Soon after I was diagnosed with Parkinson’s Disease someone was telling Lily that she will be my caregiver. Later that day Lily turned to me and she said, “I will not be your care giver.” She looked me straight in the eyes and continued, “I will be your Care Partner, because we are in this together!” Well, we both thought that she made that phrase up. Here it is eight years later and now it’s a much more common expression to say “Care Partner”.
Care partners can be anyone wanting to help. It’s essential for a care partner to accept help as much as possible for two reasons. First, it’s a reprieve for yourself to not have to stress over things as much, and it gives you more time (either for you to be with your loved one, or for you to take a step back and replenish your energy and attitude.
One resource that we found tremendously beneficial when we were dealing with Lily’s chemo and radiation treatments was having friends and families bring meals. Just coordinating that can be a hassle, but not so with this new website: Take Them a Meal. This was a tremendous resource. We were able to tell the foods or spices we liked and did not like. We were able to tell them where and how to drop off meals. They were able to look and see when a meal was needed and what all you have had so far.
Also, raising a little (or a lot) of money to help with bills is actually a nice way to give those who care a way to help when they are not able to help in more immediate ways. The best website for personal fundraising that we found simple and well managed. Go to Go Fund Me
See the other links and websites we are adding here all the time. Again, remember, it’s a great way to keep your stress down and you love available for the one who needs it most!
Care Partners are the biggest load bearers in the relationship for People With Parkinson’s. They have to help the person manage their life, worry about health issues, in most cases, because the Person With Parkinson’s (PWP) has more challenges in completing days they used to.
At the same time, caregivers NEED to take care of themselves so they can be more healthy and refreshed, instead of worn out trying to do everything alone.
So, here are some resources for all of you who give your best for us to be our all!:
Resources for Parkinson’s Care Partners
- Care Partners Webpage at Davis Phinney
- Davis Phinney Video Links for Care Partners videos on taking time to prioritizing your health and emotional well
- CareMAP (National Parkinson’s Foundation)
- Caring and Coping (about the book you can order a hard copy or download – see below)
- VIDEO: CareMAP: Caring for Someone with Advanced Parkinson’s
- Caregiving for People with Parkinson’s: (from the National Parkinson’s Foundation)
- Advice for Loved Ones and Caregivers (from Michael J. Fox Foundation)
- Caring – European Parkinson’s Disease Association
- Caring in Parkinson’s (from Parkinson’s Disease Foundation)
Downloads for PD Care Partners
- Care and Coping: A Caregivers Guide to Parkinson’s Disease (180 page book)
- Parkinson’s Disease – A Guide for Patients and Families (part of American Academy of Neurology Patient Education)
- Partners in Parkinson’s – Parkinson’s Disease Guide (PDF)
Order copies of Publications on PD
- National Parkinson Foundation (NPF) Publications (order and/or download
- NPF Specialized Topics (order and/or download)
Order Aware in Care Kit (for hospitalization of PD Patient)
- Aware in Care Kit (from National Parkinson’s Foundation)