by Cathy Whitlock, Director of Online Communications, National Parkinson Foundation
Taking care of someone with Parkinson’s disease (PD) is a journey. It is natural to have a lot of concerns and questions, and to look for outside support. Whether your loved one’s diagnosis is recent or you are a seasoned care partner, the National Parkinson Foundation (NPF) has resources to help you navigate the various challenges that may arise:
- Toll-free Helpline: Call NPF’s bilingual Helpline at 1-800-4PD-INFO (473-4636) or firstname.lastname@example.org for answers to all of your questions about caregiving, referrals to health professionals and community resources, or emotional support. All calls are confidential and answered by nurses and social workers who are trained experts in Parkinson’s.
- Caring and Coping Manual: Written for caregivers, this free book profiles caregiver roles and activities. Topics include what to expect, care options, activities of daily living, legal and financial planning, and a special section on taking care of yourself as a caregiver. Order your free copy at www.parkinson.org/store.
- PD Library: The PD Library contains a number of articles, checklists, books, DVDs, videos and more that cover a wide variety of topics concerning caring for a loved one with Parkinson’s. Browse these valuable resources at www.parkinson.org/library.
- Caregiver Forum: NPF’s online forum is a place where caregivers of people with Parkinson’s can connect, converse and address their unique concerns. Join the forum at www.parkinson.org/forums.
- Parkinson’s Central Smartphone App: This free, easy-to-use smartphone app gives people with Parkinson’s and care partners access to PD-related information wherever and whenever needed. Download the app at www.parkinson.org/parkinsonscentral.
The National Parkinson Foundation is also here to help you maintain the balance between your daily caregiving activities and your commitment to taking care of yourself. These tips can make daily activities run more smoothly and help reduce caregiver stress and fatigue:
- Take “me” time. You need to take care of your physical and mental health. That means getting plenty of sleep, eating healthy, exercising and socializing with friends.
- Embrace technology. From health apps and health tracking tools to medication reminders and assistive devices, you can make your day-to-day routine easier by exploring technology options beyond the Internet.
- Make small changes. Simple things like using satin sheets on the bed to facilitate turning can help make your days go more smoothly. Special kitchen utensils, such as easy-to-hold angled utensils and high scoop plates, can make mealtime easier.
- Get the help you need. Family, friends and neighbors can all be a source of ongoing support. But if they can only help out in a pinch, consider hiring a cleaning service or home health aide.
Caring for someone with advanced Parkinson’s? Find yourself having more questions than answers? This November, NPF will launch CareMAP, (Managing Advanced PD), an online space where people who provide homecare – from family caregivers to paid caregivers to those who provide care from a distance – can receive helpful guidance.
For more information, visit www.parkinson.org, or call the NPF Helpline at 1-800-4PD-INFO (473-4636).