
By: Allyson Berthiaume, senior healthcare data analyst, MHA Keystone Center
November is National Family Caregiver Month, which recognizes the 63+ million individuals across the United States who support loved ones with health needs every day. I am one of the 63 million and provide care for both of my parents.
When people visualize a caregiver’s responsibilities, they often picture physical caregiving, but this is just one aspect of our complex role. We also shoulder emotional, financial and logistical responsibilities that often go unseen. As our population continues to age, and the number of caregivers continues to increase along with it, it’s more important than ever that we address the challenges that are leading to caregiver burnout and declining caregiver health.
I came into my caregiving role gradually about four or five years ago, when I began taking both of my parents to their healthcare appointments, and I noticed a minor decline in their comprehension and health literacy. At first, I was simply joining their appointments to ensure they understood their healthcare plans. However, as time has passed, my responsibilities have drastically changed.
When my dad was hospitalized with severe pneumonia two years ago, there were times when we didn’t know if he would make it out of the hospital. In those frightening moments, I realized I had no authority to do anything for him as an informal caregiver. After this experience, I reached out to an attorney to have Durable Power of Attorney paperwork created for both of my parents.
With these legal permissions, I was able to fully assess their living conditions and quickly realized they needed much more support. While I was on top of their healthcare needs, I was unaware how many other aspects of their day-to-day lives were being neglected. Over the past two years, I have added managing medications, finances and household tasks to my role. And earlier this year, when my mom was diagnosed with dementia and breast cancer two months apart, my role’s complexity increased again.
Learning to navigate a parent/child relationship with someone with dementia is more complex than I could ever have imagined. I am a work in progress, trying to learn a new way to communicate and care for my mom. This causes a lot of “dis – ease”, because of the frustration, confusion and fear from both of us. I often see this role referred to as rewarding, but it’s hard for me to view it in that light. I’ve lost the child/parent dynamic with both of my parents, and that has been incredibly painful to accept.
Although there are many resources available to help, the system has several flaws that create an additional burden for caregivers. As a healthcare professional, I believe it is our responsibility to reduce the administrative burden on caregivers, allowing them the opportunity to focus on their true caregiving responsibilities rather than chasing down information.
I am fortunate to live in a community where we have a single electronic health record system that allows my parents’ providers to view their full medical history in one place. However, this isn’t the case for all caregivers, and it has not alleviated the care coordination burden. I have attempted to work with a case worker to manage communication between providers, but even the case worker experienced inconsistent communication.
Home care is another service that could drastically reduce burden, but my family is one of many that makes too much to qualify for financial assistance, yet not enough to afford the cost out of pocket.
These are complex problems that will require systemic change and cross-sector collaboration. I am encouraged to see many health systems implementing caregiver navigation programs, and I am confident that with continued dialogue, we can improve the experience of caregivers for the better.
To learn more about National Caregiver Month and how to support caregivers, visit Caregiver Action Network.











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