For Family Caregivers, the challenges are always personal


Some of you have heard me share my personal story about the day my professional view on caregiving became a family member’s view.  It’s a story I share often, but rarely do I include all the details.  Some are private; some just too painful.  I bet most family caregivers can relate.

It started late one night when the phone rang.  One the other end was an emergency tech who said my parents had been in an auto accident and that I should immediately drive to the city hospital to meet the ambulance bringing my mother in.

“Where’s my dad?  Is he OK?” was the first question I asked.

“Just go to the hospital – they’ll explain it all,” was the response.

Fast forward several hours, and I was faced with making funeral arrangements for my father while being on standby to see, hour by hour, if my mother was going to live.

All of my years of experience as a hospital social worker, management consultant for senior care and educator about issues related to caregiving just flew out the window.

I was now simply a family caregiver, doing my best to balance kids at home with daily sports agendas and school needs, a growing business and professional demands, and the tasks and emotions I faced on a daily basis meeting my mother’s needs.

It was among the most challenging periods of my life.  I was exhausted, overwhelmed, frightened and often simply resigned to doing poorly at every task I attempted in a given day.

I became a regular fast-food customer, running between the office, my daughter’s soccer games and visits to my mom’s bedside.  My husband picked up nearly all the daily household tasks, leaving him equally exhausted and overwhelmed.

My story pales in comparison with many of the more than 40 million family caregivers throughout the U.S.  These are individuals sleeping on couches in their parents’ homes, working late into the night to keep up with demanding jobs, traveling across country every month, crying, depressed, exhausted and angry at other family members who don’t help enough, at healthcare systems that often feel more barrier-laden than supportive, and at a culture that is clueless about the needs of caregivers – until the very moment that the caregiver is YOU.

These days I talk a lot about the needs of family caregivers.  I believe we as a society, and especially those of us in the helping professions, need to do everything we can to raise the blinds and let the sunlight in.

We need to share stories – ours and theirs.

We need to listen and support; to help families know that they are not the only ones going through challenges that affect their jobs, their marriages, their siblings and their kids.

We need to reach out and join hands, offering our support to strengthen those who are struggling just to get through the day.

Since my own experience, some of which continues on today, I have devoted time and energy to creating resources that other providers can use to support the family caregivers in their universe.  These include the Family Learning Center®, a resource that I love for its ability to provide families with a wealth of helpful information online so that it can be accessed just when its needed – and it will be needed!

It also includes a collection of DVDs so warm, helpful and person-centered that we continue to offer them widely, even to those using online training solutions, as a lending library, a patient-education resource and a resource to use in personal presentations throughout the country today.

You’ll hear me say, over and over, “connect with caregiving families in your community who don’t even know they need you.”  They DO need you, for all the support, encouragement and help you can give them.

Do you have a story to share? Write your comments or story below.




3 Responses to “For Family Caregivers, the challenges are always personal”

  1. rebecca louthan

    I have helped care for my mom and dad who died of Alhziemers 4 years ago he died my mom just overcame cancer of the lung and is surviving well enough. It is a tremendous hardship even as nurse to help with all that you see in their lives and live your own life too.

  2. Allie Valesco

    I helped be my dads caregiver when he was diagnosed with brain cancer. Unfortunately he didn’t win his battle but it does teach you so much in that time. It was hard to live between two homes and taking care of two families..My mom being an Infection Control nurse plus her other jobs just to pay for hospital bills was very grateful to have family around, people my dad knew and was comfortable with…..very rewarding at the same time very sad.

  3. Jennifer T

    I was 17 when daddy had the first seizure. It was just the two of us during my senior year in high school. In a matter of 10 months, we went through brain surgery, radiation, paralysis, and ultimately a funeral. Daddy remained at home the whole time, with a trip to the hospital here and there. I remember the 4am accidents, changing the sheets with him in them, and feeding him medicine crushed in applesauce. He died 26 years ago tomorrow. The healthcare community didn’t offer the assistance then, as it does today. Maybe because I didn’t know to ask. All these years later, I still feel guilty because he deserved better than me, a teenaged caregiver. That being said, I have plenty of appreciation for this program.


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