Over eight years ago, I started Severino Health Advisors to help clients in the Central Pennsylvania region face the challenges of a new or existing health-related problem.
My journey to this new business was born out of my struggles to take care of my own parents – my father with cancer and my mother with dementia.
Navigating the challenges of the cancer arena was difficult, but becoming a caregiver for someone with dementia seemed almost too much to bear at times. Despite my extensive healthcare background, as both a registered nurse and a physician assistant, getting the care my parents needed was often harder than I ever imagined.
In the nine months from the time of my father’s cancer diagnosis to his death, my family was faced with learning such things as how expensive cancer medications can be and how to understand what was and wasn’t covered by his Medicare plan.
We suddenly needed to understand what the ‘donut hole’ was for his medication costs. New medical terms and difficult to pronounce medication names were being tossed around with the hopes we quickly understood what they were talking about.
Fortunately, I could understand most of it as a result of my medical background. What was hard for me was learning the challenges of being a consumer of healthcare.
My family learned a lot about caregiving with my father. We needed those new skills as we faced our next and much longer journey with my mother’s dementia. They often refer to dementia as the long goodbye. That was certainly our story as she slowly changed over the next 14 years.
Most of the time the changes were very subtle; however, any new medical issue would bring with it a significant decline in memory that would never return to baseline. Two big events, a broken hip after a fall in the kitchen, and a diagnosis of shingles resulted in monumental challenges for her memory and for our family as we learned how to be caregivers for someone with dementia.
Here are a few things I learned from these caregiving experiences:
- The healthcare system is your biggest challenge: We were always grateful for the hard work of the medical providers. It was the system that proved challenging. How do you get a timely appointment for a new diagnosis of cancer? How do you get help from the insurance companies? Why is this drug so expensive? It takes a lot of time and perseverance to tackle these challenges. Finding someone who understood the system and had the resources to move past them was a lifesaver.
- Understanding your insurance plan is critical to your future healthcare needs: You really don’t appreciate having a good insurance plan until you are forced to use it. What you thought was a good plan can turn into another headache as you wade through the piles of paperwork and bills. Get a plan you can afford and work with an insurance agent when possible to pick the best fit for your budget and healthcare needs.
- You need to build a team: When faced with a new health challenge you need to make every effort to reach out to family, friends, and other resources to build a team of caregivers. It was important to me to keep my mother in her home and it was a hard thing to do, but we made it happen by having a great team of helpers.
- You need to save for a ‘rainy day’: Getting sick is expensive especially if you need to rely on others to help you with daily care and you want to age in place. My father grew up during the depression and always saved wisely. His frugal tendencies were instrumental in keeping my mother in her home, surrounded by her family and the comforts of home.
- Don’t plan too far in the future: It is always good to have long range plans. However, when you find yourself facing a new illness it may be best to keep your plans short term. Plan for the week or the day. Things have a way of changing in an instant. I spent a lot of sleepless nights worrying about what was going to happen next with my parents. Looking back I realize that I had very little control on when their health would take a turn for the worse.
In January 2022, I will continue to share my knowledge and experience of how best to navigate the challenging healthcare system. Certainly the last two years of a global pandemic have shown us the difficulties of finding the care and resources we need when a family member becomes ill. You don’t need to do it alone. Finding an advocate can make all the difference.
You have lots of wisdom to share, Sue, and I’m glad you are doing this blog!
I appreciate so much all you did to help us navigate those years as our mom and dad declined. Looking forward to reading this blog!
You are one of the most compassionate care providers. Your parents were fortunate. Please continue to provide that same care and expertise to others!