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Changing with Changing Roles
+ Adjust expectations. You may need to let go of standards you previously held. Reframing can help: The bed may not be made as neatly, but it’ s still made.
+ Don’ t assume. If you see your loved one struggling with a task don’ t immediately assume you know why or what to do. Be curious: Why are they struggling? What solutions can you come up with together to preserve your loved one’ s independence?
Patient Council member Denise Coley was diagnosed with Parkinson’ s in 2018 at age 65. She lives with her husband, Bernard, in San Francisco, California.“ I’ ve been preparing for this care partner journey since the day I said‘ I do,’” said Bernard.
As roles shift, your daily routine or household rhythm might be disrupted. Your relationship or individual contributions might feel off-balance, which could spark tension, conflict or resentment— from both of you.
Have regular, honest discussions with your loved one, and work together to redefine roles and responsibilities. These tips can help facilitate those discussions:
+ Be respectful. Avoid language that can make your loved one feel like a child. Phrases like“ You can’ t do this anymore” or“ I’ m in charge of that now” can lead to embarrassment or hurt feelings. Instead, say,“ Let’ s try this differently.” Remember, it can be hard for a person to accept they need help, and just as hard to receive it. For more on communication, turn to Pillar 1: Talk Early, Talk Often.
+ Work as a team. Don’ t take over tasks or make changes behind your loved one’ s back. Don’ t rewash the dishes or remake the bed without their knowledge. And don’ t try to take over too quickly. Encourage their involvement, adapting as needed, to preserve their contributions and independence as long as it is safe to do so. Turn to How Can I Manage Parkinson’ s Day-to-Day? for more.
+ Validate emotions. Losing personal roles and responsibilities, especially ones that hold meaning and purpose, can trigger very real emotions like grief or despair. Hold space for those emotions.
+ Revisit regularly. Changes in roles aren’ t one and done; responsibilities may shift throughout the course of Parkinson’ s. Regularly check-in with your loved one about what’ s working and where you might need to flex— perhaps every few months, around the time of doctor appointments.
Maintaining a Romantic Relationship
Parkinson’ s care partners who have a romantic or intimate relationship with their loved one may find this dynamic evolving over time. Many factors can contribute, such as:
+ Changes in body image.
+ Movement symptoms like tremor, stiffness or dyskinesia( extra, involuntary movement).
+ Non-motor symptoms like changes in mood or desire.
+ Side effects of medication for Parkinson’ s, depression or anxiety.
+ The unpredictability of Parkinson’ s.
+ Care partner stress, exhaustion or uncertainty.
+ Role shifts when a care partner provides hands-on personal and medical care.
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