Recognizing the burden of being a caregiver and need for support.

I was thankful to have an opportunity to make amends with my mom before she went on hospice. A gift I know a lot of people are not fortunate to receive. My mom and I had struggled with a tense relationship compounded by my caregiver burnout.

Caregiving is a complex and often overwhelming responsibility. For many, it’s an obligation taken on with love, but for some, it can feel like an insurmountable burden. Family caregivers often find themselves juggling the weight of supporting a loved one with chronic illness, aging, or disability while managing their own emotional, physical, and financial needs. What is often not recognized is the profound toll caregiving takes on a person’s well-being, a subject I wish I had understood sooner in my own caregiving journey.

Growing up in a northern Hispanic culture in New Mexico, I experienced caregiving firsthand—not just as a recipient, but as a caretaker at a young age. Today, I want to share my personal experience as a caregiver, the lessons I learned, and how I eventually discovered much-needed resources that can support others facing similar struggles. This is not just my story, but the story of millions who feel alone in their caregiving responsibilities.

A Story of Generations: Caregiving as Part of Life

One of the few pictures I have with my parents, taken in 2004.

In my culture, caregiving has always been a family affair. It was common for grandparents to take in their grandchildren, particularly the eldest, to ensure they were cared for while parents worked or navigated their own struggles. This practice was ingrained in me from a young age. I lived with my grandparents, whom I lovingly call “mom” and “dad” to this day, from the moment I was born.

While this arrangement may sound quaint to some, it was far from easy for me as a child. My grandparents, products of the Depression Era and staunch Roman Catholics, had very different ways of raising me. I often felt misunderstood and isolated, especially as I struggled to connect with their traditional, no-nonsense approach to life. Their love was given with an iron fist; affection was sparse, and emotions were rarely expressed, unless it was anger and punishment. I now understand the complexities of their experiences—growing up in an era of hardship and trauma, especially my father, who fought in a world war, struggled with alcoholism, and had little time or energy to raise a child.

As I grew older, my biological mother’s own struggles became clear to me. A free spirit in her youth, she was young, vulnerable, and overwhelmed with the prospect of having to raise a child at the age of 19. This is when my grandparents swooped in. I often felt as though my grandparents took me in out of a sense of obligation more than love. And although they provided for me in ways that were important, I never felt like an active participant in my own life growing up. There were many events and instances where I felt betrayed in the lack of protection and reassurance. My sense of resentment would only grow as I matured.

It wasn’t until later in life, when I began caregiving for my own parent, that I truly understood the complexities of the role I didn't plan on sighing up for. The caregiving cycle turned, and I found myself taking on responsibilities I never thought I would. What I now realize is that caregiving, for all its challenges, is a profound and intimate act of love, even when it comes with deep emotional struggles. Struggles that other family and friends cannot understand, or maybe even care too. Some only adding to the crippling weight of guilt with judgement and no real resolution or support.

The Hidden Cost of Caregiving: Emotional, Physical, and Financial Toll

As a caregiver, the emotional weight is often the hardest to bear. In addition to the stress of providing care for a loved one, caregivers often face guilt, burnout, and physical exhaustion. I know this from my experience of caring for my mom after I moved her from New Mexico to Washington state in 2016.

Despite her being relatively independent, my mom needed help with basic tasks like walking up and down the stairs, cooking, showering, and sometimes toileting. Even as a seasoned nurse by the time she moved in with me, there were things I had to help my mother with that were downright uncomfortable for the both of us. There were countless doctor’s appointments, medical expenses, and specialized equipment I had to purchase out of pocket—things that most people in her position would not be able to afford without the help of a caregiver. The cost of caregiving can quickly spiral out of control, and for many caregivers, it comes at the cost of their own personal dreams and aspirations. I had to put my life on hold to support my mom, a sacrifice I know many caregivers can relate to.

Financial Impact of Caregiving

The financial strain of caregiving is overwhelming for many. According to a 2021 study, caregivers in the United States spend an average of $7,242 each year out-of-pocket on caregiving expenses. That’s nearly 26% of their annual income. Caregivers, especially those who are female, often face this financial burden alone. In Washington state alone, caregivers provided $16.8 billion worth of unpaid care in 2021. Many caregivers must balance the costs of medications, adaptive equipment, and frequent medical visits with their own living expenses. Often, these out-of-pocket expenses are not covered by insurance, leaving caregivers to bear the weight alone.

In addition to the financial costs, caregivers also face a significant loss in wages. Many caregivers, like myself, have to reduce or eliminate their working hours to accommodate caregiving responsibilities, which creates a cascade of financial instability.

The Hidden Cost: Health and Well-Being

The toll caregiving takes on one’s mental, physical, and emotional health is rarely discussed. According to the Caregiver Action Network (CAN), 23% of caregivers who have been providing care for five years or more report that their health is fair or poor. This chronic stress can lead to severe burnout, anxiety, depression, and even physical ailments such as high blood pressure or weakened immune systems. In fact, studies show that the stress from caregiving can affect the immune system for up to three years after caregiving has ended.

