Just me and La

La (left) and me

'What do you really want?' My yoga asked me today and like all carers, I found that one especially hard. My life feels so tied up with La that sometimes it feels like it's all a succession of compromises around what La will like or tolerate. I really don't want to sound whiney or pathetically passive but what I want doesn't very often come into it.

 At the moment La's Dad is away on business so it's full-on, undiluted La and me, with occasional moments of light relief provided by La's youngest sister when she's around. La is at her day centre between 9am and 4pm so the hours between are a mish-mash of doing stuff La can't stand me doing while she's here (making telephone calls, shopping, working on my computer) clearing up after La and then fitting in time for myself.

 This morning La woke me up at 4.30, 5.10 and 6.03am and then I gave in, made her breakfast and kicked off the morning routine. Every action is duplicated whether it's loading a toothbrush or putting on a pair of socks. Once for La, once for me. There's a twist as La is less than cooperative through most of this: while I make her breakfast and packed lunch she grabs food on the worktops or what she can snatch while the fridge is unlocked, she's reluctant to move the limbs when I'm dressing her, clamps her mouth shut when I attempt to brush her teeth and lies down flat when I try to get her hair into some kind of order. You could call this stubborn defiance boringly predictable but it's also quite impressive and rather funny if you can keep your cool and not show your frustration as the clock ticks away.


 After 4pm, I'm led by La. I make the tea, maybe do some ironing, clear up, get her ready for bed.

 Right now, it's 7pm and we are already in our pjs, everything is cleared up and the evening stretches ahead of us.

 I think about the rest of our family - La's Dad is probably getting ready for a meal out with colleagues in Madrid, the three sisters are with their partners/friends and the night is young.

 There's a certain comfort to this easy companionship, sitting here with La nodding off on the opposite sofa, Channel 4 news in the background, there's even a homemade loaf baking in the oven and some new books on the shelf next to me... as well as a feeling of life just slipping through my fingers while I look after La...

La in the car

La was in Respite Care on Saturday and Sunday, Monday was a bank holiday - Dad off work, La's day centre closed but forget the vile weather forecast, a day out it had to be.
 At home, La nags pretty incessantly for 'Car, car' so car it was. La's Dad proposed that old standby, a trip to the seaside but with heavy showers, low temperatures and blustery winds on the cards, I came up with the idea of going to the town of Battle for a dose of 1066 and all that. La's Dad agreed it was a good idea. We had driven through a few times on our way back from Hastings and berated the fact that we had not allowed any time to stop.
  Battle met a few necessary criteria for a successful day out for La:

• A bit of a drive, not all on big roads
• Plenty fo eating options, not all fish 'n' chips
• Stuff to see, though not an overwhelming amount which would mean La zones out and we became frustrated

So three of us bundled into the car with various necessities of the day - which for us meant apples, La's music, baby wipes, spare pads and our blue disabled badge. La always travels with one or more of her cherished 'sniffy' pillows, a magazine and as many plastic bags as she can smuggle on her person into the back seat.

  Once en route, La invariable changed the whinge from 'car' to anything else she can think of, notably home, bed, bus, Anna, Becky, etc.

   In the end, she gave up, distracted by the hordes of motorbikes seemed to be heading towards a day out in Hastings - La just loves exactly the thing that annoys the hell out of us,  their noise.

  About 20 miles before we arrived, suddenly our nostrils were assaulted by a stench that was not going away. Travelling with an incontinent adult has its moments, however prepared you are. We were lucky and found a service station with a disabled loo... to find that after all that we did not need it as a discreet and casual check of an indignant La as she was persuaded to step out of the car, proved it was all just a very bad case of extreme wind. This discovery made La smile quite smugly at her relieved parents but as La's Dad said as we resumed our journey, 'it's only a matter of time.'

