle.

I spent one morning calling the long term insurance company. Twice. Because the news related in the first call was so good (“Yes,” the nice lady said, “those items are covered by her policy and 100% of the purchase price will be reimbursed once you send the receipts.”) that I called a second time to hear and document the information again. I was a half day behind on my writing, but the news was so good, I didn’t much mind.

But then, I spent another morning visiting the nearest medical supply store where they said all chair sales were final. Therefore, Mom should come in to determine the right chair for her. Which meant another half day getting her there and back again. Along with an eight week wait while the factory built the chair and shipped it.

Now I was a day and a half behind, but I had eight weeks to catch up before the chair arrived and the time came to haul it to where Mom lives. Plus, my brother said he would install the toilet safety rail and the bed safety handle. So really, the task was almost done, and I would soon be able to concentrate on writing.

Except that as much as Mom loved the toilet safety rail, she disliked the bed safety handle. Because as she said and continues to say every time I visit, “It’s in the way of the night stand, so I can’t turn the light off and on. I hate it.”

Which led to a half day of fruitless research about remote control lamps that led to more fruitful research about remote control outlets. Which led to a half day trip in driving rain shopping for remote control outlets at Walmart and sales clerks who said those have to be ordered online.

Which led to me coming home soaked and discouraged and complaining to my husband who said, “Oh, I have one of those in the shop. Let me get it.” He demonstrated how it worked and said, “The remote buttons will be hard to see in the dark, so you should mark them with paint or fingernail polish or something for your mom.”

“Caregiving is like dominoes,” I complained. “Change one thing, and my schedule falls apart. Do you know how far behind I am on my writing?”

He took pity on me. “I have colored tape in my shop. I’ll fix the remote.”

His kindness freed up just enough time for two things. First, I was able to rearrange Mom’s caregivng dominoes into brief semblance of order until there’s another shift in her circumstances. Second, my appreciation grew for the caregiving parents who keep going as the dominoes fall down around them. Third, I realized that caregiving is most like dominoes, not when everything stands straight and tall, but when we train our eyes to see the beauty in the clamor, humor in the chaos, the goodness of life within the ruins of caregiving.

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By Jolene

Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

2 Comments

  1. Jolene

    Hi Lillian, you share a familiar story and offer great hope to parents who are where you were after your daughter was born. I’m so happy the post resonates with you. Jolene

  2. Lillian Flakes

    Jolene
    I can identify with the domino effect as we experienced this in the early days of caring for our daughter Catherine who has Down Syndrome and spent the first 92 days of her life in the hospital. I kept a bag packed for almost 2 years before I felt comfortable returning the empty bag to its storage spot. We were in the ER more times than I care to remember and each visit home required more supplies and medication. We are stable now and on a a great path. Thanks for sharing this as it hits home and reminds me of God’s grace in the midst of a storm.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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