Key Takeaways
- Caregiving responsibilities increase as Parkinson’s disease progresses.
- Being flexible and checking in can help make high-symptom days easier.
- To plan for care, educating yourself about Parkinson’s is essential.
- To ease caregiving stress, consider joining a caregiver support group.
1. Communicate Honestly and Check in Often
Honest communication is a key component of caregiving for Parkinson’s. It can help you avoid falling into a caregiver-patient dynamic and stay focused on your family bond. Listen to how your loved one feels, let them know how you’re handling things, and work together as you both acclimate to this new caregiving arrangement.
The Hardest Part of Being a Parkinson’s Caregiver
For many caregivers, the hardest part of caring for someone with Parkinson’s disease is witnessing the gradual changes the disease brings. It can feel like an emotional roller coaster to watch a loved one’s abilities decline while you’re also trying to balance caregiving with other parts of your life.
That’s why checking in early and often matters so much. When you’ve already built a habit of setting aside time to talk, it becomes easier to be honest with each another and stay connected during the more difficult moments.
2. Take a Proactive Approach to Your Loved One’s Health
Parkinson’s is a progressive disease with complex symptoms that can affect your loved one’s health in many ways.
Take Medications on Time and as Prescribed
Many Parkinson’s medications need to be taken at specific times to help manage symptoms effectively. Taking a dose late can lead to “off” periods, which may temporarily worsen some symptoms. The most common symptoms of these “off” periods are tremors, changes in gait, and rigidity.
Prioritize Nutrition and Hydration
Some people with Parkinson’s experience changes in appetite and constipation. And, in the later stages of the disease, issues with swallowing may arise. These shifts can make it harder for your loved one to get all the nutrients they need. Meal planning and keeping an eye on daily fluid intake can help ensure they stay well-nourished and hydrated.
Encourage Regular Physical Activity
Regular physical activity helps individuals with Parkinson’s maintain independence by improving balance, flexibility, and mood. Exercise can also reduce symptoms of tremors and stiffness. In fact, research shows that physical activity can improve some of the non-motor symptoms of Parkinson’s, such as depression and fatigue.
Some good exercises to start with include walking, yoga, and tai chi. If your loved one has a physical therapist, incorporate any specific exercises they’ve prescribed to help with posture and balance.
Create a Safe and Supportive Home Environment
As Parkinson’s progresses, balance and mobility challenges may become more noticeable. If you’re seeing these changes, it may be helpful to make some home modifications to help prevent falls.
Consider the following home adjustments to support the safety of a loved one with Parkinson’s:
- Installing grab bars to bathrooms
- Removing rugs and other tripping hazards to keep pathways clear
- Adding nightlights to improve visibility at night
3. Educate Yourself About Caregiving for Parkinson’s Disease
The more you understand about the disease, the more prepared you’ll be to support someone with Parkinson’s. Learning about symptoms and how the disease progresses can help you recognize changes early in your loved one.
It’s important to rely on reputable sources, such as the Parkinson's Foundation for accurate information. Your loved one’s care team may also be able to guide you to helpful resources and educational materials.
4. Attend Appointments with Your Loved One
Going to doctor or physical therapy appointments with your loved one is more than a way to show support—it gives you a chance to ask questions and share any symptom changes you’ve noticed. You may also be more likely to recognize changes in mood or sleep, for example, as a symptom of Parkinson’s.
If your loved one attends physical therapy, try to join these sessions when possible. Observing how the physical therapist works with them can make it easier to follow up with at-home exercises.
5. Manage Insurance
You may already be familiar with your loved one’s insurance policy if you’re caring for a spouse and share an insurance plan. However, if you’re helping a parent, you’ll need to take time to understand their insurance coverage.
It’s important to become familiar with their coverage so you know what to expect when it comes to:
- Prescriptions
- Physical and occupational therapy
- Doctor visits and copays
- Unexpected medical expenses
It’s also always a good idea to track medical expenses and keep receipts organized in case you have questions later.
