The Parkinson’s Care Partner’s Digital Toolbox

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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

get the every victory counts manual for care partners

Do you have the Every Victory Counts Manual for Care Partners! Released in 2021, this resource is available at no cost in print and digital versions. To learn more and request your copy, click here.

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Comments (2)

I am 57 years old and my 89 year old father has lived with a PD diagnosis for about 10 years. My 90 year old mother is his primary caregiver and that is not healthy or sustainable. I recently quit my job and moved back to my hometown to help my mom with care management/giving. Are you aware of a resource that addresses the issues that arise when an adult child has to deal with a caregiver parent who is very controlling and generally resistant to help?

Hi Miriam – Thanks for listening. It sounds like you’re in a really tough spot. On top of the stress you have in caring for your dad, you have the stress of your mom resisting it. I can’t think of a resource right now that addresses this specific situation; however, this article might be a good starting point. The author addresses your issue in one of his responses and tangentially in others. It might be useful to you along this journey. https://www.aarp.org/home-family/caregiving/info-07-2013/family-conflict-and-caregiving-jacobs.html

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