Caring for someone with atypical Parkinsonism can be an incredibly challenging journey, especially when it comes to handling the emotional fluctuations that the condition can bring. Atypical Parkinsonism, which includes disorders like Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA), and Corticobasal Degeneration (CBD), often affects more than just movement. One of the less talked about symptoms is the profound impact on emotional regulation.
Patients with these conditions might find it increasingly difficult to control their emotions. They might laugh or cry at inappropriate times, show sudden anger, or lose their social filter, leading to remarks or behaviors that can be out of character. This isn't because they've become uncaring or disrespectful; it's a manifestation of the disease itself affecting the parts of the brain that control emotional responses.
For caregivers, this can be particularly hard. It's not just the physical demands of caregiving but also navigating these emotional outbursts or unexpected behaviors. It's crucial to remember:
Let it slide: When your loved one says or does something uncharacteristic, try to understand it's the disease speaking, not them. This isn't about letting bad behavior go unchecked but recognizing that their control over these actions might be minimal.
Self-compassion is key: You are human, and it's normal to feel overwhelmed, frustrated, or hurt. Caring for someone with atypical Parkinsonism is an act of love, but it doesn't mean you should neglect your own emotional health. Be gentle with yourself. Allow yourself moments of rest, seek support from others, and remember, it's okay to feel what you're feeling.
Educate and prepare: Understanding more about the disease can help both you and your loved one. Knowing what to expect can reduce shock and hurt when emotional control issues arise. Support groups, therapists, and educational resources can be invaluable.
Communicate openly: If possible, discuss these changes with your loved one when they're in a calm state. Sometimes, awareness can help manage reactions better, even if control is limited.
Seek help when needed: Don't hesitate to seek help from professionals, whether it's for your loved one's behaviour management or for your own mental health support. Caregiving should not be a solitary endeavor.
Remember, you're doing an incredible job under very tough circumstances. Each day you manage is a testament to your strength and love. Keep taking it one day at a time, and be gentle on yourself. You are not alone in this, and it's okay to ask for and accept help when you need it.
2 comments
My husband was diagnosed with Parkinsonism then 6 weeks later was told it was PSP
The hardest part is trying to make my husband understand. Every time his Mom laughs out of the blue, he’s convinced she’s in pain, and he needs to find out why. Sometimes she laughs from frustration, and he will spend 10 minutes asking her what’s wrong. I’m sure that’s more frustrating because she can’t always communicate.