  I won't trouble you with the delights of Battle, I'm no expert; La permitted a mere cursory glimpse of its historic delights as she galumphed up and down the main street and into the various eateries. (William the Conqueror's magnificent Abbey is for another day, sadly.) La's main concern, as ever, was lunch and we did venture into a couple of delis, only to be put off by the throngs of tourists fighting for shelter from the cold and the few last tables and sandwiches.

  Our eventual experience of lunch at The Pilgrim's Rest has, I have noticed, been oh so accurately reviewed by previous visitors. Let's just say it was Fawlty-esque with enthusiastic but hilariously incompetent service. Which was a shame in a way because the food was fine, when it finally arrived and the building and front garden total stunners.

  Walking back up the main street, the inevitable happened, of course and La urgently announced 'Pooh!', by which time, of course, it was too late. La's Dad had noticed signs to a disabled toilet in our car park so we hurried her past all the other day trippers in the hope they did not notice the toxic smell.

  In brief, due to La's extreme cooperation and goodwill, we managed fine in the end but WHY ARE DISABLED TOILETS SO OFTEN LOCKED? It didn't even have an unhelpful sign to tell us we needed a special key from the town hall or wherever which is not bloody good if you are random, if desperate, day trippers.

  Rant over but a classic and pretty successful day out with La and plenty of car.

  

The sisterhood

La is all the wonderful things she is due to a large extent, in my view, to growing up in a big, bustly family such as ours.

  The second of four girls, one by one they have grown up beyond her and to a larger or lesser extent, become her carers. My Mum has a poignant memory of a tiny Becky spoon feeding a much bigger sister when she had to be well under 2 years old herself.

   Looking back, I can get quite teary worrying about the effect having such a needy, noisy and embarrassing sister must have had on them when they were really tiny. Anna, age 3 had waited quite a while for a sibling companion and what did she get? A whiny little sister who puzzled all of us and took so much of her parents' time and attention.

  La was two and a half when Becky turned up, a bruiser of a baby who nonetheless was defenceless when La developed the horrible habit of pulling at the baby's lustrous hair. She still bears a tiny scar near her eye from a time when La woke her up by clawing at her face.

  Melissa, five years later, had to cope with the same old crap. La still needed a buggy so I often had the baby in a sling as I manoeuvred a double buggy. It wasn't long before an ever-independent yet tiny toddler Becky gave up her seat to help me push the oversized La with her sister 5 years younger.

  As La's youngest sister. Melissa will be off to university in September, it will truly be the end of an era.

  La, her Dad and I, but most of all La, who can't work out when she will see them again, suffers most. Ironically, Anna and Becky probably miss La back rather than their parents. It's not as if they can have a cheeky Facebook exchange with La or a quick chat before they go out for the evening to keep the love alive. 

  When they call they want to know what La's up to and I have to relate the last funny thing she did or said. Only time will tell whether they are more positives than negatives growing up in a family such as ours. I just hope the girls look back and know, although it was tough, we really did our best.

Love letter to La

                         


You could say I have been known to moan and groan on this blog, whinge about life as a carer and the toll it all takes on family life.
  At it's centre, and indeed in its title, is the glorious La and today I want to cast all the negatives aside and write about La's magnificent persona and why we all adore her so much.
  Impossible to put into words, you really have to meet this spectacular individual to get the gist, but here goes.
  At the risk of sounding like an award ceremony nomination,here's what La is and how she affects the rest of us:

• The most original dancer I have ever seen
• The sloppiest kisser in the world
• The greatest appreciator of my cooking in the family - can't remember a refusal in 22 and a half years
• Fantastically musical - amazing retention of a tune and innovative compositions
• Hugely cheerful at all times - great person to have around in the bad times
• Overwhelmingly enthusiastic about life
• Uncomplicated in what she expects of other people
• An original sense of style with her own tremendous pzazz
• Adoring of her three sisters 
• Endlessly curious
• Takes pleasures in the very simple things
• Contented with her lot
• A quirky sense of humour which makes her the family clown, by her own choice

.......the be continued ........

