My 15-year journey as a successful Parkinson’s family caregiver

A little over 15 years ago, I started a new “job.” There was no interview, and the specific duties and time frame were unclear. Although I was probably not a very likely candidate, the job was mine, whether I liked it or not.

What I knew about the job before starting was that:

• There was no formal training, company manual, or onboarding procedures, and experience was not necessary.
• Compensation and benefits were not offered.
• Lunch breaks, paid time off, and vacations were unavailable, and the schedule was 24/7, which was nonnegotiable.
• The work would be unpredictable, stressful, and often exhausting.
• The work would also be rewarding, fulfilling, and deeply satisfying.
• The client would often be demanding, sick, and, on occasion, grouchy.
• The client would also be grateful, supportive, and easy to work with.
• There are no other co-workers to gossip with or switch shifts; it’s just me.

After all of those clues, what do you think the job described above is? Drum roll, please. It’s a family caregiver.

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On my first day, I took a deep breath and reminded myself that I had never been fired from a job — yet. I also love a challenge, so I was not planning to back down. And since the client mentioned above was my husband and the love of my life, who had been diagnosed with early-onset Parkinson’s disease, I was confident that I was the right person for the position, and not just by default.

After 15 years, I continue to embrace this ever-changing and constantly evolving role. I feel very fortunate to care for my husband, and I believe I have been successful as he has given me glowing reviews (does he really have a choice?). Additionally, I have not been fired — as of today.

So, what did it take to become successful at a job that comes with so many unknowns?

I cannot stress enough the importance of a strong work ethic. It requires being detail-oriented, organized, self-disciplined, dependable, devoted, and adaptable. Every day as a caregiver requires proper planning to maintain a predictable schedule, which is necessary for both the patient and the caregiver.

The job meant learning everything I could about Parkinson’s disease, its symptoms, medications and their side effects, therapies, safety issues, mobility aids, future planning, health insurance, copays, and everything in between. It meant educating myself by speaking with physicians, therapists, other caregivers, and patients. It meant reading about the disease and attending in-person and online conferences and webinars. Knowledge is power, and resources are everywhere. Utilize them.

Mental and physical strength, along with a growth mindset, are key. Stamina and the ability to work hard and stay committed even during difficult times are needed. Being resilient and adaptable even when faced with setbacks is essential. Also important are approaching challenges positively and using them as an opportunity for growth and learning.

The last, but not least, piece of the puzzle is selflessness. Putting the needs of others before your own, without personal gain, is the root of this characteristic. This one is pretty straightforward; all it takes is showing empathy, compassion, and kindness toward your loved one and their situation. However, true selflessness also entails caring for yourself, without ignoring your own personal needs and well-being. Remember, your health and happiness are just as important as the person you’re caring for.

A predictably unpredictable journey

Many caregivers today stumbled into this role to assist a friend, neighbor, spouse, child, or family member who needed some form of care. This job might be temporary, after a surgery or an accident, and it may evolve slowly or quickly after a diagnosis. It is predictably unpredictable, and you are not alone in navigating this journey.

Regardless of the specifics or details of your caregiving journey, it will likely be challenging, especially since many caregivers lack formal training. The only real training we have happens on the job, learning by doing.

If you’re feeling lost, remember my personal keys to navigating the caregiving path without a map or directions: a strong work ethic, education, strength, and selflessness. I hope this will help to guide you on your way.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.