Lessons I’ve learned while being a Parkinson’s caregiver

Caregiving for a loved one is one of the most challenging, demanding, and often frustrating jobs that I can think of. My husband, Eric, and I never anticipated that I’d be his caregiver, but Parkinson’s disease changed our reality. I’ve learned that caring for someone is one of the purest acts of love you can do.

As I reflect on what we’ve been through since his Parkinson’s diagnosis in 2014, I realize that I’ve learned several lessons from caregiving that I’d like to share with you.

Community-mindedness: I’m more community-minded now that I’m a caregiver. The proverb “It takes a village” comes to mind, as villagers impart expertise, knowledge, and wisdom while maintaining traditions. While the saying is frequently associated with raising a child, the same principles apply when dealing with Parkinson’s disease. I rely heavily on our village, which includes members of our immediate family, friends who are like family, those in my writing group, our church family, neighbors, and others in the tremendous Parkinson’s community. These people boost our spirits, offer support, impart wisdom, provide guidance, create understanding, and share their love.

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Jill and Eric Hammergren on their wedding day on June 24, 1995. (Courtesy of Jill Hammergren)

Creative and critical thinking: I’m a naturally creative person and think critically about our world. These skills and life lessons suit me as a caregiver. When facing difficult situations while caring for Eric, I lean on my creativity to manage everything. I must think critically about what best serves him and what I should let others handle.

Mental health awareness: Parkinson’s drains both of us mentally. As his caregiver, I think I’m more aware of our mental health needs. I’ve incorporated counseling, journaling, meditation, and other self-care practices into my routines. I also recently added positive messaging, lessons, and actions to our daily lives. I push, prod, and promote Eric’s mental well-being with exercise, acknowledgments of joy and gratitude, and being present in the moment.

Patience and grace: These are the two things I most struggle with, both in terms of Eric and myself. It’s a work in progress.

Perseverance and bravery: Caregiving teaches me to persevere through every adversity Parkinson’s throws at us. For 34 years, I’ve volunteered for Special Olympics. I’m awed by the athletes’ abilities and perseverance. Before every competition, they take an oath: “Let me win. But if I cannot win, let me be brave in the attempt.”

Resilience: Caregiving teaches resilience. Parkinson’s has robbed us of everything we knew about ourselves, including our personalities and our relationships with each other and with family and friends. Yet, we are resilient. I’m happy to announce that, in June, Eric and I will celebrate 30 years of marriage.

Resourcefulness: Resourcefulness is required when caring for a loved one with a debilitating disease, raising children, or caring for aging parents, grandparents, siblings, or other family members. I’m resourceful in connecting with people, places, and available resources. As Eric’s caregiver, I’ve become more vigilant in finding what we need to help us navigate the challenges. I’ve also learned to ask for help and to say yes when assistance is offered.

Strength: Caregiving teaches, builds, and requires mental, physical, and spiritual strength. I’ve sometimes felt broken in all of these areas. Eric’s experiences with Parkinson’s have been brutal when rigidity and bradykinesia appeared, forcing him to drag his right leg and foot when he walked, which affected his overall gait and balance. While Eric’s Parkinson’s is not tremor-dominated, he had a slight twitch in his thumb in the early stages of this neurodegenerative disease.

Ever since Eric was diagnosed with Guillain-Barré syndrome, a rare condition that affects the peripheral nerves, caregiving for him has become more physically demanding than I’d expected.

Jill and Eric Hammergren on their 29th wedding anniversary in 2024. (Courtesy of Jill Hammergren)

I often call myself Eric’s Sherpa. I’m neither a Tibetan nor a guide on mountainous treks in Nepal, but I do carry everything for Eric. My load includes his medications, the liquids he needs every three hours to stay hydrated, and his boxing gear for Rock Steady Boxing. I regularly lift and fold his rollator and take it in and out of our vehicle and house. Because his mobility is restricted, I assist him off the couch, out of a chair, on and off the toilet, and in and out of bed. I also sometimes help with his hygiene and dressing. I’ve learned that I’m stronger than I thought and didn’t have to go to the gym to get that way.

Although we might not always win, we’ll continue the long fight against Parkinson’s by persevering and being brave when we encounter this journey’s unknowns.

What lessons have you learned? Please share in the comments below. 

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.