Caregiver to Caregiver

I’ve looked at love from both sides now 
from give and take and still somehow
It’s love’s illusions I recall
I really don’t know love at all. – Joni Mitchell

Poor Joni. According to her lyrics, neither giving nor taking love helped her to know the reality of that illusive word.

When you replace lovewith caregivingI don’t think many people would draw the same conclusion. Whether you have been a caregiver or a care recipient, reality sets in.

In caregiving circles, the following observation by former First Lady Rosalyn Carter is frequently quoted: “There are only four kinds of people in the world – those who have been caregivers, those who are caregivers, those who will be caregivers and those who will need caregivers.”

When speaking to groups, I often shared this quotation and asked for a show of hands to identify members of the audience by using these four categories. Then I would ask which of the four categories was the most dreaded. Hands down, no one wanted to be in the last group.

Even though caregiving – past, present or future – is considered to be a challenging role, most people would rather provide care than need care. This past summer I experienced being a care recipient first hand.

Oddly enough, the first symptom that something was wrong, was snot. I refuse to label the copious drainage mucus; snot was just more appropriate. For two weeks it had made me miserable during the day and an insomniac at night. I even mentioned to my daughters, in jest, “I have so much snot in my system my skin no longer feels dry.” I was being sarcastic; I knew one had nothing to do with the other. But I had been noticing for several days that my hands – especially my fingertips, which often took a beating from yard work and housekeeping that led to an addiction to hand lotion – didn’t feel dry.  I could not remember the last time I had reached for the lotion dispenser.

One week into this illness, I woke up feeling so terrible that I went to a walk-in clinic on Sunday morning. They prescribed a lot of stuff including an inhaler and nebulizer treatments – both of which I had never used; steroids; an antibiotic; a cough suppressant; an expectorant; and a nighttime codeine-laced cough syrup to help me sleep. I dutifully followed all directions.

Friday morning I was still coughing my head off. There had been little improvement in my overall symptoms, so I followed up with my primary care physician, a gentle and sagacious woman in her 50’s. She was concerned I may have pneumonia and switched me to a more potent antibiotic; started a new tapered regimen of prednisone; added a probiotic and two nose sprays; and suggested I skip the cough suppressant. She also ordered an in-office chest X-ray, noting she would let me know the results as soon as possible. The next day I received her e-mail – no pneumonia – in fact, my lungs were clear. Good. I started feeling better.

The next Tuesday was the first time my fingers went beyond just not feeling dry, to – for lack of a better word – feeling squishy. Actually, squishy – which means soft and moist– is a pretty good description, but I would soon find out that those in the health care field didn’t know how to interpret squishy fingers. The sensation was difficult to describe, but hard things felt soft and soft things (like fabric) felt spongy.

Twice that morning my knees felt as if they were buckling. I considered two possibilities: all the different medications were not interacting well, or I was just out-of-shape from two weeks of being sick. So, I did what any normal person would do: I sucked on a cough drop and hopped on my recumbent bike. Just 15 minutes seemed to help. I showered, dressed and asked two of my granddaughters if they wanted to go grocery shopping with me. We had a lovely time. After dinner, my knees buckled again; and everything I touched felt squishy. Wood felt like velvet; smooth fabric felt like a sponge. Was I having a reaction to one of the many new medications? Maybe a drug interaction? I have always been sensitive to drugs in general and have had some weird reactions in the past.

About eight o’clock that evening, I just didn’t feel right. I walked next door to my daughter Amy’s house. She is a registered nurse and her husband is a physician’s assistant. He took my vitals and all appeared normal. We talked about the possibility of medication interactions, especially the prednisone taper. I walked back home, feeling tired and yucky. I tried to go to sleep, but my husband had just come down with the same respiratory malady and was coughing his head off, so I excused myself and stretched out in my recliner.

The next thing I knew, it was morning. I sat up rather quickly, but when I tried to stand my body didn’t cooperate. My feet hit the floor, but my body swayed from side to side. I held on to the walls (which felt like velvet) to make my way to the bedroom. I remember bouncing through the hallway when the words Guillain-Barre’ flashed on the screen in my mind. My only knowledge of this syndrome had been almost thirty years earlier when our church had received a prayer request for a missionary who was serving in Africa. She had been stricken by this peculiar neurological disorder and was airlifted to a hospital in Europe. Eventually, after several years, she had a full recovery. I vaguely remembered our pastor describing her symptoms as inability to walk, talk and breathe – she had been placed on a ventilator for much of her long recovery period.

“Something’s wrong; I need to go to the ER,” was the proclamation that startled my husband Randy awake as I plopped down beside him on our bed.

“Are you sure?” he asked.

I tried to stand, but my extremities were as jiggly as Jell-O. I don’t remember my exact words, but I blurted out something like, “Either that or die here.”

He jumped out of bed and immediately sent a text-message to our four adult children, while I grabbed hold of anything stable to hold me up. It took just a few minutes for our daughter Rachel, our next-door neighbor to the south, to appear at our bedroom door. “What do you need? What can I do?”

Rachel has the caregiving gift. She provided end-of-life care for my mom and assisted me with my dad. Not to mention, she and her husband Steve have nine children ranging in age from three to nineteen. Definitely has the gift.

“Will you go with us to the ER?” I was thinking that she could help me walk into the emergency room while Randy parked the car.

With Rachel’s help, I tried to take a quick shower and wash my hair (that’s important, you know!) but stopped after wetting myself down. No make-up, no jewelry, just clean underwear, a comfortable shirt and my knee-length jean shorts. I assumed I would not be back home that day.

Our local hospital is about 10 minutes away; sitting still in the car, I felt fine. Randy asked, “Are you sure you need to go to the ER?”

I didn’t respond. He let us out at the entrance and Rachel kept me from collapsing to the ground as we walked through the sliding doors. When I almost slumped to the floor, she called out to the four staff, sitting and talking at the reception desk, “Hey, we need some help here; my mom can’t walk!”

At first they just stared, probably wondering if her mom were drunk, as I flailed and swayed uncontrollably from side to side. Then one of the nurses jumped up and hurried over with a wheelchair. Once seated, I was no longer flailing – and my cognition was intact. The staff inundated me with questions, which I was able to answer coherently, but the only symptoms I could provide were “my fingers feel squishy” and “my body is like Jell-O when I stand up.” Not exactly text-book, but it was all I had. Of course, I explained about my two-week bout with a respiratory infection and informed them of the plethora of medications, which I had thrown in a grocery bag on the way out of the door and placed on the desk.

As I sat in the almost empty triage area, once again that phrase – Guillain-Barre’  –flashed before me. “That’s a long-shot,” I considered and decided not to try and self-diagnose. Already, I was feeling somewhat intimidated. One of the nurses had chortled as she advised, “We don’t treat squishy fingers.”

The next installment of this four-part series will be available on 10-29-18 – To admit or not to admit (to the hospital) – that is the question.