Louise Ndibwirende (she/her) is a TEDx speaker, equality specialist, filmmaker and carer.
During Carers Week this year, Louise posted a video on Instagram about her experience caring for her brother and the things that helped her cope. We were touched to hear her talk about the validation she received from talking to other carers at our support groups, and wanted to hear more. So we reached out to Louise and she responded with this beautiful article, in celebration of October’s Black History Month.
I don’t think I will really ever get used to being a carer. I have adjusted to the pace, the routine, the recurring events – but not to the deep worry and flickering sinking heart sensation that seems to jump up by surprise in the moments that I least expect it.
The title made me feel quite uneasy for some time, as it did not feel like ‘a job’ but simply the right and kind thing to do. The alternative – doing nothing – felt unimaginable in my eyes.
One of the most challenging things that I have had to learn is accepting support for my own mental health even though I have had my own therapist for the last few years and being a carer has been at the centre of my sessions.
As a Black transracial adoptee, there is an added layer to my experience as a carer. Through my journey of caring for my brother, I have been subjected to the harmful “strong Black Woman” trope by my adoptive family with a heavy expectation of strength and never ending resource of resilience.
There are clear unconscious biases in medical responses and treatment based on the perceived level of pain Black communities can endure. This is damaging to not only the individual who is in need of care but also the loved ones who are providing the support. Earlier intervention could help many to have access to preventative care and reduce crisis care which comes at an acute cost for all involved.
In addition to preventative measures, it is important to ensure that there is diverse representation across the healthcare field to ensure that there is cultural competency in the decision-making and support offered for carers. This is essential to keeping Black people alive.
Though within Black communities there are unwritten rules of carer roles within the family – and though often individuals seem to carry it well – it doesn’t mean that the weight isn’t unbearable. Acknowledging the human limitation allows space for more compassion, support and systemic change.
During my experience as a carer, it often felt like stepping into a parental role, but without any training, guidance or knowledge of how to do the job well – or option to say no. The overwhelming feeling of guilt and weight of holding my brother’s life in my hands left me helpless and in a survival state for the whole duration of his care.
My friends were a vital space for support, helping me to understand the complexities of the mental health system and empowering me to not only advocate for my brother but also myself. I often struggled to talk about my experience, as I did not know if it was normal or if I should just quietly ride through the thunderstorm. The challenges of understanding the entry points of the NHS and community care added barriers to my access to the support I needed. Being able to ask the right questions, fill out the forms, and keep tabs of the various teams you are engaging with is alot for any one person.
I only started accessing carer support services later in my journey, and I wish I had done so sooner. There is power in knowing that you are not alone, that your emotions are valid, and that life won’t always feel so heavy. The saying “a problem shared is a problem halved” is very true. Sharing honestly and authentically about my experience freed me to let go of some of the weight of the responsibility and gave me a little bit of energy back to show up for myself each day.
Being a carer has reconfigured who I am on a cellular level – and affected all aspects of my life. Readjusting to this “new normal” whilst the remainder of my life continues to be the same is a difficult adjustment to settle into.
Something that has helped me with this adjustment is maintaining strict boundaries to protect my peace. This has meant saying no to certain things, choosing to preserve my energy and prioritising my mental health at all costs. This is to ensure self preservation. I would invite other carers to do the same – as showing up for yourself allows you to better show up for others.
“Acknowledging the human limitation allows space for more compassion, support and systemic change.”
People often find themselves in caring positions unexpectedly so it is not something you can prepare for. If I could share a message to my former self at the beginning of my journey I would say to have more grace with myself and my best is enough. I would give myself greater permission to experience joy amongst the chaos and not to abandon myself along the way.
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