I understand that a large portion of readers will be parents, carers, or family members of somebody with NP-C. Therefore, I don’t need to state just how emotionally, physically, and mentally draining it can be to keep up with the demands of this rare disease for everyone involved.
It’s common for carers and parents to put the NP-C individual first. It doesn’t take much to understand why – a single day can be a juggling act of meds, various medical appointments, support worker shifts, and day-to-day essential tasks such as preparing vitamised meals.
It can almost be compared to a full-time job.
Unfortunately, it can sometimes lead to very little time for taking care of your own health.
The situation for carers
Research from South Australia has found that unpaid carers such as family members, were more likely to report struggling from psychological distress and described their health status as poor to fair (on a scale of poor to excellent).
They were also at higher risk of chronic conditions such as high blood pressure and cholesterol. These conditions can have serious consequences if they go untreated.
So, I wanted to write to you, the amazing carers of our NP-C community, and try to provide some awareness of how important your own health is.
You are important too
I understand that you want to be a good parent and caregiver. But please remember that the ability to provide support is limited by your own health.
You can only support someone if you have the capacity to.
The stress bucket model by Brabban and Turkington (2002) is a good way to visualise this idea.
To begin, imagine a bucket of water.
The water is the stressors of life (for example, your carer commitments or job) that flow into the bucket. Without a place to be let out, this water will fill and fill and eventually will spill out of the bucket.
This is the point of burnout, compassion fatigue, and severe stress. In other words, you have no more capacity to support or manage your life as you want to.
So, we need to find ways to let the water out. We need to make holes in the bucket.
One hole could be spending time with friends, and another could be meditation or prayer. Finding time to exercise or be outside can also help keep your bucket from overflowing.
This idea is also explained in a nice 1-minute video below.
What does this mean for you?
So, think about what is going into your bucket and what is helping you let the stress out.
Source: ‘What to do when your ‘stress bucket’ is full – tips for dealing with worry and stress for young carers” by Carer Support Wiltshire
The Mental Health UK website has a free worksheet to help you think and hopefully, take action to keep your stress level within your capacity.
If you feel like you need a bit of help with this, please keep in mind that Australia has a mental health treatment program that you can utilise. This program helps cover the costs of psychological support and can be a really great way to help manage your stress bucket.
It is never too late to change your situation. It doesn’t have to be major changes, but taking small steps day-to-day can make a big difference.
Stay supportive and supported,
Ellie
Brabban, A. & Turkington, D. (2002) The Search for Meaning: detecting congruence between life events, underlying schema and psychotic symptoms. In A.P. Morrison (Ed) A Casebook of Cognitive Therapy for Psychosis (Chap 5, p59-75). New York: Brunner-Routledge