The most important element in any caregiving partnership is just that: The Partnership.
No amount of hints, tips or tricks you read and none of the techniques you practice or the research either partner does can replace the importance of this sometimes stressful relationship. When caring for a loved one with Parkinson’s disease, open communication and mutual understanding are even more essential as the only thing that’s certain about this terrible disease is the day-to-day uncertainty.
First, it’s a chronic and progressive disease. In general, over time, the symptoms and the challenges faced by people with Parkinson’s are only going to get worse. But complicating this is the fact that its effects can vary significantly from one day to the next. Because a task that’s easily manageable on some days might require considerable assistance at other times, there always exists the risk of misunderstandings. For example:
- Caregivers can feel exploited by being asked to do something they’ve seen their loved one do independently many times.
- Those cared for can feel neglected when suddenly needed support isn’t offered.
- A caregiver can feel underappreciated when their help is refused unexpectedly.
- A Parkinson’s sufferer can feel smothered by an overly solicitous caregiver insisting on doing things he or she can accomplish alone.
These are not uncommon dynamics in some of the Parkinson’s families we serve. At their root is a lack of communication between the caring partners. There will be good days and bad, and having a shared understanding of what kind of day we’re in for can clarify everyone’s expectations.
But even that can be made more difficult by another consequence of the disease. Parkinson’s often makes speaking very difficult. As with other symptoms, your loved one’s capabilities may vary by day so the challenge is communicating clearly and concisely without either misunderstanding or patronizing.
On better days, try to come to clear agreement on how to communicate basic needs so that everyone can keep their dignity and humor. As the disease progresses, you may find that this practice makes sharing much simpler.
When you do have trouble understanding someone with Parkinson’s disease, remember that getting to that first attempt at verbally expressing a complete thought may have been more difficult than you will ever realize. Try to repeat the parts that you understood to save your partner from having to start over from the beginning. “You want me to take the vase where?”
Parkinson’s disease robs too many of too much of their lives and far too quickly. Those who care for people afflicted with it have an incredibly high calling. We stand with all of you who every day make sure that PD never takes their dignity.