This week’s episode of Ordinary Life was inspired by a conversation Kitty had with a friend who told her they’d been advised by their partner with Parkinson’s that they had no right to complain because it wasn’t happening to them.
Yet surely carers of Parkinson’s patients tread a tricky tightrope? Torn between sympathy and irritation, grieving the lost plans for their future happiness, are they not deserving of a friendly ear too?
Both people with Parkinson’s and the people that care for them are important. Both matter. After all, we are all human and we all have needs and wants.
Yet sometimes it feels like our needs and wants trade off against each other, and we are pitted against each other in a fight for the right to be seen and heard. As carers are often family members, this is mostly happening within families. People in many households are feeling isolated, alone and overwhelmed for different reasons, but connected to coping with Parkinson’s.
Carer burnout is real. Studies consistently show that family caregivers of people with Parkinson’s can often experience:
- Higher rates of depression and anxiety.
- Physical health deterioration from chronic stress.
- Social isolation as caregiving demands increase.
- Financial strain from reduced work hours or employment loss.
The same could be said for the people with Parkinson’s. And a person with Parkinson’s might say something like ‘you can’t complain, its not happening to you’ because they are dealing with a condition that is in itself silencing. This can be worsened if the people we are dependent on like carers, experts and others, start speaking for us.
We people with Parkinson’s get it – we know that having a medication option makes us “lucky”. We know that others are worse off, and that the people that care for us are usually our family members. They don’t get pills or any external support. They are often left holding the financial (and everything else) can. AND they are looking after us grumpy people whose disease takes away our voice, our bodies, and our good mood.
Lurking behind all this “its PWP or the carers” fight-night kind of feeling, is an elusive larger issue: that the prevailing societal expectation is that families largely absorb the costs, labour and impact of a disease that should be shared society-wide.
Because in Aotearoa/New Zealand, as in much of the world, people with Parkinson’s and caregivers alike are systematically unsupported. Caregivers feel unseen and un-cared for because our health system mostly caters to individual people and their specific medical needs. People with Parkinson’s also feel unsupported and bewildered because the health system says “You have an incurable neurodegenerative disease that will slowly disable you for the rest of your life. Here is some medication; good luck. The rest is on you.”
So what can we do?
At this point there isn’t the systemic societal change coming any time soon, which leaves the following work-around of caregivers and people with Parkinson’s alike finding safe spaces to vent, and get respite. Building our own networks of community and social support. Look after yourselves when you can, and try to set healthy boundaries. Not easy – we know, we’re doing it too.
If you are a caregiver feeling the weight of resentment, exhaustion, or the urge to shout, “Stuff the PWP, who cares?”, please know that your feelings are valid. But acting on them by directing that anger at the person you love can damage the very bond you are trying to protect.
Here are some ideas of things to try instead:
- Peer support groups (e.g. through Parkinson’s NZ): Nothing beats talking to someone who is living the exact same reality. In Parkinson’s caregiver support groups, you can express raw frustration without fear of judgment or hurting those you care for. Everyone there understands the unique mix of grief, love, and anger.
- Professional therapy (if you have the means): A therapist provides a confidential space to unpack deep-seated emotions, manage burnout, and develop strategies for setting boundaries without guilt.
- Trusted friends and family: Sometimes you just need to talk to a friend who listens without trying to “fix” it immediately. Be clear: “I just need to vent for five minutes.”
- Anonymous online communities (lots available on social media): For those who feel too embarrassed to speak face-to-face, anonymous forums can be a lifeline.
- Journaling: Pour every ounce of anger and exhaustion onto the page. It acts as a pressure valve, allowing you to release emotion without risking hurtful words to your loved one.
Your anger or sadness or frustration is a signal that you need support, not a sign that you are failing. By finding the right outlet, you protect your relationship with your loved one and preserve your own well-being.
At the end of the day we are on the same team. We all need support, we all deserve dignity, and we all suffer when the system fails.
What do you think?
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