It's Carers Week and when I spoke to John Darvall on BBC radio Bristol yesterday he asked what I actually do, in real practical terms. I realised that so much of what I - and other carers - do is so automatic that you don't even realise you're doing it. It needs to be done, so you do it. To focus myself on what I actually do do, I'm noting down everything I do over the course of today. Plan is simple - only thing going on is a hospital appointment for Smiler at 12:20 - endocrinology.
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6:20 Smiler awake, so I go in and help him untangle himself from his bed covers, get on his feet and put on his dressing gown.
6:30 Boiling the kettle for a cuppa for each of us. Smiler wants to sit up to the table in the kitchen, so I help him sit in his chair, adjust the footplate and push him in.
6:45 Warming up Smiler's weetabix and help him eat breakfast, singing along to the radio to make him smile.
7:00 Draw up Smiler's two oral meds into syringes, wipe the spilt weetabix off the table, hand him the syringes one at a time to take the meds. Mix another medication into his drink, remind him he has to drink it before he gets down.
7:15 Back into Smiler's bedroom, wash his face and brush his teeth in his bathroom, help him use the toilet.
7:25 Help Smiler get out of his pyjamas and into his school uniform, put on his splints and shoes so he can walk around the house more independently, and show Smiler again how to open his blinds.
8:15 Wash and cut up a pepper for Smiler to have as a snack in school, check he has a spare change of clothes in his school bag.
8:25 Get the wheelchair from the back of the van, put it up and help Smiler sit in comfortably.
8:30 Time to walk to school, waving at a lollipop lady on the way, making a mental note to check Smiler's room for his library books as we pass the library.
9:00 Handover Smiler to the class team, reminding them that he has a hospital appointment and we'll pick him up at about 11:45. Explain that he will probably have bloods done but he hasn't asked me yet, so if he asks them they should tell him that they aren't sure, and he'll have to ask me when I get there.
9:35 Back at the house, strip Smiler's bed and put the washing machine on, then sit down for a cuppa and to check emails.
9:45 Ring GP to make an appointment for Smiler - as we're new to the surgery he has to be seen before they issue any of his repeats for his regular meds. No appointments available (for the next two weeks), advised to ring back tomorrow at 8AM. I explain it's routine, not urgent, but there are no appointments available to book for two weeks, which is as far ahead as they tell me they can book.
9:50 Spend 15 minutes on the phone to the council, going around in circles in their phone system. Need the email address of someone in local taxation department to give to Smiler's (council employed) OT so she can email them explaining that we/the house meets the criteria for a band reduction for council tax. Get nowhere. Tweet @BristolCouncil to ask them for an email address.
10:10 Paint Smiler's bathroom ceiling.
10:35 Ceiling finished - woo hoo! Time for another cup of tea and a bit of sock knitting.
11:20 Hang up the washing and put another load on.
11:20 Make a packed lunch for Smiler and gather some toys to use as distractions while we're waiting.
11:30 Into the van to collect Smiler from school.
11:40 Into school to pick up Smiler complete with wheelchair, drive into town.
12:05 Mr drops Smiler and I outside the children's hospital while he goes to find a parking space.
12:15 Smiler called to be weighed, so shoes off, splints off, out of the chair, then splints and shoes back on. Squeeze down a hospital corridor with rows of chairs on both sides trying not to run over anyone's toes.
12:20 Smiler called to have his height measured, so shoes off, splints off, out of the chair, then splints and shoes back on again.
12:25 Set Smiler up with headphones on to watch Aladdin dvd while we wait to be called to see the consultant. Mr arrives, having finally managed to park the car.
12:50 Get called for appointment - detangle Smiler from the headphones and dvd player, maneuver into the room and on with the appointment!
13:15 Appointment over (no bloods! Yay!) and I take Smiler to the BRI to get his newly prescribed meds from the pharmacy while Mr goes to get the car.
13:25 Trying to occupy a very stressed Smiler while waiting for meds to be dispensed - time for packed lunch! Help Smiler eat his lunch, then decide he needs to switch off so headphones back on and Aladdin plays.
13:45 Pharmacist comes out, explains she can't dispense meds as Smiler is under 18 and she needs to talk to Smiler's consultant first. Can't get hold of him, so will have to come back for meds tomorrow, or else pick them up from another Boots. Arrange to collect tomorrow from a Boots out of town.
13:55 No point taking Smiler back to school so Mr drives us home instead.
14:20 Take Smiler to the bathroom, wash his face and hands and then settle him on the sofa to watch the end of his film.
