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Adjusting Expectations


How can I tell if I'm expecting too much / too little from my person with Parkinson's?


This is something care partners struggle with a lot. On the one hand, we want to be as helpful as possible, but on the other hand, we want to help our person maintain independence. Keep in mind that not all struggles are bad. Yes, tasks, activities of daily living, and life or house chores may get done much more quickly if you do them yourself; however, if you take over everything, it may take purpose and meaning away from your person and lead them to feel useless or resentful.


​There's a sweet spot that takes time and experience to figure out. Just know that it is okay for your person to be challenged, and it's okay for you to encourage their independence. The more they can stay fully engaged in their life, the more they will build self-efficacy and resilience. And the more they continue to do on their own, the more control they will feel, not just about their life but about living with Parkinson's.


​Having said that, pay attention to your person. Maybe they have less energy and feel extra tired because they haven't been sleeping or have started a new medication. Or maybe they overdid it the day before in their exercise class. Maybe their fatigue has nothing to do with Parkinson's, and their lack of desire to do anything is a sign that something else is wrong. Pay attention. Notice, and keep the lines of communication open. The better you understand your person with Parkinson's, the better you can set appropriate expectations.


Sources:

The Davis Phinney Foundation. Page 24. How can I tell if I'm expecting too much/too little from my person with Parkinson's? Every Victory Counts for Care Partners. "Manual.: Sixth Edition, 2021.


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