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Guilt is not an option for caregivers or elders

by Isabel Fawcett, SPHR

Change and life are inseparable. Priorities change, more so for elders who are chronically ill and those of us who assist our elders. Fortunately, elders and their caregivers are not short on advice, resources and options when it comes to coping with change, stress and life transitions. For all who support caregivers and their elders, the objective should be individuals' freedom to choose what may, or may not, work for elders and their caregivers.

Life and Care Priorities

My Dad often reminded his family of a common saying, "the only permanent thing in life is change." In this speed-of-light electronic age where thousands of Americans across the country stood for hours in long lines on Saturday, April 3, 2010, awaiting first-day sales of Apple's new i-Pad technology, and with the world's burgeoning elderly (65+) population demographic, one thing is certain. Change is in the air.


Some change will always be legislatively-mandated, as is the case with the recent passage of the healthcare reform legislation. Other changes are inevitable, such as aging, and in some instances, declining health in conjunction with chronic diseases. Such examples are illustrative of changes where individuals have limited choices, if any. If we are continuously adapting as we should, however, human beings roll with such changes coping as best we can from day-to-day.


Coping generally requires my acceptance of the reality-of-the-moment and moves me toward successfully reconciling rapidly changing circumstances. The end result being, that one somehow finds one's happiest (sometimes only happier) medium, or life balance. Coping, therefore, necessarily differs from person-to-person.


Life and Coping are Not One-Size-Fits-All Experiences

In the year-plus in which I have chosen to be full-time caregiver to my beloved octogenarian mother, I came to realize that my priorities had changed, by my own choice, which is not a bad thing for me. I chose to be Mom's unpaid direct care provider. No one held, or is holding, a gun to my head. One of Mom's doctors said it best. "Your daughter is right where she needs to be at this time of her life, Mrs. Fawcett." I am working at my heart's calling.


Other caregivers whom I respect and fully admire have chosen, or sometimes ultimately yielded for sound reasons, to agency care, assisted living, or nursing home care for their elders. I would never second-guess any of my fellow caregivers who have chosen nursing home placement for their elders or other loved ones. I am reminded of the common saying that each person we meet is fighting his or her own battle. Not only does the statement hold true for me, but it is illustrative of how different individuals' life paths and day-to-day challenges can be regardless of appearances.


Why would any caregiver add guilt to our repertoire of life-coping strategies? Guilt is not an option as far as I am concerned. It never has been, thankfully, in my life. I say that with conviction, not limited to my care choices. For me, the self-imposed guilt prohibition applies across-the-board in my life as originally nurtured by one of my parents in my formative years.


Caregiver and Elder Roadmaps Abound


Everyone, it seems, has a prescriptive, remedy, life plan, respite strategy, and then some for those of us who are caregivers. The ideas, recommendations and sharing of such thoughts and ideas are welcome, refreshing and often helpful.

Believe it or not, though, sometimes those very ideas can be flat out exhausting. It depends on the day, the year, the caregiver, the elder, you-name-it. So, please don't take it personally if some caregivers do not appear as eager to jump on every prescriptive or remedial bandwagon. As some folks say, I'm "just trying to keep it real," if only for myself. That's part of life balance for me - "keeping it real," as in simple.

A couple of cases in point may serve to better illustrate what I am trying to convey:


Sound Advice # 1: "Join a Support Group!"

Sometimes when caregivers share, vent, or even speak, the first well-intended advice, often unsolicited, is that the carer "join a support group." The recommendation is valid, perfectly sound and can be very helpful if the targeted group accomplishes its objective of offering support. So far, so good right? I hear the advice-givers loud and clear. Even better, I do understand the meaning of the words.


Many years ago, I discussed juggling doctors' appointments, surgical procedures and work-care-life balance with a confidant who would be an expert in this field, given the person's educational background and more. "Join a support group," was the unsolicited advice I received. I appreciated the advice shared by my friend over dinner.

After our dinner and fun evening out ended and I got into my car and headed back onto the highway, I couldn't help but laugh out loud at the thought. Though not true, nor did I mean it, I thought, "She's crazy!"

All things considered, I had been balancing my life fairly well by working full-time, ensuring I had ample time to enjoy dinner, coffee, happy hours, and weekend hours with my circle of friends, while ensuring that my Mom's then-simpler assistive care needs were taken care of. Sometimes that meant turning around when I was about to drive into my garage because I had forgotten to pick up one of Mom's prescriptions or medical supplies. Somehow, I made it home sometime before 10:30pm. There were times when it was much later.


Where on earth would I then find time, energy, or even be inclined to get off the highway 1 or 2 weeknights to go to some live support group, park my car, (walk!) actively participate in the group, fidget in my business clothes the whole time, and then have sufficient energy to drive home? Never mind anything else needing to be done in my life at day's end. That was my short reality list, mind you. I'll bet a few of my fellow carer's get the drift without my having to elaborate on this point.

Sound Advice # 2: Get Thee to a Number of Experts


Mercifully, I have never been given this advice personally. I have witnessed it being said to other caregivers whose eyes appear to glaze-over as the words take to the air. To be clear, the advice may be on target. However, it is also easier said than done for many reasons known to caregivers who are in the trenches.


One of many examples that come to mind is advice to seek a family transition coach or consultant to assist carers and their family members in making decisions about eldercare transitions, or to help mediate when some siblings get to hotly debating eldercare decisions and finances.

The advice is wonderful. Truthfully, the advice also is exhausting for me. Adding another layer to care choices and life transitions in our fast-moving world is a last resort for me. There also are costs to be considered by the vast majority of caregivers who are not independently wealthy.


Informed and Doing Your Best is Success


All of the advice I have ever seen, heard and/or read, whether solicited or unsolicited, has been top-notch advice. Still, such answers, sharing and advice, are not formulas for living. They are options and resources, with more than a few caveats.

After having read, listened, shared, inquired, and then some, it is up to individual caregivers and their elders to make informed decisions that are right in each of our respective eldercare circumstances.

In my own carer's journey, I choose where, when, and how to enjoy moments of respite. Each caregiver and elder has every right, as I see it, to march to his or her own drummer and follow your carer's heart. If it is safe, legal and morally correct, you know what makes you and your elder happy, sad or miserable. No one else has walked a mile in your shoes.


As you consider and research care options and respite, don't lose sight of yourself or your values. A lengthy list of people to see and places to go is way more than a caregiver like me, and perhaps a few others, need. Busyness may be over-rated. At a minimum, busyness is exhausting, and sometimes, non-productive.

It bears repeating, I believe. Follow your carer's heart.