Diary of a Carer

Written by a just 60 year old woman, living mainly in Finchley, North London and partly in Aston, a village near to Rotherham in South Yorkshire. Sandwiched between two generations with critical care needs.

I wrote most of this on 12/13 August but life events overtook me and it was unfinished. Then on 21 September someone from Greenacre reminded me it was due by Friday - I thought that was a pity, but too bad - a lost opportunity.

However on 22 September I found myself at North London Business Park, for the inaugural  meeting of the Barnet Family Carers Forum and my experiences there spurred me on to finish my entry. It was entirely written and edited on an iPod Touch as I can carry that about and write in odd moments in the car etc. I can also write on it in bed!

A  woman at my table at the Family Carers Forum meeting pointed out that 'the Council aren't supporting this and providing lunch because they want our involvement, it's just that (under rules imposed by the outgoing Labour Government) they have a legal obligation to do so'.

I went to the loo (having to be escorted by a council employee with a swipe card gave me a taste of the indignity felt by those with frail minds or bodies who always have to be escorted to the loo) and on my return found that I had been nominated as notetaker and spokesperson for our table.  I asked each person to briefly outline their particular care situation before we began. Several, like me, were Carers for two generations - I overheard a lady at the next table Caring for three generations!!
We are all very frightened that this penny pinching coalition government is about to make the almost possible, utterly impossible. They pay lip service to the importance of Carers but we are squeezed until the pips run dry!

One of the biggest frustrations of the Carers at the Forum meeting was that our annual mandatory Carers Assessments are meaningless, as no action is taken to improve our lives based on the lengthy forms we have to complete. The maximum Carers Allowance we can receive is a mere £250. It costs them more than £250 to administer it and it seems to be completely random as to who gets it, who doesn't get it and WHY. Some Social Workers demand receipts for every penny spent & some don't ask for receipts at all. Some Carers are told that it MUST be for things associated with the person they care for like petrol for trips out together, whilst others (like me) are told that it MUSTN'T be associated with the cared for but must be solely for the Carers respite needs. Some are only allowed to spend it on hard goods like a new washing machine or mattress. (I keep mine in a separate account and use it to pay for Creative Writing & Art groups and classes to keep myself sane!) If Government of whatever party REALLY values Carers, then surely our paltry £250 Allowance should be increased and given without ties, on a regular basis to all Carers below a certain income limit, like winter fuel payments or Christmas Bonuses!

The biggest fear at the meeting was that Direct Payments & services to those we care for are under threat from the Coalition Spending Review.

Several Carers were terrified by strong rumours & some actions indicating that the Coalition's plans for sneaky spending cuts seem to have reclassified 'Socialisation' as 'Leisure'. Vulnerable people of all ages with learning or mental health difficulties, or the elderly with dementia, desperately NEED SOCIAL CONTACT outside the home. Their Carers need a few hours a week, to be free of their caring responsibilities. It seems that transport and escorts to make 'socialisation' possible are being withdrawn on the basis that this is now classed as 'leisure' and is therefore no longer fundable. This is a very serious and worrying situation that will massively increase mental health costs for both the cared for and their Carers!!

My own biggest current fear is based on a report in The Times Newspaper that School Transport for Disabled over 16 year olds is under threat - I'm not in good health and have a 16 year old special needs daughter, taken by taxi to school & college each day. I also have a medically vulnerable Asperger's Syndrome 21 year old son who is part time at University, living at home. I simply can't meet my daughter's transport needs and I certainly can't pay for all (or as seems to be being proposed - half) of her taxis. If she looses her transport she will have to reduce her AS levels from 4 to 2 and thus loose all hope of University. It would be devastating to her and a waste of much of what the Council has spent on an SEN Statement which (despite medical problems and learning difficulties) has resulted in a wonderful 6A* and 2A at GCSE.

Anyway back to my account of Thursday August 12th.

I was woken at 3am by my ageing, infection scarred bladder,  I found my son still up and in a panic trying to get his stuff packed for a few days at my mum's. After coaxing him to bed I couldn't get back to sleep again for an hour or so. I woke again 7ish and did lots of E-mail on the iPod because dial up Internet at my mums is flakey.
One of the emails concerned I.T. equipment to facilitate A level study for my daughter - the Local Authority are struggling with the cuts and she might not get what she needs. But then the Councillors could postpone their own giant proposed wage rise and use it to reduce the impact of the cuts!
Another concerned car insurance - our aged family people carrier was written off by joyriding teenagers in a stolen car, demonstrating their frustration at the pathetic performance of England in a World Cup match. I've had to borrow to replace the car and have had difficulty getting reinsured as, even though I was in the kitchen washing up at the time, the world of insurance sees the accident as my fault! No claim not no blame!