14:30 Make Smiler's bed now his sheets are dry, and put another load of washing in the machine.
14:40 Smiler's film is finished so we go into his room to find his library books. Having only just moved house they could be anywhere, but Smiler finds one in a box of books as we unpack them and line them up on his shelf and I find the other.
14:55 Leave Smiler to chill out in his room looking at books while I try to get through to local taxation on the phone again - waste of time.
15:25 Herd Smiler into the kitchen for a quiet cuppa before his brother and sister get home from school. He asks for his shoes off so I undo his shoes, unstrap his splints, and rub his feet for a minute - they need to stretch out after being held stiffly for so long.
15:50 Hang up washing and talk doors with the builder - need to fit a door to his bathroom with a handle he can use independently.
16:25 House is invaded by Smiler's sister and her friends - Smiler potters about while they sort out drinks and apples for a snack.
16:30 Smiler trips over in the hallway - takes both me and Mr to get him up and to the sofa. Read to him to help him relax before we check him over to make sure he hasn't broken anything.
16:45 All seems fine, so Smiler listens to his radio in his room while I sort tea out for everyone.
17:05 Smiler brother returns from school and it's time for tea. I sit and chat with everyone while Mr helps Smiler with his food.
17:40 With tea finished I take Smiler with me to walk the dog - get the wheelchair out of the van and push him over to the field where he walks a little then asks to get back in his chair.
18:15 Mr already find the washing up so we have a cup of tea and a chat while Smiler spends some time in his room.
18:55 Read Smiler one of his long term favourite books (Giraffes can't dance) then help him tidy his room.
19:15 Help Smiler draw his blinds before taking his clothes off to get in the shower.
19:35 Get Smiler's pyjamas on and his dressing gown, and into the kitchen for meds.
19:45 Draw up Smiler's epilepsy meds into a syringe, hand it to him to take. Mix another medication into a drink, replace two slow release patches behind his ears, and check he can still use both arms/hands normally after falling earlier.
19:55 Smiler uses the bathroom, laughing as the wash/dry toilet does its thing - much preferable to me having to wipe and wash him!
20:00 I tag Mr in to do Smiler's teeth while I hand Petal's friend back to her mum.
20:05 Chatting interrupted by Mr calling me into Smiler's bathroom. His jaw has dislocated and I'm the only one trained to manually put it back in. First attempt fails, second succeeds.
20:10 Smiler comes into the living room so we can keep an eye on his jaw - he wants to go to bed but we persuade him by offering an episode of the Lion Guard (kind of a sequel series to Lion King).
20:20 After his jaw has fallen out twice while he was laughing Mr and I realise this will be a long evening with Smiler. I make some sandwiches as there's no point trying to have a 'proper' dinner in case we end up in A+E. Smiler's sister goes to bed, his brother stays downstairs watching the programme!
20:55 Another dislocation which I have to put back in - the amount of pressure you have to use is scary. Smiler vomits so Mr takes him to change his clothes and brush his teeth while I clean up in the living room. Noah decides to go to bed - I remind him we might have to take Smiler in to the hodpital and not to worry if he hears us bustling about.
21:10 Smiler is back in the living room in fresh pyjamas, I put on another episode of Lion Guard and cross my fingers.
21:35 No further dislocations, so I take Smiler to the toilet and we tuck him into bed.
21:40 Cup of tea! Fold the washing, and load the machine with Smiler's pyjamas and rinse.
22:00 Sneak a peek into Smiler's room - he's in bed snoozing with his mouth closed.
22:05 Put a load of washing on including the pyjamas and set the timer so it'll be finishing when I get up.
22:15 Watch TV for a bit with Mr - there are emails I should be writing but I'm knackered.
22:40 Smiler's still sleeping - mark the time on our white Smiler board, set my alarm for in an hour and Mr's for an hour after that, and go to bed.
23:40 Up and check the board - he was sleeping when Mr checked him an hour ago. I peek in, and Smiler's mouth still closed - I set the alarm for in two hours, Mark it on the board and go back to bed.
1:40 Up and check the board (fine), check Smiler (fine), write on the board that I'm done, and back to sleep.
😴 😴 😴
Carried over for tomorrow:
● check Smiler can use both arms after falling today
● ring GP surgery at 8AM to get a routine appointment for Smiler so they can issue his scripts
● tell school about the fall, the jaw dislocations and the late night
● chase up the medication that the pharmacist couldn't give us with the local Boots, if no joy then the BRI pharmacy and the consultant
● keep trying to put the council OT and the council local taxation in touch with each other
● check out door handles in B&Q to see what would work for Smiler
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