Coping strategies

If I gave you a penny for every time someone said to a carer, 
'You need to look after yourself'...well, I'd be truly loaded, naturellement.
  In those moments when you are free of your caring duties, carers probably have work, other children/family members to attend to as well as housework, admin and all the crap we live with that has to be got through. Cast that aside and then, if you're lucky there's a tiny space. Some carers swap notes at carer groups, others even go out and work in special schools/day centres or volunteer as supporters.
  I have to say I have shunned all that like mad, desperate for that non-carer identity, keen to be somewhere, doing something where people do not necessarily know that I'm a carer and have no idea that an hour ago I was wiping a 22 year old's bottom and will be maybe an hour hence. It's not that I'm in denial. it's just that I need a break in every sense from the role.
  For 11 years I had a pretty stressful job, albeit working from home, running a Families mag. Now (praise the Lord), that is behind me and I have a new venture, Carer's Allowance and lots more time for my de-stressers like gardening, reading and catching up with my beloved friends. Best of all though, after a Carer's Assessment last year I was awarded a modest amount, per week to 'access the community'. 
  'Access the what?' Well basically what is being suggested is that carers need small bribes to 'Get out more'. It takes a while but a dollop of money is plonked into a special bank account specially designated for 'Getting out more'. You have to supply a reconciliation form every quarter with receipts, etc to prove that you've not been squandering it on gin and if it's unspent, you haver to pay it all back, in my case to Surrey County Council. What's not to like?
  I was pretty non-plussed/too stressed to begin to imagine the possibilities at first. The social worker tentatively suggested I try Yoga and, devoid of all other ideas, I latched onto that and thank goodness.
  To use up my allocation I needed to go twice a week which takes about 5 hours out of my week. I never thought I'd make it but now I'm not sure how I managed before.
  What does it give me? Everything anyone has ever told you about yoga/meditation/Tai Chi - empowerment, strength, calm, insight, peace, sleep - all of which has to be great for La too.
  So thanks Surrey CC - it would be stretching a point to say in these hard times I get Yoga on the state but it's almost true!

La loves Spain

Some holidays with La have been historically horrendous for reasons I may return to another time. Not this one. It may be a different country to the usual but she has everything need to complete contentment:

• Her immediate family's (almost) full attention
• A spacious space to retire to
• Satellite tv
• Car rides with 'mooosic'

What's more, she has made a new lunchtime discovery 'El menu del dia' - a cheap and cheerful three-course meal widely available here which most definitely suite her taste.

The locals get her too and she's given the bread first and enjoys all the rest - the spicy sauces, the garlic mayonnaise, the chips with everything and the delicately spiced rice pudding to top it all off!

On Good Friday she even coped with the crowds and enjoyed the religious procession of statues because they had bands and drums.

 No wonder she has a new word '(S)Pain!' which she repeats with great wonder.

Spending lots of time with La

At times, quite simply, La is a delight. A peaceful and relaxed family member who adds mostly humour to the proceedings.
  For the last few days she has replied:'Yes please!' to every suggestion. Ok during the holidays most suggestions are quite amenable.
  She managed to navigate the much dreaded passage through T5 with the utmost of ease. Every official-looking uniformed person La encountered was told, 'I want to go home'. The security guy checking our hand baggage and shoes for bombs could see the funny side. The BA woman on the check-in gate, not so much.
  La loved her breakfast in a Madrid bar. It was full of men reading the sports reports while they munched on churros. La lurched into their personal space hoping to make a grab at their reading matter but with a quick waft of the hand she got the message ok and moved onto the next candidate.
  Only two horrendous moments so far. The first in a supermarket in the middle of nowhere where the locals were so intrigued by the eccentric stranger in the shop they gathered in huddles to stare and blocked the aisles. I'll admit, panicked by the fact that I didn't know how to say 'excuse me' in Spanish I had a mini meltdown. So actually it could have been the mad mother who they are still talking about there.
  The second event was when she leaned on a display cabinet in our holiday home and brought some glass ornaments smashing to the floor.
  One day, how we will laugh....