6. Be Observant and Flexible
Caring for someone with Parkinson’s disease can vary from one day to the next. While the disease is generally progressive, you can have good or bad days at any stage. You can help by adapting to what your loved one can do on any given day.
To show your flexibility, you can:
- Allow your loved one extra time in the day for dressing and eating
- Modify routines to accommodate fatigue
- Adjust when your loved one is frustrated or stressed
Recognizing the signs that your loved one is struggling can make it easier for you to adapt your caregiving style. It can also help to reduce your own stress by giving yourself permission to simplify or pause nonessential tasks that day.
7. Raise Awareness
While you may learn a lot about Parkinson’s quickly after you step into a caregiving role, many people know very little about the disease. Raising awareness about Parkinson’s can educate others and increase community support.
You can contribute to this goal in many ways, such as:
- Participating in Parkinson’s walks or fundraisers
- Sharing educational content
- Talking to friends and family about your caregiving journey
8. Access Local and Online Resources
Parkinson’s caregivers may feel alone at first, especially as you start learning about the disease and navigating the new demands it brings. It can help to connect with other caregivers and seek out reliable resources. Building a strong support network plays an important role in being an effective caregiver for Parkinson’s disease.
How to Find Parkinson’s Caregiver Support
There are several organizations, online and in-person, that offer help for Parkinson’s caregivers and affected families. You can discover resources and Parkinson’s caregiver support groups through these channels:
- American Parkinson Disease Association Chapters. The APDA offers local chapters that host virtual and in-person support groups for families and caregivers affected by Parkinson’s.
- Parkinson’s Buddy Network. This online platform was designed by the Michael J. Fox Foundation to support members of the Parkinson’s community. It offers an online space to engage in meaningful conversations about your journey with Parkinson’s and it offers exclusive resources.
- Parkinson’s Foundation Chapters. This organization offers in-person and virtual resources, support groups, and expert briefing webinars. You can find your nearest chapter or call their helpline at 1-800-4PD-INFO for immediate support.
- Online forums. Platforms like Patientslikeme offer Parkinson’s disease forums where people living with the disease, caregivers, and other affected individuals can learn, share, and connect.
- In-person support. Talk to your doctor for local referrals or research options for resources and support groups. There are many local organizations across the country to support those affected by Parkinson’s. You can also start your own support group to build a local PD community.
9. Seek Parkinson’s Caregiver Support When Needed
Many caregivers put their own needs last, which can lead to exhaustion and eventual burnout. To be the best caregiver for your loved one, it’s key to get support when you need it. For some caregivers, joining a support group provides a valuable outlet and a place to share frustrations with people who understand what you’re going through.
Seeking support can help a Parkinson’s caregiver:
- Reduce feelings of isolation
- Identify new strategies for caregiving
- Offer emotional support
- Find and share resources
10. Prevent Parkinson’s Caregiver Burnout
Caregiver burnout shows up more frequently in caregivers of someone with a chronic, progressive condition like Parkinson’s. In a review on Parkinson’s caregiving, researchers found that PD caregivers experience negative outcomes related to burnout. Parkinson’s caregiver burnout symptoms include:
- Anxiety
- Depression
- Decline in overall health and self-care
- Poor quality of life
- Social isolation and loss of relationships
How to Prevent Parkinson’s Caregiver Burnout
To get relief from burnout symptoms, you may need to bring in some extra support. Consider asking a friend or family member to come help for a couple of hours so you can attend to other important areas of your life.
Or, if you need a longer break, you might want to consider respite care, which offers your loved one the opportunity to try out life in an assisted living community. This can be a great way to see whether assisted living could be a good fit as Parkinson’s progresses.
If you have questions about how Sunrise supports seniors with Parkinson’s, find a Sunrise Senior Living community near you. Our team is happy to answer questions about how we can accommodate your loved one.