“Your lifelong membership is free,
Keep a-giving each brother all you can.
Oh, aren’t you proud to be in that fraternity,
The great big brotherhood of man?”
Those lines, written by Frank Loesser for the musical “How to Succeed in Business Without Really Trying,” imply an ever-living, bilateral service contract of sorts. “Ever” is one of my favorite words in the English language.
Standing alone, it can mean at any time, or at all times. That permanence is suspended by the introduction of a leading “s” (“sever”), or reversed by adding a preceding “n” (“never”). “Ever” began to be used in Old English to intensify words such as when, what, where, etc. Its application as a prefix or suffix makes it especially versatile.
One way that it has come to be used I find rather tiresome. Its pairing with what, as a one-word conversation-ender, strikes me as abjectly dismissive. When invoked like that, my brain translates it to: “No matter the circumstance, I simply do not care,” which is the absolute antithesis of engaged caregiving.
November is National Family Caregivers (NFC) Month. The Caregiver Action Network began promoting national recognition of family caregivers in 1994. President Bill Clinton signed the first NFC Month Presidential Proclamation in 1997, and every president has followed his lead since then.
The commemoration is an annual observance that pays tribute to those who provide caregiving to family members. The month promotes honoring caregivers for what they do, as well as raising awareness of their role and increasing the support that they receive.
Some startling family caregiver facts, as compiled by MedPro, are:
- Nearly half of working caregivers report having most, if not all, of their savings wiped out as a consequence.
- Family caregiving represents 90% of long-term care in America.
- Over 65 million Americans care for their aging or disabled loved ones.
- The value of this unpaid care is estimated to be worth $375 billion per year.
Each year, NFC Month has a theme, which for 2020 is “Caregiving Around the Clock.” My inner circle can certainly relate.
At present, I don’t require 24-hour, at-all-times care. But my grappling with ALS can spark a care need at any time. Work, play, and slumber have been interrupted for those near and dear to me far too often. The reality is that those who love me, by association, must remain ever-ready to come to the rescue.
Thankfully, I receive scheduled caregiving four hours a day from a team of professionals. They see to my bathing, toileting, and nourishment. Though compensated, they have become — through hours of shared routine and both comic and painful misadventure — like family.
The third leg of my care tripod are the folks whose geographic location separates us. Proximity may prohibit face-to-face encounters, but their ongoing check-ins, prayers, and encouragement make for a tsunami of care. I consider them extended family.
All told, my family of caregivers is immense. I am blessed beyond reason. My debt of gratitude is infinitely deep. The challenge I face, particularly in light of ALS-imposed limitations, is how to give back.
As I often do, I turn to the Bible for wisdom and direction. In 2 Corinthians, the apostle Paul writes about “the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.”
All humankind, at many points, will bear hardship in some measure. Likewise, we are exceedingly apt to share in the hardships of others. Any comfort that is received in response to personal affliction may be passed on to others. It is this very blessing that can be conveyed through ourselves to those around us.
Within that context, every interaction that I have presents a reciprocal caregiving opportunity. There are many functions that ALS has robbed me of. But I am still capable of certain gestures and actions, even a series of them.
I still can listen attentively. I still can reason with energetic empathy. I still can offer solicited input. I still can, however contrived, communicate. Most importantly, I still can pray.
In short, I still am able to demonstrate that I care. No matter the source of suffering, I can endeavor to make someone know they are not alone. Along the way, by witnessing that my tribulation is not all consuming, perhaps they will realize that theirs needn’t be as well.
NFC month is a great reminder, out of my great abundance of comforts, to share the wealth. Therefore, I will strive to give care to whomever needs it, whenever I am aware of it, for however long it is required, in whatever way that I am able.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.
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