Vacation vs. Guilt – Difficult Choices for the Full-Time Caregiver
Many individuals bear the mantle of caregiver, responsible in some form for the care of an aging parent. In the United States, there are an estimated 65.7 million unpaid family caregivers providing care to someone who is ill, disabled, or aged. For some carers, that takes a immediate, physical form as an aging relative lives with them. For many others, such as Dyan Alexander, they may not provide direct physical support, but perform the complex and unending task of coordinating care.
When Ms. Alexander’s mother was 85, she fell and broke her hip. The mobility challenges made it impossible for her mother, Pat LoCascio and her husband Charles, to continue to live independently. The LoCascio’s moved into an assisted living facility in Florida, then after Charles’ death, Ms. Alexander and her sister moved their mother up to Annapolis Maryland where Alexander lives.
Alexander shares, “It fell on me to be the primary liaison for all of her healthcare and living needs.“ She interviewed assisted living facilities, became a self-taught expert in Medicare, and visited her mother nearly every day. All this was added to an already full plate of responsibilities. Alexander was working full-time and often cared for her granddaughter. One evening Alexander had her granddaughter over for a much-anticipated slumber party, when she received word that he mother had fallen and was being transported to the hospital. Her attention quickly went from tea parties to triage.
During the year-and-a-half of her mother’s illnesses,which included COPD and congestive heart failure, Alexander didn’t take any vacations. On the rare occasions she would get away for a rushed, guilty weekend, travel was anything but relaxing.
Lisa Winstel, Chief Operating Officer of Caregiver Action Network, notes that Alexander’s story is far too typical. “Caregivers are seeking to perform an enormous task with finite resources. They often end up shorting themselves on the very resources—such as rest and medical care—that they need to perform this role effectively for a sustained amount of time.”
One organization is seeking to bridge that gap between carers and resources. Launched in 2017, Embracing Carers is a global initiative led by EMD Serono, in collaboration with leading caregiver organizations around the world to increase awareness and discussion about the often-overlooked needs of caregivers. Embracing Carers seeks to provide resources and support to these vital carers.
Pat LoCascio passed away several weeks ago from pneumonia. Alexander has to grieve for her mother while continuing to coordinate memorials and discharge duties as her mother’s power of attorney. “I am exhausted,” Alexander confesses.
About EMBRACING CARERS TM
Launched in 2017, Embracing CarersTM is a global initiative led by Merck KGaA, Darmstadt, Germany, in collaboration with leading caregiver organizations around the world to increase awareness and discussion about the often-overlooked needs of caregivers. It is understood that caregivers play a crucial role in the lives of patients. What is less understood are caregivers’ needs for resources and support focused on improving their own health and well-being. And while significant progress has been made in certain areas/geographies, serious gaps remain. Embracing Carers™ addresses this by highlighting the unmet needs of caregivers’ within the US and around the world; by empowering caregivers to advocate for their own health and wellbeing, and by driving a call to action for support of caregivers including support within healthcare systems.
Caregiving in the United States
In the US, it is estimated that there are 65.7 million unpaid family caregivers providing care to someone who is ill, disabled, or aged. Each day, in every community around the world, people provide care for those who need it most, often putting their own lives on hold or altering their daily routines to ensure that an ill or disabled loved one or friend has the support they need.
Known as caregivers, these individuals often get little support or recognition for the work they do, but they are essential for improving patient outcomes. Caregivers are not limited by culture or country — they are universal, sharing common traits and facing common challenges.
Beyond today, it is estimated that the global population of people aged 60 years and older will more than double, from 900 million in 2015 to about 2 billion in 2050.