Studies, articles and blogs today give caregivers advice on balancing responsibility and managing stress. Whether you can hold a demanding job(s) or advance a career as a primary caregiver remains the dilemma. Nearly 44 million Americans (most working part or full time) provide regular, unpaid care for an older adult. And 10 million millennials (that’s 1 in 4!) have already joined the ranks of elder caregiving. Remember elder doesn’t necessarily mean old, early onset Alzheimer’s can be diagnosed as early as forty.
The real question might now be: Is it up to family caregivers alone or should employers share in some of this responsibility?
In the late 1990’s as a high tech consultant with global responsibility, dad passed away from complications of dementia and mom moved in to live with my husband and me. Mom was beginning to demonstrate early stage dementia symptoms, but my husband and I were initially clueless and later in complete denial as our lives flipped upside down.
My husband called from the emergency room after another of mom’s falls. I stepped out of the executive meeting to speak softly so others wouldn’t hear. The exchange began: “I’ll get a flight back tonight. No, there’s nothing you can do tonight. I feel awful you have to deal with this alone. You’ll be home soon enough to take over…” And so it went, it was like a familiar tune someone carelessly hums that’s now stuck in your head. I returned to the meeting feeling helpless and hopelessly distracted.
During our 18-year dementia journey, no one at work spoke out loud about the challenge of elder care. In the high tech world, women only whispered about the impact pregnancy might have on their career growth. The thought of walking into my boss’s office to discuss the true time required to take my mom to doctor’s appointments was inconceivable.
Can we manage the role of caregiver with career? Or are we destined to exit the workforce in droves taking up caregiving while shortchanging our own future physically, emotionally and financially?
The good news is workplace stigma of caring for an aging loved one is changing. The bad news is it isn’t changing fast enough.
In a newly released whitepaper, “Taking Care of Caregivers,” Facebook highlights a cultural shift for employees with elder care responsibility by incorporating existing community resources with emerging business platforms. The big benefits are resources available in the workplace and protected under the company’s HR offerings. Although unproven, the hope is you’ll focus on work, openly support your caregiving responsibilities and grow your career. The motivation for this change is it’s good for you and for your employer.
ReACT (Respect A Caregiver’s Time) and AARP teamed up to produce “Supporting Working Caregivers: Case Studies in Promising Practices,” which identifies companies trying out traditional and innovative business practices to specifically support employees with elder care responsibilities.
What if you don’t work for one of these enlightened companies? What can you do while waiting for the culture to change where you work?
Four things to remember:
Accept that you cannot do it all: Identify what you need to be successful in caregiving and make sure you get it. Don’t devolve into the pity party beginning with, “no one else will help”. Accept that your immediate or extended family may not be your primary support network. And it that’s the case, move on.
Find your tribe: Identify resources who support your caregiving responsibility. If your company doesn’t offer elder care consulting, find a service that does. There are many free services for information and support like the Alzheimer’s Association 24-hour helpline (800-272-3900).
Push aside feelings of guilt: You didn’t cause this, even on the days that your loved one’s behavior might suggest you are wholly and totally responsible. Understand it’s the illness and not your loved one talking.
Know you will lose patience during caregiving: Whether it’s at yourself, your loved one, your job, the medical community, fate or the world you will lose patience while caring for a loved one, especially one with a brain disease. Walking a tightrope between your work, caregiving, family and your own health won’t allow time to take a walk or go to the gym. Instead develop strategies that aren’t time bound: tune out “in place”, step away, smile and nod or excuse yourself and scream into a towel. Do what quickly disconnects you from the emotion of your most stressful situations.
Lisa B. Capp is a writer, activist and dementia caregiving survivor. She serves on the Alzheimer’s Association Leadership Board for the Desert Southwest, is a member of the Alzheimer’s Impact Movement (AIM) and AlzAuthors.
As a High Tech Change Consultant, Lisa worked with leaders of global business, governments and non-profit organizations around the globe. Her passion now is focused on empowering dementia caregivers to survive their journey with grace.
Join Lisa in a conversation about grace on Twitter @lisabcapp and LinkedIn at LisaBCapp.