I often felt like I was losing myself, emotionally drained, physically exhausted, and mentally worn out. The sense of guilt was also pervasive. Even when I knew I was doing my best, I questioned if I was doing enough, wondering if my decisions were right for my mom and for myself.

Understanding Caregiver Burnout: A Universal Struggle

One of the most important lessons I learned during my time as a caregiver was that I wasn’t alone in feeling overwhelmed. Caregiver burnout is a very real issue that affects millions of people. It can affect anyone, whether they are caring for an aging parent, a disabled spouse, or a child with special needs. Caregiving is not just a task; it’s an emotional, physical, and psychological journey that takes a profound toll on your well-being.

In 2019, a Belgian study explored the complex dynamics of caregiver burnout. The study developed a framework that identifies key factors contributing to caregiver burnout, including:

Caregiver’s Well-Being: The emotional and physical health of caregivers is central to understanding burnout.
The Caregiving Context: Factors like the severity of the loved one’s condition, caregiving duration, and available personal resources can influence burnout risk.
Social Dynamics: Strong social support is critical in alleviating some of the strain caregivers experience.
Psychological Strain: Guilt, stress, and feelings of being overwhelmed all contribute to the mental load of caregiving.

It became clear to me that burnout wasn’t just about personal failure; it was a systemic issue that needed more attention. When I was deep in the trenches, I didn’t have anyone to turn to for help. There was no one to walk me through the process, to help me understand how to access support or financial assistance. This is a reality for many caregivers, which is why it’s so important to recognize burnout early and seek help.

Finding Support: Resources and Organizations for Caregivers

I was lucky to eventually discover resources and support networks that could help. If you are feeling the weight of caregiving, I want you to know that there is help available. Here are some valuable organizations that provide support, information, and services for family caregivers:

Caregiver Action Network (CAN)
Provides education, support, and advocacy for family caregivers. Offers tips on managing caregiving duties, health and wellness advice, and legal/financial assistance.
Caregiver Action Network
Family Caregiver Alliance (FCA)
Offers caregiver education, online resources, and a state-by-state resource guide.
Family Caregiver Alliance
National Alliance for Caregiving (NAC)
Provides research, advocacy, and public education for caregivers.
National Alliance for Caregiving
AARP Family Caregiving Resources
A range of caregiving resources, including advice on health care, managing tasks, and planning for the future.
AARP Caregiving Resources
Alzheimer’s Association
Offers support and resources for caregivers of people with Alzheimer’s and dementia.
Alzheimer’s Association
Respite Care Providers Network
Offers resources for caregivers seeking respite care.
Respite Care Providers Network
National Family Caregiver Support Program (NFCSP)
Offers support like respite care, education, and financial assistance.
National Family Caregiver Support Program

These organizations can offer a range of support, from financial aid to emotional support and respite care. It’s vital to remember that caregiving doesn’t have to be an isolating experience. Seeking help and finding resources is not only okay—it’s necessary!

You Are Not Alone

My mom sitting in her favorite chair in her assisted living apartment. She loved having her own space and freedom. She always caught me up on the latest "chisme". It was always fun to listen to her tell stories old and new. — My mom sitting in her favorite chair in her assisted living apartment. She was so happy and proud of it. I would visit her often and she would catch me up on her latest news.

When I found out I was pregnant with my son, my mom told me she wanted to move to assisted living. She knew, from the many arguments and outbursts we'd shared, that she didn’t want to feel like a burden. Mostly, she wanted me to focus on my new family. Getting her into assisted living took almost a year, and navigating the system wasn’t easy. If it would help anyone, I’m happy to share that part of the story.

I struggled deeply with conflicting feelings—relief, guilt, freedom, failure—but I was also grateful that she made the decision. She lived in assisted living from September 2022 until her passing in April 2023. She seemed to truly enjoy it, making friends and participating in community events and field trips. More importantly, it gave us the space to forgive each other. To forgive each other for things said, done, left unsaid, and everything in between.

I am beyond grateful that I had the chance to make amends with my mom and, though it was short, to have a loving relationship with her again.

If you are currently caregiving and feeling overwhelmed, know that you are not alone. The weight of caregiving can be unbearable at times, and burnout is real. But there is hope, and resources are available to help you navigate this journey. I encourage you to reach out to the organizations listed above, and talk to others who understand what you are going through.

Most importantly, don’t neglect your own health and well-being. Caregiving is a selfless act, but you must care for yourself in order to continue caring for others. If you are struggling, seek help. Talk to a counselor, reach out to your primary care doctor, or visit your local emergency room if things become too overwhelming.

This experience has shown me the power of support networks and the importance of asking for help. I hope anyone reading this who feels lost or isolated can find comfort in knowing that you are seen, you are heard, and there is help out there.