Monday, 13 May 2013

Mass Observation.

Linky here
The Mass Observation Archives have asked as many people as possible to log May 12th, in detail, for their records. Something which they started doing in 1937, for the Coronation.

I've sent ours in, but I thought perhaps people here might be interested in a whole day rather than just selected episodes from our life. It was a fairly average Sunday for us. So here it is, edited to remove comments on neighbours and bits of other people's stories.

I am 39, and a single adoptive parent to two girls (8 and 10), who have profound disabilities (cerebral palsy and Spina bifida) and complex medical needs (epilepsy, spasms, neuropathic bowel and bladder, central hypoventilation amongst others). M is unable to talk but can indicate yes and no with her tongue, A is very able to talk and has learning disabilities.

We live in a three bedroom ground floor ex-council flat in a nice town in Oxfordshire. We have two cats (a ragdoll and a Norwegian forest) and an assortment of tropical fish.

We live in the town where I grew up, and A attends my old primary school with a lot of support. M attends a local special school My parents live a 10 minute walk away, and we all attend the local church where I was Baptised as a baby, confirmed as a teenager, where my brother was married and where funeral services were held for my grandmother and my oldest daughter.

Woke up at 5.30am, not sure if my ears were ringing or if my daughter M's SATs monitor was alarming (same pitch). She was awake and smiling, so I gave her her morning meds (Tizanidine, Glycopyronium Bromide, Clobazam, Vigabatrin and Carbemazepine), adjusted her CPAP mask to stop an air leak, and went back to bed.

6.30am M woke me again, this time very very unhappy. Loud cries, lots of spasm, SATs dropping. Released her CPAP mask, vented her gastrostomy, rolled her over and changed her pad.

Still very uncomfortable, gave her a bisacodyl suppository and lifted her onto her special toilet seat. Gave her ibuprofen and paracetamol, still very uncomfortable.

Made her breakfast - baby cereal, fruit smoothie and milk, and pushed it through her gastrostomy tube, together with her Movicol. She went to sleep.

Fed cats (Royal Canin Fur and Skin) and fish (Tetra nibbles and Aquarians flakes).

7am, A woke up. Unhooked her from her ventilator, sat her up in bed, and gave her her morning meds (domperidone and oxybutinin). Rubbed her shoulders as she fought against her morning vomit. Helped her remove her overnight catheter from her Mitrofanoff.

Lifted her onto her toilet seat, pushed 490mls water through her caecostomy, Passed her her glasses, tray and iPad, and went to put the kettle on.

Made a large strong mug of coffee, swept up yesterday's mud and beads from the floor, did the washing up, and went to get dressed just as our morning carer arrived.

Put Radio 4 on (morning service), made a second cup of coffee but forgot to drink it. Quick breakfast - salmon and cream cheese sandwich as salmon goes off today. Yum. Found clothes for M - nice loose dress as no result from suppository and no morning wee either. Lifted her back into bed, got her dressed - very very sore still from recent round of antibiotics.

Put M in her wheelchair, found a scarf to bind her right arm to her body (she has recently had Botox injections into her shoulder to try and stop her arm from being stuck angled outward with her hand behind her head; the scarf encourages the botoxed muscles to stretch), put her glasses on, adjusted her hips to try and make her more comfortable.

M very distressed again and more spasm. Still no result from suppository and no wee, but gave her Buccal Buscopan which helped relieve the pain.

Listened to protracted negotiations between A (8) and our morning carer. Carer comes for 1hour15 minutes every morning except Saturday, and helps me to get both girls ready for the day.

Argument this morning about hair brushing, catheterisations, hoisting, bottom wiping, and giving breakfast. No tears and screams, just head slapping, shouts and frustrations. A good(ish) morning.

Carer brushed M's hair, sorted both girls' teeth, reported bleeding mouth*, recorded her visit in book and left. A signed the book for me - first and last name, all spelt right, very neat.

Blankets and cardigans as not very warm today. Then off to church - cats followed us halfway but stopped before the road, thankfully.

Five minute walk to church made longer as A in her powerchair decided to push M in her manual wheelchair.

