Caring is critical
A Parkinson's disease (PD) diagnosis doesn't just happen to one person, it happens to the whole family. Understanding how to support your loved one and your role as care partner can help you plan for the journey ahead.
Nurturing yourself and your relationship
We all know the adage “you can’t help others until you help yourself.” The same is true for caring for a loved one with PD. While your role will change throughout a loved one’s care, it’s important to put your mental and physical health front and center.
Their needs change, so will your role
Parkinson’s symptoms progress differently from person to person. But you can expect the needs of your loved one to change and your role to change, too.
Early stages
In the early stages of PD, you may act as a sounding board or cheerleader for a loved one with a life-changing diagnosis. You will most likely establish new daily routines and take on additional household roles. Together, you should determine your comfort level for sharing your diagnosis and progress with family and friends. During this time, take account of finances and budget for outside care in the later stages of PD, offering you both peace of mind that a plan is in place.
Mid-stage
As PD progresses, so will the level of care. Symptoms may arise that lead your loved one to ask for help completing daily tasks like cleaning the house or paying bills. You’ll also be faced with decisions about insurance, financial issues, and even advocating for your loved one when they can’t advocate for themself. Preserving your well-being is vital, so you can nurture yourself and your relationship during this phase.1
Late stages
The late stages of PD usher in the harshest challenges. Dementia, imparied mobility, speech problems, and mood disturbances may lead your loved one to rely on you for everything from using the bathroom and dressing to visiting their doctors.
During this time, it’s easy to lose sight of yourself. Take a moment or more to visit friends, exercise, and schedule activities you enjoy. There are many support groups and resources available to help you as you navigate caring for a loved one with PD. We’ve listed them below.1
“Knowing the debilitation that he had before [DBS], and what he’s like after the procedure—it’s night and day.”
- Barb—Ken’s wife and care partner, Daytona Beach, FL
Resources for care partners2
Caregiver Action
https://caregiveraction.org/
Caregiver Action Network:
Home Parkinson’s Creative Collective
https://www.neurotalk.org/
Log on to learning
Find webinars hosted by specialists in PD and DBS.
Results from case studies are not necessarily predictive of results in other cases. Results in other cases may vary.
References: 1. Parkinson’s Foundation. Stages of Parkinson’s. Accessed July 1, 2021. https://www.parkinson.org/Understanding-Parkinsons/What-is-Parkinsons/Stages-of-Parkinsons 2. Michael J. Fox Foundation. Support Groups. Accessed July 1, 2021. https://www.michaeljfox.org/news/support-groups