Caring for someone with Parkinson’s disease is a journey of patience, love, and resilience. Parkinson’s, a progressive neurological disorder, is often recognized by its most visible symptoms — tremors, muscle stiffness, fatigue, and mobility challenges. But the emotional toll of the disease reaches far beyond the patient. Behind every individual living with Parkinson’s is a caregiver — often a spouse, adult child, or close friend — whose support is vital, yet whose own needs can easily go unnoticed.
“When someone is diagnosed with Parkinson’s disease, it doesn’t just affect one person — it affects the entire family. We want caregivers to know that they are not alone, and we are here to support them.”
- Theresa Stern, MPT, executive director, Neurosciences Institute, MemorialCare Orange Coast Medical Center
As the disease progresses, the demands on caregivers increase significantly. The initial stages of Parkinson’s may involve assisting with small tasks, such as buttoning a shirt or remembering to take medication. However, as the disease advances, so do the symptoms and side effects, which make the caregiving role more physically and emotionally demanding. Caregivers often find themselves taking on more responsibilities, from helping with daily activities to providing emotional support.
“One of the biggest challenges is that Parkinson’s is unpredictable,” explains Stern. “Symptoms can fluctuate daily, even hourly, which makes routine and structure both important and difficult to maintain.”
This unpredictability can be particularly challenging for caregivers, who must constantly adapt to their loved one’s changing needs. The physical symptoms, such as slowness of movement, balance issues, and fatigue, can make once-simple activities time-consuming or even impossible without help. For caregivers, this means being constantly “on call,” ready to assist at a moment’s notice.
The emotional toll on caregivers is also significant. They may experience feelings of frustration, helplessness, and isolation as they navigate the complexities of Parkinson’s disease. It is crucial for caregivers to seek support and resources to help them manage their own well-being while providing care for their loved one.
Practical Tips for Managing Daily Challenges
While each person’s experience with Parkinson’s is different, here are several strategies that can help caregivers manage day-to-day care:
- Establish Routines: Consistency can provide comfort for both the caregiver and the patient. A daily routine — including meals, medications, and exercise — can reduce confusion and help manage symptoms.
- Encourage Movement: Regular physical activity can help slow symptom progression and improve mood. This doesn’t have to be strenuous — simple stretching, walking, gardening, or physical therapy exercises can make a big difference.
- Use Adaptive Tools: There are many tools designed to make daily activities easier, from weighted utensils for eating to chairs with lift assistance. Occupational therapists and physical therapists can recommend personalized solutions.
- Communicate with Empathy: Parkinson’s can affect speech, facial expression, and mood. Practice patience and listen actively. Sometimes, just being present is more helpful than finding the right words.
- Prepare for Appointments: Keep a journal of symptoms, medication effects, and questions to bring to doctor’s visits. Caregivers often serve as an extra set of eyes and ears for physicians.
Don’t Forget the Caregiver
The physical and emotional toll of caregiving cannot be overstated. Caregivers commonly experience:
- Depression and anxiety
- Chronic stress
- Grief and anticipatory loss
- Social isolation
- Fatigue and sleep disruption
- Neglect of their own health
“Caregivers often feel guilty about prioritizing their health. It is essential to understand that caregiving is a marathon, not a sprint. Taking care of oneself enables better care for the loved one. By acknowledging their own limits and needs, caregivers create a healthier balance between caregiving responsibilities and personal well-being.”
- Theresa Stern
Support Starts Here: Resources at Orange Coast Medical Center
MemorialCare Orange Coast Medical Center acknowledges that Parkinson's disease impacts both patients and their families, offering comprehensive support for both.
Support services include:
- Parkinson’s Carepartner Support Group
- Parkinson’s Disease Support Group
- Young-onset Parkinson’s Disease Support Group
These support groups provide a space for sharing experiences, gaining insights, and building a community of people who understand the challenges associated with Parkinson's disease. The Parkinson’s Carepartner Support Group is designed to help caregivers come to a better understanding of Parkinson’s disease. Participants will learn tools for providing care, communicating with loved ones, and taking better care of themselves. The Parkinson’s Disease Support Group is designed to provide patients and their families with education on Parkinson's disease and a time to share and learn with our Parkinson's community. The Young-Onset Parkinson’s Disease Support Group offers tailored support for individuals diagnosed before the age of 60, addressing unique aspects of early onset.
Caregivers should seek help when needed from support groups, friends, or professional care.
"Don't wait for a crisis to ask for help. Community resources can make this journey more manageable,” says Stern. “Utilizing these resources can prevent burnout and ensure that both patients and caregivers maintain a good quality of life. Support networks can offer emotional relief, practical advice, and encouragement, making the journey with Parkinson's disease less isolating and more manageable.”
Parkinson’s disease can bring uncertainty, but it also brings strength, community, and moments of connection. As caregivers, individuals are a cornerstone of their loved one’s well-being. While the role comes with undeniable challenges, it also comes with deep rewards — and they don’t have to walk this path alone.
During Parkinson’s Awareness Month and beyond, it is important to remember that support is available. Whether through support groups or tailored care plans, MemorialCare Orange Coast Medical Center is committed to assisting caregivers. Support groups provide a space to share experiences and advice with others who understand what caregivers are going through, while tailored care plans ensure that both caregivers and their loved ones receive comprehensive and personalized care.
“We want every caregiver to know that they are valued, supported, and their health matters too. Together, we can face Parkinson’s with knowledge, strength, and hope.”
- Theresa Stern
Remember, self-care is vital. Taking time for themselves, engaging in activities they enjoy, and reaching out for help when needed are all crucial aspects of being an effective caregiver. Caregivers are not alone in this journey; a network of support is available to guide and assist them every step of the way.