Dropped A at Godzone (Sunday school), and then into church with M. A good day today, accesswise. Both doors open at the main entrance, so able to walk in straight away, just like everyone else, not wait on the ramp whilst greeters try to work out how to open the second door. I like it when they've thought about the fact we will be coming before we get there; it makes me feel as though we are a full part of the body of Christ, not an awkward addition.

Into church itself, and two men lined up to move seats to make space for M. Lovely. If she's going to choose to come to church rather than Godzone every week then we might need to think about giving her a permanent spot, but for now, this works well. Again, we feel welcome and included - unlike when I have to hover and somehow shift seats myself whilst blocking the aisle with M's chair.

Joined in our row by friends and then my mother too.

A good service. Lots of good songs - Never Let Go, How Great Thou Art, the Lord is Gracious and Compassionate, and a couple more I'd been singing on the way into church before knowing they'd be playing. Hurrah. M sang along to How Great Thou Art, but confined herself to listening and having seizures during the rest of the songs. Tim Davis (Vicar) preaching on Going on being filled with the Holy Spirit. Challenge - to do nothing without first waiting for God to come with us.

Communion made more interesting by the large new stage at the front of church; not much space for wheelchairs to squeeze past. But we managed, with help from friends and vicars and curates and staff, and it wasn't too much of a circus. And friends came up with a better plan for next time, so that's all good. Next challenge will be to make it possible for M to receive communion rather than just a blessing, as she seems to be indicating she might like to. Puréed bread and wine? Or just a small taster? Will have to ponder that, along with thinking about practicalities of Confirmation, if that's what she decides she wants. Am unconvinced of theological necessity, but as we attend an Anglican church, perhaps we should identify as Anglicans as well as Christians. Always Christians first.

Coffee after church with friends; A played outside with her friends, and M stayed with us.

Back home and a round of pad changes and catheters, a quick packet of crisps for A to keep the wolf from the door, a stretch for M, then both girls watched CBeebies on the iPad and I caught up on emails, Facebook, and a special needs forum.

A popped out to play with the cats, and we met our new neighbours-to-be - the flat opposite ours has been empty for three weeks, since the death of its former occupant. Now it looks as though a family who currently live upstairs around the corner will be moving 200 yards down the road and into a ground floor flat. Much more sensible as they have mobility difficulties. They tell me the council is going to transform their front garden into a parking space; very sensible and will definitely help with the parking problems in our cul-de-sac. Won't be for a couple of months though, so I shall believe it when I see it.

Back inside, another catheter for A and then finally Grandad (my father) poked his head around the door, having finished with the second service at church. Coats and blankets on, pudding collected, and we walk around to my parents' house for lunch.

A glass of sherry and some cheese straws, white wine with chicken casserole, carrots, broccoli and scalloped potatoes, and then salted caramel chocolate tart with crême fraîche and bananas. Very delicious.

M had roast beef, apple, carrot, banana, kiwi, caramel sauce, and bread puréed and pushed through her tube; a lick of the chicken casserole and half a teaspoon of the chocolate caramel pie. A good meal for her.

Coffee in the sitting room, and a silly game with clockwork Grannies on Zimmer Frames and Grandads with walking sticks. Snakes and ladders, and then triominos, and finally a pencil and paper for A. Grandad read papers and dozed; Grannie and I entertained the girls and digested dinner.

A diary check, a card written for the newest baby in the family (no name yet), and rough plans drawn up for a special table for A - she is having spinal surgery soon and will need a higher table afterwards.

Then wrapping up as waterproofily as possible, and a quick march home through the rain.

4.30pm and tea for A - sausage roll, cucumber and coleslaw. Girls watch more CBeebies - Postman Pat, Me Too, Chuggington.

I make M's blends - tea tonight and lunch tomorrow. Sausage rolls, marmite cauliflower, milk, orange juice, baked potato and prunes. Bit of a mixed meal but all food groups covered and should help her bowels along. Mixed up meds for next 24 hours, restocked drugs bag and school bag.

5.30pm. A into bath. Hair wash. Matt Redman "Sing Like Never Before" album on very loud. Gave Imi her tea, helped her cough.

