Joco Opinion

Caregiving 101 —Keep pushing for what you need

My husband pulled into the driveway on a Saturday night and I met him with a rolling desk chair.

We’d had two days’ notice to prepare for my father-in-law’s arrival at our home. After a week with pneumonia in a St. Louis-area hospital, FIL was being released.

FIL was a robust 96 and living independently — driving, shopping, cooking, managing his household — before this illness. We assumed that he would spend a short time with us and then bounce back, as always, and return to his own home.

But on the drive from St. Louis, it quickly became apparent that FIL was sicker than we’d thought. In fact — harsh, but true — my husband suspected that the doctor had given up on FIL, releasing him to die. And FIL thought so, too. “My next stop is the crematorium,” he kept repeating between coughing spells.

It wasn’t his next stop. We made it to our house. But it was clear that FIL would not be bouncing back anytime soon.

It took both of us and a lot of strained muscles, bruised shins, run-over toes, sweating and maneuvering to get 6-foot tall, 220-pound, barely conscious FIL out of the car, into the rolling desk chair (which kept rolling away), up one step to the front porch, up another step into the house, down the hall to his new bedroom/laundry room, out of the rolling chair and onto the bed.

We were all exhausted.

I had bought waterproof pads for beds and chairs. We had a portable urinal from the hospital. We had a cane and a walker from another relative. Beyond that, we were sadly lacking in terms of DME, which I was soon to learn was insider talk for durable medical equipment.

In the next few days, the roller chair sufficed most of the time, and sometimes FIL was strong enough to use the walker for short distances. But neither would fit through the door to the toilet. He could stand, shuffle inside the bathroom, turn around and sit down, with assistance. But it was hard getting him back up and out of there when he was finished. We could roll him right up to the shower stall, but there was nothing for him to hold on to in there.

We needed different stuff.

Over the next days and weeks, we gradually obtained more DME. I improvised, begged, borrowed and bought.

I posted a wheelchair request on Facebook and a friend delivered not just one, but two chairs she had saved since a son’s injury rehabilitation, one for the house and one for the car.

I bought a raised toilet seat at Aldi.

I borrowed a friend’s blood-pressure monitor until we obtained our own with points from FIL’s insurance program.

I asked for and received a free blood-sugar test kit, and test strips, from the doctor’s office.

We received a better walker, with a seat, covered by FIL's insurance. I found out that durable medical equipment may be covered by Medicare when prescribed by a doctor for use at home and when provided by a supplier approved by Medicare.

I lugged in a wrought iron patio chair for the shower. Sturdy. Stable. Water won’t hurt it. Perfect, I thought! But not ideal, and I also wished for a portable toilet for FIL’s bedside. So I posted another Facebook request.

Offers and suggestions poured in. It turns out a neighbor houses her church’s DME cache in her garage, and she had three shower seats for me to choose from. Others recommended a variety of sources for any further needs we might have, including:

• Thrift stores, such as Goodwill and Savers

• Resale areas of retirement communities

• Muscular Dystrophy Association,


• National Multiple Sclerosis Society,


• Churches

• Coalition for Independence, 913-321-5140;

• The Whole Person, 816-561-0304

• Johnson County Area Agency on Aging, 913-715-8999

• Medicare, 800-633-4227.

We are grateful to our community for the resources. FIL has all the DME he needs, the rolling desk chair is back in the office and the wrought iron patio chair is now back on the patio.

Caregiver lessons learned: 1) Be creative. Modify what you already have in your home to fit your needs. 2) Ask for help. Keep seeking out resources until you get what you need.