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Elders' voices: a reality check for caregivers

by Isabel Fawcett, SPHR

Whether paid or not, generally the vast majority of carers are doing their best to assist and protect their elders. Caregivers and their elders are human. Since elders are care recipients and carers provide assistive support, it is easy - perhaps even tempting - to lose sight of how some elders occasionally may perceive the hand that sometimes literally feeds them.

Overnight Care Rounds

Most nights I do caregiver rounds by peeking into Mom's bedroom while she sleeps. I make sure that she's resting comfortably. If Mom's health is stable leading up to her bedtime, I occasionally skip my overnight rounds. If her blood glucose levels have been fluctuating too much during the day, or appear stuck in too-high or too-low modes, my overnight care checks become clockwork.

Some nights Mom's blood glucose is sluggishly low. On such nights, I'm committed to overnight blood glucose testing at certain intervals throughout the night. Depending on her blood sugar activity, my overnight care objective is to determine whether Mom may need urgent medical care. Sometimes I serve her some light snack to help her body inch its blood glucose level back up to a minimally satisfactory level from a medical standpoint. She loves the sugary boost to her sleepy taste buds.

From my perspective, on low blood glucose nights, my brain remains in production and observation mode. Mom appears to be mostly asleep.

Low Blood Sugar Nights of Care

Mom is asleep and verbally responsive. Then she feels the blood glucose testing finger-prick. Upon feeling the finger-prick, Mom temporarily opens her eyes, then closes her eyes in sleep just as quickly. I acknowledge her willingness to endure finger-pricks' testing as often as may be needed, day or night. "Thank you, Mom."

In turn, she thanks me? I cannot imagine thanking anyone for sticking my fingers with a little "pin." Yet, Mom expresses appreciation once her finger yields its droplet of blood. Even as she promptly drifts right back to sleep, I decide the next diabetes management and self-care steps. How nice it must be to sleep through the night having someone else focused on helping one's body restore its equilibrium.

Until fairly recently, I never had any reason to perceive anything different in such overnight care circumstances. Mom said one thing this week that helped me achieve greater perspective.

Lion and Lion-Tamer Tales

One long-ago fall off her bed was enough to last Mom and me a lifetime. Independent of each other, falling off a bed happened to Mom and one of my friends' mothers. In my friend's case, her Mom eventually died from the fall without regaining consciousness.

Mom learned everything she needed to know from her single incident. She shares recurring memories of her fall, shaking her head, as if in total disbelief. Sometimes, as she sits on the edge of her bed before going to sleep, she mentions that she needs to scoot over in her bed. She never wants to fall off her bed again.

I'm delighted it all makes sense to Mom without my becoming a broken record. All the more reason I did not see any elder perception issues looming on my carer's horizon related to my overnight care rounds or diabetes management until she said something memorable.

An Elder's Voice in the Night

Early one morning, I stuck my head into Mom's bedroom. Seeing she was sleeping close to the edge of her bed, I gently nudged her to scoot over toward the center. Speaking in soft tones, I told her she needed to move over. My exclusive care goal is to have Mom scoot over in her bed, not to awaken her from her deep sleep.

Normally, she scoots right over, snuggles her head comfortably back into her pillow, and falls right back asleep. This time, though, while still half-asleep she told me "No." She adjusted her head deeper into her pillow. I started to say, "Mom, you really need to scoot over in your bed," when she asked me why I didn't get an iron stick. (An iron stick???) "Yes, like the ones they use to tame lions," she said. Mom perceives that iron sticks, not chair legs, are used to nudge uncooperative lions?

Neither Mom's words nor her tone were harsh, rude, or in any way confrontational. Yet, I got the visual and subconscious message right away. I didn't say another word to stir her from her sleep. Just this one time, I allowed her to sleep, albeit way too close to the edge of her bed. I closed her bedroom door behind me. Mom's subconscious message transported me to a place where elder perceptions and voices are invaluable in care decisions.

For once, instead of caring, thinking and doing, I realized how difficult it must be for so many elders who are chronically ill to be prodded and led like sheep in the name of health, care and socialization.

Health and Care Perceptions are Vivid

I remembered my first-ever hospitalization and major in-patient surgery, now decades old, though still a vivid memory. While I was in the hospital, I wasn't consciously aware of my discomfort at being hospitalized. Only when I was discharged and home recuperating did my nightmares begin. The nightmares lasted a few months. They felt more like flashbacks than nightmares. I would dream that I was in a hospital, and I was being tortured at every turn. In my dream, there was no way out of the hospital.

After living with diabetes for 25 years, I would not be the least bit surprised if Mom's subconscious is on the same wavelength as mine was when I had to be hospitalized and "cared for" by healthcare staff. No matter the quality of the care, the patient's life is constantly interrupted. It must be tiresome and emotionally draining.

I'm thankful for my new perspective. Live and learn, or is it live and remember what it feels like to walk a mile in someone else's shoes? Eldercare requires superior balancing skills and endless compassion - and, in some instances, overnight rounds.