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The Parkinson’s Care Partner’s Digital Toolbox

the-parkinsons-care-partners-digital-toolbox

The Parkinson’s Care Partner’s Digital Toolbox

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.

Calendars/Organizers/Contacts

Communication

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.

General Caregiving

Legal

Meal Planning

Medication/Medical Management

Safety

Self-Care for the Care Partner

Transportation

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.

More Posts in the Parkinson’s Care Partner Series

Rewriting the Rulebook for Parkinson’s Care Partners

The Big 16: What to Say (And What Not to Say) to Someone Who Has Parkinson’s

How to Be the Parkinson’s Care Partner Your Partner Needs

How to Stay Healthy and Avoid Burnout as a Parkinson’s Care Partner

Learn More About How Parkinson’s Affects Families & Relationships

Much more can be found in a powerful new edition of Davis Phinney Foundation’s free Every Victory Counts® manual. The Every Victory Counts manual has an entire section on Parkinson’s and the family along with tools care partners may find useful along their caregiving journey.

It’s jam-packed with up-to-date information about everything Parkinson’s, plus an expanded worksheets and resources section to help you put what you’ve learned into action. Color coding and engaging graphics help guide you through the written material and point you to complementary videos, podcasts and other materials on the Every Victory Counts companion website. And, it is still free of charge thanks to the generosity of our sponsors.

Request your copy of the new Every Victory Counts manual by clicking the button below.

Request Your Complimentary Copy Now

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