I should be up and packing but it's now nearly 9 and I'm still in bed with the iPod.  I'm a Carer and I'm tired and this is a difficult summer, but I have to be a bit gentle with myself so I can cope with driving 160 miles today and sorting things out when we get there.

I'm one of the genaration caught in the sandwich between the needs of my mum & the needs of my kids - except that for me it's more than usuly difficult as I was 38 & 43 when I had my kids so my own health isn't what it was and because of health & disability issues the 21 year old may never be independant. I'm in North London with my kids. My mum is in South Yorkshire in a crumbling part C17 cottage. She is 82 with arthritis, one increasingly fragile kidney and is beginning to loose her marbles.

Being a Carer is never easy but the penny pinching of the new government is shattering plans and aspirations, wreaking havoc with the lives of the genuinely sick & disabled through their attempts to be seen as firm with benefits fraudsters. Ultimately the cost to society will be higher.

Our intention today was to get ourselves to my mothers - it's a bit like going camping or moving house as we have to take an electric cold box as an extension fridge, all our bedding, food I have cooked for my mum and any food we can't or don't want to have to buy there (eg Gluten free bread & other special diet foods)  as well as clothing, shoes, toiletries, a saxophone, a digital piano keyboard, two laptops, several cameras and a mini disk recorder to capture some of my mums rapidly fading memories. Plus shopping items I've bought opportunistically for my mum in London to take advantage of price reductions or to save me hunting for them in Sheffield. It's all much more difficult because the spacious people carrier was smashed up and I could only replace it with a car - we are very short of space. One nights fun for 4 teenagers, many years of difficulty for a family of 3 with disabilities.

Usually we have to take our beloved rabbit, but on this occasion my husband, who now lives in the West Midlands, is coming to look after the rabbit, a disabled hedgehog & lots of plants which need constant watering . He wanted a few days to catch up with his contacts in London. We grow a lot of bits to eat as organic supermarket salad and fruit are tired before they arrive. We'd love to keep chickens but are frightened of the foxes - we couldn't bring them into the kitchen overnight like we do with the rabbit.

Eventually we get the car loaded and are ready to leave - four hours later than planned! My son gets in and realises he hasn't got his Disabled Freedom Pass. Why does he need his Freedom Pass when going to my Mum's by car??? 'Because I need to know that if Gran gets too much for me, I can get on a bus and go home to Dad'. So my daughter and I sit in the car for 20 minutes whilst my husband rushes back and forth trying to help my son find it, or to persuade me to put my foot down and insist we go without it. We wait and my son returns very grumpy not having found it. We drive away. Before we reach the A1/M1 he has remembered that the Freedom Pass is in an outer pocket of his new bag and was in the car all the time!

We take the A1 as i'm tired and don't want to fight the lorries on the M1. I drive to Buckden in Northamptonshire - a village on the A1 with a late Medieval Bishop's Palace and two fine Coaching Inns. We head for the George and I order two hot chocolates and a decaf latte. We sink into a comfy sofa and I flick through a newspaper on the low table, whilst the kids take advantage of the free wifi on their iPods. This is the highlight of my day. A small oasis where for a few precious minutes I'm not responsible for anything or anybody. Bliss. Our drinks arrive on a tray with rough hewn sugar lumps and tiny chocolate biscuits. My daughter crunches her way through a couple of sugar lumps. My son looks suspiciously at the tray and asks 'how much did these cost?' 'I don't know - we pay when we leave, its a treat, just enjoy it'. 'Mum, we can't afford stuff like this, it'll be a fortune, just look at it. You should never order without asking the price.' The special feeling was broken by his anxiety.  'It won't be much, your sister and I have stopped here before'. We used the clean aesthetically pleasing toilets & I paid the bill, it cost about 2/3 of what it would have cost us for 3 drinks in Starbucks or Costa Coffee in an M1 services with no peace, no comfort, no free newspapers and industrial scale loos. My son was AMAZED and delighted and decided we should come this way again next time! I suggested that next time he should trust me!

Our next stop was a roadside petrol station with a closed down 'Little Chef', a car park full of broken glass and a somewhat unsavoury but much needed loo. We bought chocolate bars to get us through the rest of the journey.

It was early evening when we missed the new A1/A57 junction and had to track our way through Worksop. We rejoined the A57 through Anston and Todwick, over the M1 at junction 31, a wiggle round the fire station and we were at last in Aston where I grew up. Past the Yellow Lion, Aston Hall (the original Manor house, later a mental hospital, now a hotel), the parish Church (where i spent much of my teenage years developing social and political philosophies of life), High Trees (formerly the Rectory where the poet Mason lived and wrote and where Grey completed his Elegy in a Country Churchyard - the discarded verse was etched into the summerhouse!) round the corner, past the Blue Bell (up for sale!) slow down and put on the hazard flashers, turn left into my mum's drive and park beside our caravan.

