Day in the life of a parent carer

Posted on the 16th June 2017

As Carers Week draws to a close Jill, mum to Noah and Oscar, shares a typical ‘day in the life’…

#‎notanurse_but this was my day last week, a straightforward day for me without any additional appointments for Noah. Just a run of the mill day in the life of a trachy vented mummy.

5:30am Oscar up. Cuddles and 10 mins with Oscar before bath for Noah. Sort all medical things in time for Noah’s cares. 2 staff in for new staff member tracheostomy change competencies. Do tracheostomy tube change with Noah whilst checking that Oscar is entertained and dashing between the two. See staff out and then dress Noah and take him downstairs. Do Noah’s meds and water through gastostromy. Daytime staff handover. Take delivery and sort out feed tubes. Get the boys dressed and sort their breakfast …. Near tantrum from Oscar – call daddy for backup. Eat Crumpet, Grandad arrived for Oscar. School bags, ventilator suction emergency bag, ambu bag, walking frame and extra water for gastostromy flushes piled into car…

9:00am – get to school. Reading with Noah in class (I didn’t stay long). Dash to pick up Hydroxychlorequin medication from local hospital pharmacy and then speak to agency for debrief of the mornings competencies.

9:30am Parent forum at school. Drive home radio on, calling at Pharmacy (local chemist) for Noah’s prescriptions. Chores: tidy up, dishwasher, bins out, wash on vacuum – coffee. Call from LTV team re tosca sleep study, discuss how changing Noah’s vent settings went and check that paperwork is amended. Clean sterilize and re set up new emergency trachy tube.

Is 11:30am too late for breakfast? Weetabix then microwave coffee from earlier; take breakfast to desk. 54 work emails… only managed to clear some emails in the time available – must do more later!! Make casserole for tea. Pre swim paracetamol just in case of tantrums. Stuck behind a learner car – running late. Pick up Oscar from grandma’s for swimming lesson. Mummy and Oscar time (praying for no tantrums at swimming). Swimming went ok and Oscar managed to be kept awake in the car afterwards. Pick up Noah and carer from school and call in at Supermarket for fruit. Arrive home.

Carer leaves and grandma arrives for her ‘shift’. Art box activities withthe boys, reply to invites for Oscar’s party, read books with Oscar and make kids pizza for tea. Oscar and I rake the grass in the back garden and pick blueberries off the tree. Swap kids with grandma. Go to Noah for supervision and encouragement to eat tea. Put some words together for a lecture at imperial college on chILD and new medical therapies, lung biopsy’s and drugs that did and didn’t work. Put Oscar in bed. Coffee and chocolate bun. Get Noah’s pyjamas on. Swap with daddy, just in from work, for his 2.5 hour shift in Noah’s room, checking ventilator and maintaining airway and giving meds and gastostromy water flushes. Dish out casserole, tidy and put another wash on.

8:50pm work starts again with meeting of me and Colin in Noah’s room to discuss the day and where our clients are up to – in between glancing at the sats monitor.

Staff training for me 9:30-10:30pm for a new member of the team for Noah. 10:30pm handover to night staff. Coffee and drinks for carers. Return to desk to work, clean up cat sick, back to desk. 3rd wash of the day put on…

12:30am finish work for the evening. Check in on Noah and carers and pray that Oscar doesn’t get up in the night. Maybe I’ll have time to read a bit of my book another day…

Jill shares her night as they manage without a night carer...

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