Caregiving 101: What to know as a family caregiver

By Vanessa Steil, BCPA

I was in my mid-twenties when I took on the job of being a caregiver to my grandmother. But it wasn’t until almost a decade later when she transitioned into a long-term care facility that I fully began to understand what the role entails: the long days and sleepless nights wondering if I’d get a phone call that something happened, the constant check-ins with the social worker, elder care attorney, accountant, doctors, and nurses, and the second-guessing that accompanies every decision I had to make on behalf of someone else.

Like for many people, our journey into long-term care started unexpectedly. In the fall of 2021, I could see my 93-year-old grandmother’s cognitive state was slowly declining. Then, in late September, she started complaining about severe back pain. After a couple of weeks, her primary care physician thought it best to take her somewhere where all necessary tests could be performed at once. He suggested the Emergency Room. I never imagined how much our lives were going to change because of that visit—my grandmother would never return to her condo of more than 20 years and my routine would revolve around hers.

While the life transition unfolded over a couple of weeks, it took far longer for all the pieces to fall into place. My grandmother was admitted to the hospital from the ER. After a week-long stay, she went to a sub-acute rehabilitation facility, where she fell on her first night and broke her hip. After a successful hip surgery, she recuperated at a different hospital, then was moved to another sub-acute rehabilitation facility, and when a bed became available, she transitioned to the nursing home part of the building, where she lives now. In the span of those first few weeks, words like ‘sub-acute rehabilitation facility,’ ‘community Medicaid,’ and ‘long-term care,’ became a daily part of my vocabulary.

As a millennial caregiver, I was overwhelmed by the events unfolding around me. I was trying to manage everything, including my grandmother’s care, while holding down a full-time job. These feelings made me wonder: if I as a Board-Certified Patient Advocate, who had gone through my own cancer journey at 26, found navigating the world of caregiving to be such a challenge, how do the nearly 53 million other caregivers in this country do it?

The experience opened my eyes to the caregiving crisis in this country. It is getting worse every day. Our population is aging and the number of professional caregivers can’t keep up. Family caregivers like me fill in some of the voids. At the age of 35, I never thought I would leave a full-time job to oversee my grandmother’s care. Part of my coping strategy was to co-found The Hospital Bar, a community for caregivers, with a fellow caregiver, Eliene Augenbraun. Together, we assemble and share caregiving information we wish we had to make it easier for all of us to navigate our caregiving journeys.

The role of caregiver is the best job and one of the greatest honors I’ve ever had. But still, there are so many things I wish I knew when I started on this journey. So let me offer a few tips for current and future family caregivers:

1. Have caregiving discussions early:

   While it may not be an easy topic to broach, knowing your loved ones’ wishes as they age is critical. It’s also important for your loved one to understand what you can and can’t take on as a caregiver. If you are working a full-time job or have a family, how much of a time commitment can you offer? Would they be more comfortable with an aid at home or in an assisted living facility? Can they afford their preferred long-term care plan and if not, can they do anything now to make it more feasible? These are just a few of the many questions that will need to be addressed, and in most cases, where you will want the advice of seasoned elder care professionals to guide you.

2. Create an estate plan:

   Most people know you need a will, living will, health care proxy, and durable power of attorney as you acquire assets and age. Hopefully, your loved one drafted all those documents and decided who is responsible for executing their wishes medically, financially, and legally. But did you know that 67% of Americans do not have any estate plans? While these documents can be expensive to create, if something happens, they will allow the person your loved one chooses to make decisions about their health and finances. Pro tip: Scan the signed documents and keep them on your phone so they are always easily accessible.

3. Consult trusted professionals:

   There’s more to know than you think when it comes to long-term and end-of-life care. You don’t want to scramble to find appropriate resources in the midst of a crisis (trust me, I know that feeling and it isn’t pleasant). Most people are unaware: Medicare does not pay for long-term care. Medicaid does, but it is only for people without the resources to pay for their own care. Lacking another plan, a caregiver may need to close bank accounts, move money, and sell property to pay for their loved one’s care, perhaps wiping out their life savings. You should consult an accountant and elder care attorney about appropriate legal and financial options to protect your loved ones’ assets.

Becoming a caregiver didn’t just shape my daily routine, it changed my life personally and professionally. I now use my advocacy skills to help others and hopefully empower them to have these important conversations sooner than they think they need to have them. Trust me, the more you know, the more it will benefit you and your loved ones when you need it most.