There’s a saying in the medical community that if you’ve seen one person with Parkinson’s, you’ve seen… one person with Parkinson’s. The same can be said for PD caregivers. Experiences with the disease vary widely, and symptoms change over time. That means caregiving can be unpredictable, too, and sometimes very time-consuming.
Of course, caregiving brings its moments of joy and humour, too. It’s a complex experience, one that can be hard for those who don’t provide care to understand. Members of the MJFF community shared common misconceptions about caring to help create a fuller picture.
Do you have any myths or misconceptions to add to the list?
1. That being at home means you have plenty of time to get everything done. Caregiving can be time-consuming, and even full-time caregivers sometimes struggle to fit everything in.
2. That caregivers and their loved ones never laugh. Despite the challenges of Parkinson’s disease and caregiving, jokes about the situation are not off-limits for many families. In fact, commenters report that humour helps ease tensions.
3. That caregivers don’t need support groups, too. If you can, find a support group for caregivers in your area. It gives caregivers a chance to air complaints, share triumphs and ask questions with others who can relate.
4. That caregivers don’t need breaks. Caring for a loved one can, of course, be rewarding. But after a day of monitoring medications and scheduling appointments, stress takes its toll. Family caregivers are at risk of declined health and depression symptoms. It’s hard to fit in, but practising self-care makes a difference.
5. That Parkinson’s caregiving is ever predictable. Parkinson’s disease manifests differently in everyone, and the symptoms can vary from day to day. The unpredictable nature of the disease can make caregiving more difficult.
Source: The Michael J. Fox Foundation for Parkinson’s research
In Australia, each of the State Parkinson’s Organisations provide support services for people living with Parkinson’s and their carers and they may be able to refer supporters to relevant support groups. To access this support call 1800 644 189. Alternatively, you can make contact via the Parkinson’s Australia website.