For several years local builders, some known & some 'just passing'  have taken advantage of a vulnerable old lady 'I'll fix your roof love'. 'That is so kind, would you like a cup of tea?' So they chatted to her and did little or nothing. ' Job done love, that'll last you, just give me £100, I should really charge you more'. So off she trotted to the post office, some of them even gave her a lift there in their vans, and off they scarpered with crisp banknotes, the money she needed for food & heating.

In early July, I brought a friendly trusted builder from London with me to do some urgent repairs and assess the situation. He was HORRIFIED!  He condemned the C17 roof as unsafe and next day my sister moved my mum out of her enormous historic bedroom, the upper part of a Tudor farmhouse complete with beams,  which my sisters and I shared when we lived there, into the smaller guest bedroom in the newer part of the house. This was my parents former bedroom in which my youngest sister was born.

Since July I've spent countless hours trying to deal with the Local Authority, a housing  association, the Civil Service Benevolent Fund, English Heritage (who aren't insured to give ADVICE!!), my friendly builder and many many others trying to find out how to repair or replace a C17 roof which is recorded in local history books, without obliterating history and with no money at all.

At the same time I've been trying to deal long distance with assorted health & social care practitioners who are failing to see the extent of my mum's failing mind -  but it all takes so much time and I've two more to care for in London!!

I get Carers Benefit for my son who has medical needs as well as Asperger's Syndrome, but it sometimes feels as if I spend more time dealing long distance with my mothers care needs than his. That isn't actually true as he's had a recent spate of medical appointments and emergencies which have taken much of my time, but i do feel torn between the two of them especially as I can't leave him overnight without getting his Dad to come and stay. I'm not well and have an immanent tribunal fight to keep my Employment Support Allowance - they seem to think I should be going out to work!! How could I possibly do that as well as caring for three people? How do we live if they take away my benefits?  There is a strong argument that Carers should be PAID a living wage!!

We say hello to my mum, who doesn't seem very pleased at our late arrival. We are STARVING and reheat food cooked in London and brought in the giant Aldi electric freezer box, which ran off the car whilst we travelled and is now plugged into the kitchen socket - I don't know how we'd live without it - it (& it's predecessor) have made regular trips to Aston but have also accompanied our caravan to France and Spain (a trust funded the ferry fare) - in hot weather the cold box is much more efficient than the caravan fridge! I remember & would love to be able to return to the days gone by when my mum would have neatly chopped carrots & peeled potatoes & lamb chops ready to pop onto the heat the moment our car drew up. These days I cook in London to fill her freezer for one cooked meal a day until the next time ...

We take the tent out of the caravan and erect it on the lawn for my daughter - there is nowhere safe for us to sleep in the house and she values her privacy too much to share the caravan with her brother and me.
Having a tourer caravan, used for holidays in the UK (and when we were fitter and less poor in Europe), is what makes visiting my mum possible now we can no longer stay in the house.It resides in her driveway. We bought it because my Aspie son doesn't like staying in other peoples places and the caravan provides his home from home. I do recommend tourers to other parents of Aspies - my kids have seen all kinds of places they would never have seen without it!

We evict the camping chairs and assorted bins, buckets, bowls, beach toys, drying racks, peg bag and other paraphinalea which travel in the caravan loo so we can use it in the night. We make up the caravan beds with clean bedding brought from London. It's hard having to carry bedding and sleeping bags etc up and down the country but we can't leave them for my mum to wash as she is no longer capable. The last sleeping bag we left got melted in the tumble dryer.

We unpack valuables like the saxophone (the kids both play but with a smaller car have had to bring one sax and two mouthpieces). We leave our clothes and stuff in the car to be unloaded tomorrow. I'll be first up - both kids will need to lie in after a journey. I'd like a lie in too but have to be up early as someone from Staying Put Rotherham is coming to fix door locks etc for my mum - I arranged it for a time I could be here and that was why it was such a panic to get away from London today - I should have postponed it when my son was offered an urgent hospital appointment for yesterday - that's what took the time and was why we were so disorganised in getting away.

I fall into bed and drop asleep with the light on. My son complains next morning that it kept him awake and he had to get out of bed to turn it off. C'est la vie!

POST SCRIPT:
in the period between 12/8 and 24/9 Barnet Councillors have succumbed to pressure and postponed their wage rise, my daughter has got a laptop for A level study and we did get some small improvement on the car insurance situation. We now have clearer info on my sons medical issues and a plan to help him.
I have finally succeeded in getting my mum referred to a Memory Clinic and getting her some comfy shoes made to fit her peculiar painful feet and (with a bit of help from my husband) I hope I'm in process of sorting a stair lift and a lunch club. But the funding for my mums roof is not yet forthcoming, however I have an ecclesiastical architect coming to look and give me low cost friendly advice quite soon so maybe that will help to make a proper plan.