6pm. Carer returns, lift M onto bench, hand over so carer can do shower and hair wash as I give A her evening meds (domperidone, oxybutinin, and lanzoprezole), and post her into bed. In dwelling catheter, next chapter of our bedtime book (Allen Ahlberg The Giant Baby), a God story (parable of the seeds), prayers, ventilator, snuggles, wheelchair on charge and goodnight. Phew!

Carer hoists M back into chair, dries and plaits mad hair, then hoists into bed, signing off at 7.15 having hooked up SATs monitor and CPAP, sorted music (Vinesong "Isn't He?") and sorted positioning pillows. We have help in the evenings three evenings a week; this is less useful than it was as both girls are now usually very tired by the time the carer comes (7pm on weekdays) and would rather be in bed already by that time.

Feed cats, separate fighting cats, do the washing up, avoid looking too hard at messy kitchen, debate doing another load of washing, but instead Febreeze the wheelchair covers (which have been washed so often since November that they are nearly falling apart already and have gone baggy) and stack the rest of the washing by the washing machine.

Grab some sewing I'm doing and continue to unpick last night's mistake. Mistake took two minutes to see in, and has so far taken two hours to unpick. Am only halfway there too. Debating point, but I will enjoy using finished item knowing I created it all by myself.

Girls all quiet; I gave M her evening medication (tizanidine, glycopyronium bromide, clobazam, Vigabatrin, sodium docusate, carbemazepine, epilim), kisses and prayers and a goodnight snuggle.

Did another two hours unpicking and now have just one inch left. Have had to stop as elbow and wrist cramping. Watched a BBC programme on hoarders and resolved to do something about piles of clutter in my bedroom. Probably won't, though. Debated grabbing more of the chocolate tart (Mum having kindly sent it home with us), but settled for a packet of crisps and a glass of wine instead. Not terribly healthy, but nicely portable, minimal effort required, and minimal mess made.

Now 9.20pm, I have done a final round - all breathing machines working correctly, all emergency medication within easy reach, cats asleep on armchairs, girls asleep in bed, washing still drying on the racks.

A quick diary check reveals a quiet week ahead; no hospital appointments, no school appointments, just meeting a friend for coffee and meeting more friends for lunch. Will wait to see what the week actually brings. It is rare for M to remain well all week; she usually needs a day off somewhere to rest from the demands of school.

Clothes more or less sorted for the morning (identified anyway), it is now 21.50, I am in bed, and about to do my last nighttime bits and pieces (Internet, bible study which didn't get done this morning, set alarms) before settling down for the night.

*M has a loose tooth which catches on her lip. Dentist will pull it (not falling out as anticonvulsants have caused gums to grow too much) but wants to wait six months. I understand her concerns over unnecessary interventions, but why should my daughter be left in pain for that long?

Reflections on the day.

Today was a pretty average Sunday. Whilst I might have a glass of wine in the evening on a different day, I don't ordinarily drink with lunch except on a Sunday.

Today M only used three incontinence pads. This is good as we are only allowed four per day, so I now have one in hand for days when she is unwell and gets through more than her ration. But it is also bad, because it means she held her urine too long, and then flooded through, making more washing for me to do.

Today M did need painkillers, but did not need oral diazepam for muscle spasms or rectal diazepam for seizures. Her seizure activity was pretty minimal; a few episodes of bigger seizure activity rather than the hour long runs she had on Saturday and Friday.

M did not require suction, a nebuliser or supplemental oxygen today.

A only threw one item and hit no one. She did scream, cry, hit herself and throw some impressive tantrums, but managed to keep a bit of self control. She did complain of back ache, but refused painkillers.

I lifted A (25kg) 11 times, hoisted her 1ce, and carer hoisted her twice.

I lifted M (30kg) 6 times, and our carer hoisted her twice.

Unfortunately, M's sling was wet, and she cannot sit on her spare sling all day. So I could have avoided three of her lifts, but the others were unavoidable. I could have hoisted A this morning, skipping one lift, and twice more this evening. Her other lifts were at my parents' house though, where hoisting is not a possibility.

My back aches!


“I donate my 12th May diary to the Mass Observation Archive. I consent to it being made publicly available as part of the Archive and assign my copyright in the diary to the Mass Observation Archive Trustees so that it can be reproduced in full or in part on websites, in publications and in broadcasts as approved by the Trustees

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