Caregiving, love and learning to accept help

At the beginning of my third year of college, one of my roommates mentioned that her employer was hiring certified nursing assistants. The position included training and an opportunity to become state-certified. I thought it would be an ideal weekend job. I had always enjoyed working with older adults, and the opportunity seemed aligned with my interests and values.

I completed the training, met the certification requirements and reported for my first day of work. Surprisingly, by the end of my first day, I knew the job was not for me. When my roommate asked why I had quit so quickly, I explained that if I was going to dedicate that much emotional energy to caregiving, I wanted to reserve it for my family. I had no idea how significant that decision would later become.

That same summer, my grandfather suffered a massive heart attack, and I spent much of his recovery helping care for him. The following year, my grandmother underwent triple-bypass surgery, and I helped her through rehabilitation. Years later, when my father became terminally ill, my mother and I cared for him together. Each experience taught me about responsibility, compassion and family. However, none fully prepared me for the caregiving journey I face today.

Navigating the realities of dementia caregiving

I am now the primary caregiver for my mother, who has vascular dementia. Unlike my previous experiences, dementia presents an evolving set of challenges that extend far beyond physical care. As my mother’s memory and decision-making abilities change, I take on more responsibility for her health, safety and daily needs, including coordinating her medical care and finding the supports she needs.

The emotional toll may be the most difficult. There is profound grief in watching someone you love gradually change. The person who once guided and supported you increasingly depends on you. Sometimes my mother recognizes me; sometimes she does not. A familiar and comforting conversation can be followed by painful reminders that her disease continues to progress.

This experience is often described as ambiguous loss: the grief in experiencing the psychological absence or changing presence of someone who is still physically present. It is a unique and often unspoken source of stress for dementia caregivers.

As a social worker, I began this journey with professional knowledge of caregiving and the resources available to families. But personal experience has taught me something professional training could not: knowing how to navigate the system does not mean you should do it alone.

Finding support as a family caregiver

Research has consistently identified increased risks to the mental and physical health of family caregivers, particularly when families lack adequate support. Access to education, counseling and respite services can help reduce caregiver burden and improve quality of life for both caregivers and the individuals receiving care.

Fortunately, Illinois families have places to turn. The Illinois Department of Aging offers caregiver resources, including assessments, education, counseling, support groups, respite resources and connections to community services.

Paying for long-term care can add another layer of stress. Understanding the difference between Medicare and Medicaid is an important first step.

Medicare generally covers medical services and certain short-term rehabilitation or skilled care services, it does not typically pay for ongoing help with everyday personal care. Medicaid may cover, long-term services and supports for individuals who meet financial and functional eligibility requirements.

Families can contact the Illinois Department of Healthcare and Family Services, their local Area Agency on Aging or a benefits counselor to learn about programs and application requirements.

In Illinois, the Community Care Program, administered through the Department on Aging, helps eligible older adults remain in their homes. Depending on individual needs and eligibility, services may include in-home assistance, adult day services and other supports that help delay or prevent nursing home placement.

These resources are important because caregivers need more than encouragement. They need practical assistance, financial guidance, education and opportunities to step away from caregiving responsibilities without guilt.

Learning to accept help

Love alone cannot always sustain the demands of caregiving. Too often, we delay asking for help because we believe we should be able to manage everything ourselves. Sometimes our professional knowledge or personal sense of responsibility makes it even harder.

Between medical appointments and everyday needs, caregivers can lose sight of their own needs. We still have relationships, responsibilities and dreams beyond our caregiving roles.

Caregiving should not mean disappearing in the process.

Looking back on my experiences caring for my grandparents, my father and now my mother, I see caregiving as both an act of devotion and an act of endurance. I have also learned that accepting help is not a weakness. It is part of making care sustainable.

Support may take effort to find, but Illinois families have resources to help them care for their loved ones while also caring for themselves.

Caregiving is an expression of love, but accepting help is also an expression of wisdom. Sometimes the most courageous decision we can make is not to do more, but to reach out, accept support and allow someone else to help carry the responsibility.