We greet Parkinson’s Awareness Month in April with mixed emotions.
Advancements in the fight against Parkinson's disease are made possible by the tireless work of many people including:
- Parkinson’s Disease Foundation
- Michael J. Fox
- Brian Grant
- And many others fighting to #EndParkinsons
While we applaud these efforts, our thoughts remain with the many families who still deal with the disease every day.
Parkinson's Affects the Entire Family
When you think about it, PD is not something that happens to an individual, but to an entire family and support system.
Parkinson’s care is challenging for family caregivers in ways that few diagnoses are. For one, while chronic and progressive, the disease is at best unpredictable. There is no template for how quickly it will progress. It’s also variable: there will be good days and bad days. Days when more support is needed and days when less.
These circumstances wear on loved ones, too. PD changes the lives of those around the one with the disease almost as much as the loved one with the diagnosis.
As we’ve discussed in the Caring Corner blog many times, adequate communication is essential to managing the stress of these changes. All stakeholders—family members, close friends, faith communities among others—need an understanding of the issues faced by everybody in the relationship. Particularly in the case of two people in a committed relationship, it has to be clear from the beginning of this journey that each partner still needs the support of the other.
Find the Help You Deserve
Our caregivers counsel open discussion in these family and relationship dynamics. Understand that the need for a respite from one or another person is not a break in the relationship, but an expression of commitment to refreshing and maintaining it. While this road may seem isolating, there are friends, family and organizations like Caring Hearts ready to support you.
The NPF resource center is a good place to start. Your objective should be the wellbeing of all members of your family: caregiver and loved one, alike. Working together and trusting the resources available can give comfort on this journey.
Until once and for all we #EndParkinsons.