How Can Care Partnering Change over Time?
Just as every person is unique, so too is Parkinson’ s. As Parkinson’ s changes, support needs also change. While those changes look different for everyone, there are some common experiences across the Parkinson’ s journey. You might go through some, all or none of these, and you might face them earlier or later than others tend to.
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Diagnosis and the Early Years
In the early days of Parkinson’ s, movement symptoms may be mild and emotions may run high, rising naturally in response to diagnosis or as part of Parkinson’ s mood changes. The support you provide may be more abstract as you and your loved one adjust to a new normal.
Processing a Parkinson’ s Diagnosis Sharing Parkinson’ s with Others
As you and your loved one work through what this diagnosis means, your role may be focused on offering emotional support. This support can look like:
+ Asking questions to better understand what your loved one is experiencing.
+ Validating their feelings and experiences.
+ Holding a safe, loving and nonjudgmental space for your loved one to do what they need: talk, cry, vent, express worries or fears, or escape Parkinson’ s for a bit.
Processing a Parkinson’ s diagnosis means identifying— and learning to manage— complex, mixed emotions. Some people have a hard time naming emotions and just keep to themselves. Others feel comfortable talking through emotions with someone they trust, while others have trouble sitting with emotions and may act on them without realizing it.
Everyone processes in their own way and in their own time. There’ s no one way to work through emotions; there’ s also no“ wrong” way, but there are ways that are less helpful, such as ignoring emotions or pushing them aside. For more, turn to The Emotional Impact on Care Partners.
The early years bring questions around whether, how and with whom to share the diagnosis. Many choose to keep Parkinson’ s private— some until they’ ve fully processed the diagnosis, others until they feel symptoms are noticeable. Everyone has different reasons for sharing, and different timing for doing so. You can help your loved one think through the pros and cons of opening up and support them when the time is right.
Some care partners say it’ s harder to build their own support system while Parkinson’ s is a secret. They may not be able to fully express their feelings or engage with the Parkinson’ s community. If this is the case, consider speaking one-on-one with other Parkinson’ s or chronic disease care partners, or with a mental health professional.
Reflecting on Your New Role
As you would at the start of any new beginning, give this new role time and attention. That helps set the stage for life as a care partner. Consider these questions:
+ What does being a care partner mean to you and for you?
+ How might care partnering impact relationships with others?
+ How will you make yourself a priority throughout this journey?
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