Denise Brown was involved with caregiving long before she became a caregiver. In 1996, she launched Caregiving.com to help those who care for a family member or friend by featuring blogs, weekly words of comforts, daily chats, podcasts, webinars, and other resources, all designed with family caregiving in mind. More than 20 years later, Caregiving.com holds one of the largest online libraries of caregiving stories in the world.
In 2004, Denise became a caregiver herself when her father was diagnosed with bladder cancer. After the cancer spread, in 2015, he had his bladder, kidney, ureter, and prostate removed, which required help with his ostomy needs. After the surgery, he thought he had a heart attack and a stroke, which led to the removal of a blocked carotid artery in his neck. Then, Denise’s mother started bleeding internally, which required further care.
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Denise’s family tried moving her parents into a retirement community, but they hated it. They are now living independently 10 minutes away from Denise, and she is a caregiver for both of them. Luckily, Denise’s involvement with Caregiving.com equipped her with the knowledge to self-identify as a caregiver – something that far too many family caregivers usually do not do.
“Unless you have been a caregiver, seen what it’s like and felt what it’s like, it’s almost impossible to know what it is like,” Denise said. “Many of these topics are hard to explain unless someone has really seen firsthand what frailty looks like and how challenging it can be to get someone up – whether it’s up off the floor or up from the depths of negative emotions. But people who are anywhere in the caregiving journey, whether at the beginning, middle, or end, need to know that there are so many communities out there filled with people who have been there, can relate, and are always more than happy to offer advice or assistance.”
Based on Denise’s firsthand experience, she says it’s important to engage with a support group before you need it, because the worst time to start looking for support is on your worst day, when you haven’t built trust-based relationships and might not be comfortable sharing personal information about your struggles. She also says it’s important to find ways to relax and make self-care a priority. Finally, she recommends that caregivers document what the experience is like, so that they see they’ve had challenges that were difficult, but got past them and figured them out. Finally, she recommends that caregivers document what the experience is like, so that they can show their loved ones that they’ve had challenges that were difficult, but got past them and figured them out.
In the United States, more than 65 million Americans serve as unpaid family caregivers who manage the daily care of a loved one struggling with illness, aging, or disability. From navigating the healthcare system on their loved one’s behalf to serving as that person’s advocate to doctors, pharmacists, and care facility managers, this new role can feel intimidating and highly stressful, especially when making a mistake can have serious consequences on a loved one’s health. The lack of a clear national dialogue around these challenges can also make a caregiver feel as if he or she is struggling all alone — but help is on the way.
Denise’s story is part of Embracing Carers, 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.
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.