In my first semester of college I received the phone call. Mom had a hemorrhagic stroke, was in critical condition, and was being airlifted to Seattle for treatment. Before we hung up, the doctor asked how old I was. He sounded relieved when I told him that I was 18. He needed me to consent to an emergency brain surgery.
The possible complications sounded terrifying, but without the surgery my mom wouldn’t survive. I consented to the operation, not knowing that it would be the first of many decisions I would have to make on my mom’s behalf. That doctor was the first of dozens that I would speak to about my mom’s health.
The next few days were a blur. My only thoughts were about whether or not my mom would wake up from her medically induced coma. It wasn’t until much later that I realized I had just entered a new phase of my life, as a caregiver.
Fast forward 10 years, and I’m pretty close to the “typical” millennial caregiver. In the US, there are close to 10 million millennial caregivers. We are almost a quarter of all family caregivers. The typical millennial caregiver is 27 years old, cares for a 60 year old female relative (most likely their mom), and balances full-time employment with 20 hours a week or more of caregiving tasks.
At 27, I have been a caregiver for 10 years. Hopefully, I'll be a caregiver for many years to come. This is what I wish I had known at 18.
How Can You be Taken Seriously as a Young Caregiver?
Lesson 1: Be Assertive, and You Will Be Taken Seriously
When I was an 18-year-old college freshman, meeting with nursing home administrators and talking to doctors about complicated medical issues was scary and unfamiliar. I was not confident enough to speak up when I noticed something wrong or had questions, and very few people were willing to take the time to explain things to me.
As I got older and gained confidence. I learned about nursing homes and the health care system. I began to express my concerns and opinions about my mom’s care – but people still didn’t always take me seriously.
When I earned my law degree people suddenly took notice of me because I finally knew how to be assertive and persistent.
My best advice for new young caregivers:
- Ageism is difficult to overcome. Be confident and professional so people don’t underestimate you.
- Do your own research. Nobody will have the time to teach you everything you need to know, and knowledge is comforting. For example, I researched dialysis when I learned that my mom would someday need it, so when the time came I knew what to expect and was better prepared to support her.
- Take detailed notes during all meetings. I’ve used my notes to remind me of things to look up, people to contact, and issues to follow up on later.
- Sometimes you will be a pest. Keep asking questions until you get answers, and follow up frequently if your concerns are ignored.
What Does the Future Look Like, Taking Care of Mom?
Lesson 2: Be Flexible About Your Vision of the Future
Millennials are known for delaying or skipping many milestones that were important to previous generations. We’re less likely to own a house, get married, or have children. While some may consider this a sign that millennials are slow to grow up, I think it shows that we are flexible and adaptive.
When I was finishing graduate school, I knew that I wanted to bring my mom home to live with me. She had lived in nursing homes for eight years. She was depressed and lonely, and I was constantly frustrated about the quality of care she was receiving.
Since I didn’t own a home and had no plans to buy one soon, I searched for apartments that were accessible for my mom and close to things she would need. I considered her needs alongside my own because my life was still very flexible.
When mom moved in with me, I was engaged, and the wedding was three months away. Most newlyweds don’t want to live with mom, but I was focused on what worked for me and my family. While some people didn’t understand my decision, my wife, mother, and I were confident in our choice to do things our own way and are happy with the life we’ve built.
I encourage other young caregivers to keep an open mind about your vision of the future. Make decisions based on your values and priorities rather than on what society expects your life to look like.
Do You Have to do What the Nursing Home Says?
Lesson 3: Always Challenge the Status Quo
When I decided to bring my mom home and be a hands-on millennial caregiver, I faced an uphill battle. Most people who live in facilities for years are expected to remain in them for the rest of their lives.
Nursing home administrators and staff told me repeatedly that my mom wasn’t healthy enough to live at home. They said her needs were too significant, and the best she could hope for was living in an adult foster home.
They were telling me to give up on my mother’s dreams.
While foster homes are the right option for some, I knew that my mom would be happiest at home with me. Instead of ignoring the naysayers, I focused on asking them why she couldn’t live at home.
Then, I researched until I found solutions to each of the problems they presented to me.
- Problem: Mom needs a lot of specialized equipment.
- Solution: I figured out how to have that equipment covered by her insurance.
- Problem: Mom needs round-the-clock direct care.
- Solution: I figured out how Medicaid, which was paying her nursing home bills, could pay for home care aids.
I listened to the concerns of the people who didn’t think my plan was possible, but I also knew that I needed to challenge the status quo. In the end, their doubts were the roadmap I used to bring my mom home.
If you’re a caregiver and people are telling you that what you’re asking is impossible, make sure you look closely at why they think that’s the case before you accept their opinions. Oftentimes you’ll find yourself in the position to advocate for something new or different.
You're Taking Care of Mom. Who's Taking Care of You?
Lesson 4: Build Your Self-Care Support System
Caregiving can be lonely. As a millennial caregiver, many of my peers have a lot more freedom, free time, and flexibility than I do.
They can take spontaneous weekend trips to Vegas. For me, travel requires more preparation, late nights out aren’t often an option, and weekends free are rare.
Fortunately, I’ve built a solid support system around me. My mom has two full-time home care aides, and I have a sister who lives nearby who is able to cover for me when I want to go out of town for a few days.
I love spending time with my mom, but after I a while I start to feel burned out, and I’m grateful for the people who make it possible for me to have some time off. The average millennial caregiver provides 20 hours of caregiving a week on top of a full-time job – finding people who can support you and offer respite is crucial.
What's More Natural Than Caring?
Lesson 5: Caregiving is Challenging, Rewarding, and Natural
I don’t know many people my age who are caregivers for aging relatives, but many of my friends are now parents. I find that I relate a lot to my peers who have children – like me, their schedules aren’t as flexible as they used to be, they are on call 24/7, and they’re busy with the day to day care of another person.
Parents my age are just as busy as I am. Yet parenting is celebrated whereas caregiving has a lot of negative associations. I’ve come to see my role as a caregiver as similar to parenthood.
While it is time-consuming, exhausting, and not very glamorous, caregiving is a natural part of life, just as aging is a natural part of life.
Focusing on the challenging aspects of caregiving doesn’t serve me well. Instead, I focus on the opportunity it gives me to slow down, spend time with my family, and know my mom better. I appreciate this time in my life for what it is, and the day to day reality has plenty of joy to offer.