To Master Inclusion in the Workplace, Start Supporting Working Caregivers

Family members and friends who make sure the needs of their loved ones are met, are moving to the forefront of conversations regarding challenges facing employers. From my perspective, the conversation is long overdue. I have had the unique privilege of working side by side with families who are struggling to navigate the challenges that face so many family caregivers. I have seen them bravely and selflessly put aside their own needs and overcome long held differences with one another to unite for the common good of someone they love. 

The term "heroic" may seem an embellishment when used to describe something millions are doing every day in this country, simply because it's the right and loving thing to do. In fact, calling caregivers heroes is an understatement when one considers the lack of support and recognition they receive. While both men and women step up to the challenge, more than 60% of family caregivers are women and 25% of them are millennials. 

 What most often comes to mind when the term "caregiver" is heard, is a middle age woman caring for her mother, father, in-laws or all of the above, who suffer ailments that seem to coincide with aging. This is an understandable assumption because this is one very common caregiving scenario but there are many others that too often get overlooked. Caregivers include mothers of children with physical, emotional and developmental disabilities, sisters caring for their sibling with a mental illness and wives or partners lovingly providing care to the most important person in their life who was just diagnosed with cancer. When you consider all of these scenarios, the number of individuals called to the role of caregiver is staggering.

I have spent the past 10 years in the trenches with family caregivers. I have also been the primary caregiver for my grandparents and my mother who suffered a debilitating stroke and lost most of her vision at the age of 58. When I became my mother’s caregiver, I was 38 years old with two young daughters and a full time job. Even with the knowledge and experience that comes with being a healthcare professional, I was utterly overwhelmed with the responsibility of making sure my mother received the care she needed to recover. I spent more time than should have been necessary, reminding all of those caring for her in the hospital that blindness was a new and frightening way of being for her and that just a week prior I relied on her to drive my daughters home from school each day.  I was heartbroken and stunned by the loss of who she had been and terrified about the unknowns of her future needs.

Everyday I felt like a failed circus performer, attempting to juggle flaming torches that were crashing to the ground around me. 

Still, I was aware I had an advantage. I understood very well how the healthcare system worked. I knew the precise situations where my involvement making certain all the i’s were dotted and t’s were crossed, was essential. I was well aware of the unintended outcomes that could occur if someone wasn't minding the store. I thought about all the other family caregivers in my situation who didn’t have the experience I had and how frustrating and devastating their experience must be. As I continued the journey with my mother through intensive care, rehabilitation and the transition to a new way of life as someone with vision loss, I couldn't stop thinking about all the ways the process could be better.  Long story short, this prompted me to create a professional patient advocacy service where I helped other family caregivers navigate this journey with a more robust set of skills and tools. Most of those I assisted were working women who were struggling to maintain their careers and make certain those they loved were being properly cared for.

   69% of caregivers say caregiving is their greatest source of stress.

Women who have invested years, sometimes decades into building a career are having to make difficult choices that impact their finances, family and profession. Some of these choices include cutting back hours at work, leaving the workforce entirely and using their own retirement and savings to support those they are caring for who are no longer able to care for themselves. It is estimated caregivers spend on average, $10,000 per year out of their own pocket and lose 33% of their income as a result of caregiving. Women are being crippled by these responsibilities. Understandably, many don’t discuss the impact caregiving is having on their performance at work or share these struggles with their superiors. They are afraid of being reprimanded or viewed as not putting forth their best effort. They are caught in a lonely role, with little recognition or support.

Working caregivers suffer 70% higher incidence of anxiety and depression

What can employers do? Expanding paid time off to include family caregivers is a start but caregiving typically isn’t scheduled and doesn’t end with the same prediction as say, a pregnancy. Caregiving is a way of life for many working women, especially those who care for a child or adult sibling with disabilities or mental illness. Employers need to start thinking about a broad approach that encourages all family caregivers to feel they can bring their entire selves to work and openly share something that is a significant part of their lives and that they should take pride in.  A larger percentage of Americans are likely to become a caregiver in their lifetime than to have a child so why aren’t employers implementing widespread measures to address challenges and costs that significantly impact both them and their employees? Some actions known to make an impact include:

·     Executive and management education on supporting working caregivers

·     Campaigns to make working caregivers aware of all benefits available to them

·     Regularly scheduled caregiver support groups and education events

·     Proven tools to make tasks of caregiving easier for working caregivers

·     Flexible work schedules and job sharing

·     Open dialogue about the challenges of caregiving

·     Financial planning services to prepare for the costs of caregiving

The number of adult children caring for an aging parent has tripled over the past 15 years and is on target to continue to grow at a record pace over the coming decades. While caregivers come from every culture, race and gender, women shoulder more of the burden and too often they do so alone and at the expense of their personal and professional well being. CDC reports indicate that 60% of Americans have at least one chronic condition and 42% have multiple chronic conditions requiring assistance to properly manage. A staggering 5 million Americans are currently living with Alzheimers disease and that number is expected to rise to 74 million by the year 2050. 

Who is going to step in and fill the gaps in a fragmented healthcare system to make sure the needs of the people they love, are met? History suggests the initiative will most likely continue to be lead by women. While I am genuinely thrilled to see changes in the way the workplace is addressing pregnancy and the needs of new mothers, I am baffled as to why initiatives to offer support and recognition for obligations that go far beyond child bearing years, are neglected. It doesn't make sense and we can do better.

Michelle Chaffee Founder & CEO alska and Connected Caregiving