Month: September 2025

Categories
Until Death Do Us Part

Caregiving with Help

Caregiving main

For I hold you by your right hand—
I, the Lord your God.
And I say to you,
‘Don’t be afraid. I am here to help you.
Isaiah 41:13
(New Living Translation)

Knowing God had a good grip on me was calming when planning Robert’s discharges from hospitalizations to home care with End-Stage Renal Disease (ESRD). Fear and worry were corralled, because I counted on God to help me keep Robert out of long-term institutional care for as long as possible. This post is the story of how God orchestrated people to help me care for him at home with Medicare and private-pay home health services and a groundswell of support from family, friends, and neighbors.

Nurses, therapists, and aides were deployed from a Medicare-certified home health agency.

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Private-pay caregivers helped with bathing, dressing, laundry, meals, and transfers in and out of bed. Although I canceled caregivers hired from an agency after only a few days due to standard shifts being a minimum of six-hours and Robert’s personal care only taking about two hours. My attempt to assign light housekeeping tasks for the remaining four hours went awry despite being within the scope of work. One caregiver acted like she was doing me a favor when she reluctantly agreed to run the vacuum cleaner while Robert was at dialysis. She expected to be paid for reading and talking on her cell phone. That was the last day she worked for us—I called the agency to cancel future services.

Although the agency did have an option for two-hour shifts, it came with a price penalty. For every hour less than six, the hourly rate increased. In an attempt to locate self-employed caregivers who lived nearby, I posted in our homeowner association’s private Facebook group. The hope was that caregivers who lived in the neighborhood would accept two-hour shifts because travel time was not an issue. Not only did this bring a couple of leads, but it also brought some volunteer help from neighbors. One of them was a recently retired registered nurse who helped me decide to call for an ambulance when Robert was too weak to sit up straight on his scooter for the trip to dialysis. A recommendation from Robert’s physical therapy assistant led us to a private pay aide that I hired for four hours on Sunday mornings while I went to church.

In the Galatians 6:2 spirit of sharing each other’s burdens, Christian friends and family pitched in to help from time-to-time with dishes, gardening, meals, replacing light bulbs and smoke detector batteries, hurricane shutters, salt in the water softener, and other miscellaneous chores. Visitors also helped with tasks relating to Robert’s care, such as assembling a mobility scooter, haircuts, installing a lower toilet and bidet toilet seat, removing furniture to allow for scooter access next to the bed, and replacing a wheelchair tire.

Visitors were also key to providing Robert with socialization, emotional, and spiritual support. Many brought gifts, like flowers and plants; or treats, like Easter eggs and homemade shortbread. Some played games with Robert, like Qwirkle and Uno; others reminisced on past adventures and stories retold at almost every meeting. Robert always agreed for people to pray with him.

Visiting hours were liberal ranging from an hour to a few days. Overnight guests included a church friend from Rochester, New York raising funds to serve as a missionary in Spain; a first-time visit from my High School girlfriend in New Zealand along with her daughter and granddaughter; and cousins from Indiana, Jacksonville, and Las Vegas. All of them brightened our days and took care of their own needs. My girlfriend even managed to get Robert into the pool!

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There was no limit as to how many visitors could come at one time. Van Etten Woods continued as the popular venue for reunions of about 30 family members and the 20 or so attending the annual holiday party of our local chapter of Little People of America (LPA). In both cases, the meal was a potluck and helpers came early and stayed late for set up and clean up.

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And there was no restriction to two-legged creatures—four-legged animals were especially welcomed by Robert. He enjoyed afternoon visits with dogs—Kit and Frodo, and three days and nights with Puffin, the cat who sheltered with us and his owner while their home was tented for termites.

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Robert’s niece and two cousins—Brittany, Linda, and Susan—took helping to the next level when they each had charge of one week of his care. Their love and kindness made it possible for me to travel to Sydney, Australia for three weeks to celebrate my 70th birthday with my family. Although this preceded Robert’s diagnosis with ESRD and need for hands on personal care a few months later, his impaired cognition and reduced mobility required protective care and guidance. He was in no shape to join me on the trip, but was agreeable to my going without him.

The magnitude of their caregiving assignment no doubt sank in when they received my detailed email instructions relating to getting in and out of the gated community, garage and house; the garbage schedule; medication management; food and hydration needs and preferences; his Medic Alert button; showering; tips on getting him up from a fall; handling his laundry; house temperature preferences; and supervision in the pool. This still didn’t cover everything. There were followup questions about the garden, lawn, hurricane preparation, and pool and water softener services. My contribution was to simplify their days by not scheduling any appointments for three weeks.

Thank goodness for FaceTime. Our daily calls between Stuart and Sydney took care of unforeseen issues, like the air conditioner malfunctioning. Naturally Robert missed me while I was gone, but he had a blast with all three carers who kept him comfortable and content. Amazingly, a year later Brittany and Susan served as substitute caregivers again when I went to Baltimore, Maryland for two nights and three days.

When I was invited to be the keynote speaker at the annual LPA banquet in Baltimore, I couldn’t imagine accepting the engagement. Robert’s care needs had increased substantially given his ESRD diagnosis which, among other things, required outpatient dialysis three times a week. However, Robert and his family caregivers encouraged me to go. So after prayerful consideration, I went and delivered the most important speech of my life—“Be an Advocate for Positive Change.” I was honored for the opportunity, humbled by those who made it possible, and hopeful that LPA members would believe that change is possible, recognize that everyone has what it takes to be an advocate, care enough to do something, and commit to going out to change the world.

And so what happens when the caregiver is incapacitated? We had three occasions to learn the answer—eye surgery, severe shoulder inflammation, and a vertigo attack:

  • My brother and sister both came from Sydney for ten days to care for both Robert and me when I had Vitrectomy surgery for a hole in the macular and a detached retina.
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  • A friend came with holistic remedies, a heating pad, and groceries when I was debilitated for a week with right shoulder inflammation and pain.
  • A cousin came with groceries, made Robert’s dinner, and helped him into bed when I had a vertigo attack.

As you can see, God was here to help me in every circumstance through the willing hands of so many dedicated helpers! And for that I am forever grateful.

For details on events only mentioned in this post, you may also want to read other writings by Angela Muir Van Etten: