The day of a carer …

When I talk to others about the complexities and challenges of caring, it can all to easily feel like I’m being unfaithful. But often it isn’t the actual doing things for my son that’s exhausting – it’s the hoops and hurdles, the policies and funding panels. In short, it’s the lack of coordinated service provision that is the greater, often hidden, burden of care.

It’s Thursday 9^th June and this is a summary of the things I have done as the parent carer of my 16-year old son who has complex disabilities:

Emails sent at 6.30am (whilst still in bed)

Pre-anaesthetic questionnaire on the Great Ormond Street app
Physio, OT and SLT updating on upcoming surgery at Great Ormond Street next week.
School nurse and nursing assistant regarding instigating change in pad size and activating a delivery.
Inclusive technology about broken iPad arm (essential for upcoming hospital admission).
Paediatric community nurse informing about upcoming surgery.
Wheelchair OT requesting appointment (as current wheelchair will not be appropriate post surgery).

Morning telephone calls received (only ones relating to my son recorded)

Introduction of new SEN caseworker – seemed like a great bloke.
Inclusive technology rep being utterly wonderful and sorting the iPad arm to be picked up tomorrow and fixed ASAP.

Morning emails received

Local authority adaptations officer emailed about upcoming works and processing the finance papers.
Follow-up email from new SEN caseworker with contact details.
Email from the SEN team notifying me of updates being made to EHCP and request access to hub.

Afternoon letters

Payslips arrived so made all the wages payments to carers via my banking app.
Unfathomable letter from HMRC about yearly award letter under state aid rules.
Informed about PIP acceptance (had a proper giggle that my son only gets 6/10 for eating and drinking – think he must be having time off his NBM and blended diet needs without me knowing).

Afternoon phone calls

School nursing assistant following up and instigating order for new pads.
Third party company requesting a meeting to put together a plan for personal health budget (I have requested I do this myself and liaise after first draft as I won’t have time to meet before operation date).
Independent trainer asking for clarification regarding quotation for carer training for the team who works with Sam at home.

Afternoon emails

2 messages received via the Great Ormond Street app about upcoming surgery.
2 emails received from class teacher about needs for tomorrow and review of today.
1 email from school app about connecting to new format to see reports and updates.

There were evening emails which trigger tomorrow’s to-do list to be formed.

None of the above is my paid work. I did a day at work too.

This is parent carer work

I am the mother to two other children and although I have had an email from one of their schools, there simply isn’t a comparison of workload. My son with disabilities has been looked after by other people throughout the day. He has been at school and part of the time of me writing this he was in a hot tub just beyond my window living his best life with his favourite person (Lucy).

Technically, I haven’t been caring for him. But I am always caring. Even when my son isn’t at arm’s length, I am thinking, planning, communicating and co-ordinating. I’m being scrutinised, quizzed and asked for information across education, health and social care.

It is widely accepted that a person who is disabled doesn’t necessarily ‘look’ disabled. A person who is a carer, doesn’t always look like they are caring.

This #carersweek there are the hidden carer roles

There aren’t simply hidden carers, there are many hidden roles and an unseen toll of being a carer. I might not be hoisting, attending a therapy appointment or pushing a wheelchair, but this #carersweek I know my caring role has included countless hidden ways myself and other carers are caring, co-ordinating and communicating.

When someone calls me for a quick two minute conversation, just one form, or a little thing that I mustn’t forget – it is never one thing, it is always one more thing.