Often times as a care partner to someone with Parkinson’s, you need a solution to a problem, but you don’t have hours on end to search for it.
That’s what this toolbox is all about.
It includes a few worksheets, a few apps, a few websites and a few nuggets of wisdom from people who have been caring for someone with Parkinson’s for long enough to know how valuable time is. And how time-consuming and emotionally and physically taxing being a care partner can be when you don’t have the formal training or resources you need.
According to the National Alliance for Caregiving, 86% of care partners are untrained. They simply learn as they go. But it’s no small learning curve. Care partners for people with Parkinson’s often must learn how to:
- Manage medications, appointments and care teams
- Manage outsourced and respite care
- Switch roles on a dime - from spouse to care partner
- Adapt or modify a home to be safe and accessible
- Navigate a complex healthcare system
- Become an advocate for their loved one
- Speak loudly when necessary
- Have uncomfortable conversations
- Battle insurance denials
- Do background research on billing codes
- Ask a lot of questions to people who aren’t thrilled to give answers (i.e. overworked billing clerks)
- Question medications and treatment plans
- Make end of life plans
- Be the executor of wills and trusts
It’s no wonder that one report by the National Alliance for Caregiving and the AARP found that the average care partner spends 19 hours a week providing support to their loved ones. And with those hours typically stacked on top of a full-time job, shortcuts can be a care partner’s dream.
In light of that, here’s our new Davis Phinney Foundation Parkinson’s Care Partner Digital Toolbox.
Some of these items will be helpful no matter what “stage” your person with Parkinson’s is in, and some of them will be more helpful as their needs increase. This toolbox is a starting point and a living document that you can print out, keep close and add to along the journey.
To honor your time and energy, we’ve included only our best recommendations and resources. While some of these would be helpful to a person with Parkinson’s as well, this toolkit was designed with you, the care partner, in mind. (For over 30 worksheets and resources for a person with Parkinson’s, go here.)
Be sure to bookmark this digital care partner’s toolbox so it’s right at your fingertips whenever you need it.
Note: The categories and items within each are organized alphabetically, not in order of rank. Items that are starred (*) are ones we consider must-haves.
- Medical Providers Worksheet
- Wellness Team Contact Information Worksheet
- CaringBridge.org (A tool that helps you share your health story with friends and family.)
- Tyze.com (An online tool that brings people together around someone receiving care.)
- How to assess and maintain a strong relationship with the person you’re caring for
- How to help and support your person with Parkinson’s as they make important decisions
- How to talk to your adult children about Parkinson’s
- How to talk to young children about Parkinson’s
- How to talk about the financial future of your person with Parkinson’s
- When to intervene as a care partner
Digital Legacy Management
These are tools that offer a safe way for you to share passwords in case you need to jump into the accounts of your person with Parkinson’s.
- Consent to Disclose Information
- Healthcare Durable Power of Attorney
- How to designate a personal representative
- FMLA (Family and Medical Leave Act)
- *Daily Medication Log
- *Overall Medication Log
- *Personal Health Record - How to create and choose one
- Care Partner Home Care Checklist
- *Home Safety Checklist (room by room safety checks)
- TellMyGeo (connecting with each other via your mobile phones)
Self-Care for the Care Partner
- 10-minute daily meditation app
- C is for Caregiver (a beautiful book created especially for care partners)
- Depression and caregiving
- Family care partner alliance
- How to determine what you need as a care partner
- How to reset
- How to set boundaries
- How to start a support group
- How to stay grounded and reduce overwhelm
- Taking Care of You: Self care for family care partners
- When to say “no” and why
We’d love to know, as a care partner to someone with Parkinson’s, is there anything you would add to this list? Is there a tool or a resource you’ve used that has been invaluable to you as a care partner? If so, share it in the comments and we’ll update our list.