Identifying as a Care Partner
When your loved one is diagnosed with Parkinson's disease (PD), you probably feel like your life changed overnight. But care partner is a role and an identity that you will grow into. It's important to remember that each person with PD is unique, and so is each care partner.
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As you start the journey, you will need to define what "care partner" will mean for yourself. Because some people do not like the term "caregiver," we have adopted the term "care partner" for anyone who may be a primary caregiver or loved one assisting those living with PD in their life.
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Regardless of the term, it is important that you accept this new role. But it is also important that you recognize your own strengths and weaknesses. Ask yourself, what can I do to help my loved one live a quality life with Parkinson's? What are my limits? And it is ok to have limits. When would I need additional help? And everyone will need additional help.
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As your loved one progresses through stages of Parkinson's, you will progress through stages of caring. Most care partners will take on new tasks and learn new skills. It helps to learn all you can about the disease, so you can participate in healthcare discussions, make informed decisions, and provide emotional and physical support now and as needed into the future. And always remember to consider your own needs for wellness, self-care, and support. It's imperative that you care for yourself to avoid burnout.
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Often, if you are stressed or agitated, your loved one with PD can sense and feel that. It can also impact their response and how they choose to live with Parkinson's. If you find yourself frustrated or snappy, it may be time for a break. Afterall, your loved one can't help their symptoms and they need to be encouraged, not nagged. Your stress and burnout, impacts their feelings and abilities. That is why self-care is so important, not just for you - but the person in your care too.
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Caring for someone with Parkinson's can be both rewarding and challenging. Throughout the process, you will most likely learn a lot about yourself and the person you're caring for. There are many ways care partners can help to make the life of a person with Parkinson's easier. To start, focus on being supportive, encouraging, and positive. Providing your loved one with reassurance, especially in the early stages right after diagnosis, can really help. Remind them that PD progresses slowly in most people, and they can still live a full life. Most importantly, reassure them that you will be with them through every step, and they will not need to face this alone.
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While your loved one has been diagnosed with PD, they are still the same person with PD to act independently and do things themselves and knowing when to do things for them. The person with Parkinson's is still the captain of their ship. You know them better than anyone. Only you can decide when it is best to let them do things for themselves - even if it takes longer, or soothing frustrations by assisting. Communicate with your partner. Ask them what they wish? Then you will better know what cues to pick up on when they would like more assistance. You may be able to offer solutions by breaking down tasks into easier steps if they are having trouble. Just remember to focus on their successes, not their failures.
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One very important thing to keep in mind as a care partner for someone with Parkinson's is that patience goes a long way. You need to remember that things will often take longer than they might have before and trying to rush someone with PD will only get them frustrated and stressed, often slowing them down even more.
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Planning and allowing extra time for things to be done will help everyone to remain calmer. Scheduling is also important, especially when it comes to medications and meals. PD meds need to be taken at specific times before and after meals, so it's very helpful to establish a medication and meal schedule so that it becomes routine. Be sure your loved one with Parkinson's has full input as well.
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There are many resources available for care partners, but the best place to start is with the Parkinson Association of Alabama. We can direct you to your local resources, connect you to support groups in your area, and recommend movement class opportunities available to you and your loved one.
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No one ever feels fully prepared for this journey or anticipates a condition like Parkinson's entering their lives. But your loved one can still live a very quality life with Parkinson's for many, many years. Your role as care partner might just become your biggest purpose and most fulfilling journey in your life.
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Sources:
Parkinson's Foundation. Page 14. Care Partner Identity. Chapter One. Early in the Journey: Your Care Partner Identity. Caring and Coping. A Care Partner's Guide to Parkinson's Disease. "Booklet."
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Marie, Lianna. Page 183. Caring for Someone with PD. Chapter 58. The Complete Guide for People with Parkinson's Disease and their Loved Ones. Purdue University Press, 2022.