Carers: A different kind of independence

Hi

So today is carer’s rights day so I wanted to speak a bit about my mum, stigma and independence or more precisely a different kind of independence. 

My mum is my carer which has complicated implications for our relationship - sometimes it is a source of strength and brings us closer in mutual struggle against a system that necessitates her extra labour and other times it is a source of frustration or sadness or pressure. 

As my care needs have fluctuated over the years, the balance of this relationship has too and we have had to be stronger than most mother-daughter relationships to withstand the pressures that have come with the situations we have faced in recent years ranging from medical emergencies to my protracted process of growing up. 

These personally difficult situations have been put under extra strain by external circumstances and pressures from social ideals, finances, services and the pandemic.

It is hard for me to accept but I need more help in navigating everyday life than most people due to my ASD, eating disorder and ocd. My mum’s duties start from 5am to help me prepare food or decide what clothes to wear and don’t end until we both go to bed.

At points over the last few years these hours have been more intense including the period where I was refusing to sleep more than two hours a day or when I was in hospital and she had to be with me 24/7 apart because the hospital staff couldn’t handle me and asked her to stay. At that point I was both so physically weak and mentally overwhelmed by being away from all my routines and quiet times, mum had to even help me get dressed. I was called a baby by medical staff and treated as such despite the fact that I was still managing to study for my degree in the background. They would either bypass me entirely and speak directly to my mum or try to deliberately cut her out to ‘protect’ me, both of which mischaracterised the situation  my mum was not taking over but reducing the barriers I was facing and translating my voice so it could actually be heard and cutting either of us out from that mutual process would be the disempowering thing.

Mum doesn’t get a day off. 

I need my mum’s help for a lot of things from the big things like managing interactions with medical institutions, helping me understand banking and managing external official communications. She plays a central role in  advocating for my rights. She attends to my medical needs in making sure I take medication and eat, that I don’t overheat or get too cold and all the ed backlash that goes alongside this. 

She helps in translating me to the world and the world to me, managing my and the rest of the household's emotions, helping me clean my food and plan out my days, helping me decide what to music to listen to, which food to eat, what colouring pencils to use and try to plan to move forwards. 

At first she was juggling these commitments around full time work and all our household needs but since the pandemic and my breakdown she has been my full time carer which has put extra strain and tension in our relationship. 

Our relationship takes many forms my mum is my translator, my advocate, my manager, my emotional support, my guide, my therapist. People often criticise us both for being dependent but my mum’s support is needed to tackle the extra barriers I face due to my conditions and an unadapted and inaccessible world. 

There are many times that people have seen our relationship as toxic as if she is preventing my independence. It is true that I can do very little by myself but that is not because of my mum and the little that I can do is because of her support and belief in me and - yes - her tough love. If my mum pandered to my conditions I would not even be at the stage I am now.

My mum is also my challenger, my conscience and my accountability. Our relationship has also contained endless arguments, regretted words and hurt feelings. But she is there for me and we have to close ranks because of all the times the responsibility has been left to us.

We have sought help many times but have had the door closed in our faces or our trust taken advantage of. Our closeness is protective and no one understands our situation like us.

From my mum’s perspective, the pressures on her can be immense, from trying to balance the practicalities of financial needs, the needs of other members of my family and navigate a million different social expectations. From being criticised as failing to raise an independent child, for being overbearing or irresponsible, pushy or colluding with my illnesses, enforcing dependency and babying me. 

These narrow sighted judgements even from those closer to the situation and who should very much know better and be offering support add to the mental torment and self-doubt. 

She is expected to know all the answers - sometimes by society and sometimes by me. She is expected to fill a care gap willingly out of family duty and do so uncomplaining. She is expected to always be on top form and to have the answers. She is supposed to be able to withstand the emotional pressures of being yelled at or being told her daughter might die and to constantly put her needs second to mine. 

She is not perfect but neither am I. I may not always need her like I have done recently, and at the minute as I am making progress and my constant need for support is ebbing, we are once again going through a painful renegotiation of the terms of our relationship.

I have to recognise her own journey and my own limits and I have to understand my mum’s worries also. 

I will probably always need my mum for some things and so my independence by conventional standards will probably always seem incomplete but characterising this as a failure is insulting to both my mum and I and to all the work and trials we have come through together. After all with my mum having had to play so many roles for me in the past years, one of the most painful losses for us has been our lack of time and space for her to just be my mum.

I have a different kind of independence, one that has been hard won and enabled by the endless sacrifices of my mum for which I will be forever grateful.

Thanks.