Desert island decisions

It's been a bit of a funny weekend. No karaoke on Friday evening as my friend couldn't make it due to illness and I wasn't feeling too brilliant either so decided to give it a miss. The visit to our foster daughter we had originally planned for Saturday was usurped by her "real" family (who claimed they spend more on her when they take her out so they should get precedence, besides they didn't want to shift to Sunday as they like their Sunday roast) and the boot fair we had planned on Sunday to try and raise money for a forthcoming break away from home in a few weeks time was rained off. Having spent all Saturday exhaustingly sorting through my stash of craft materials to find stuff to sell, this was exceedingly annoying, especially as there will be few such opportunities before we go away, given my husband's shift patterns.

On the good side of things a) we got our van back, although it cost £130 more than we had budgeted for in repairs and b) a very dear friend is on leave next week and decided to use one of her precious days off to visit me, so there is that to look forward to on Wednesday. And I am now re-learning how to list on eBay, after a gap of some years when my husband has done any listing that needed doing, so the craft stash can be sold off there, more gradually, although not, hopefully, so gradually that we can't get the van taxed before we need to go away, as that would kind of put the kibosh on things..

I am now very much looking forward to the aforementioned break. Thankfully whilst we hang on desperately to the camper van through selling the contents of our home to fund keeping it on the road, it gives us the means to stay somewhere almost as cheaply as being at home, and the target this time is attending a ukulele festival weekend, then moving on afterwards to spend some time with my father and his partner at their home in the Lake District. I had reached the grand old age of 48 without attending a music festival (aside from as a craft stall holder at our local Broadstairs Folk Week years ago now) and it was on my list of stuff to do before I die. Ok it's not Glastonbury... but it's equally exciting to me, especially as it is ukuleles! Yay!

Last but not least in this summary of our last few days, my husband and I had a conversation about the "quinking sicksand of life" situation I wrote about in my last blog entry. When we get back from our break, we have decided that the way forward may be to start discussion with social services about how they might help support our son if he was in his own privately rented flat out in the community (ideally I would like it to be sharing with another person with different learning difficulties, for safety). It might be possible to get this lined up at much shorter notice than a placement, which might make it possible to coordinate selling our home with arranging somewhere for him to move into directly afterwards. As for us, if needs be we could live out of our current camper van and whatever we might be able to get in the way of an elderly dilapidated two-person tiny caravan until the money side of things and a more permanent live-in vehicle solution was sorted.... and of course that would remain local for however many months or years it took until we were well satisfied that arrangements for our son were sufficient, permanent and working, and did not need our ongoing additional support to enable them.

Which has brought me to thinking about what one really NEEDS in life, as opposed to all the stuff we THINK we need. We are going to have to make do with a very small amount of room to live in, in the future... so everything we bring with us into that life has got to be either essential or one of a small group of very limited things there because they are wanted rather than needed. It's amazing what people accumulate in life, and we are prime examples of this... piles of books, cds, dvds, electronic equipment, stuff related to hobbies, stuff related to old past hobbies we have well moved on from but "might just take up again one day", photos, items of sentimental value and souvenirs, ornaments and knick-knacks, clothing for all occasions and weathers and accessories thereto, tools, equipment, furnishings, smaller modes of transport. Reducing this to what will fit into a camper van and small towing caravan will be an interesting exercise in clarity about what is really needed in life, aside from one another, the dog, a few clothes, bedding, pots pans and plates etc and a couple of ukuleles. It's a bit like the old question of what's the tiny shortlist of luxury items you would choose if suddenly faced with being stranded on a desert island  (the uke of course being a perfectly suited answer!)

The quinking sicksand of life...

I seem to have been absent from this blog for quite a time. It's not that I have been particularly busy and it's not that I've been particularly depressed - in fact mood wise most of the time I have been relatively fine for a mentalpausal woman. There have been some highs... some good nights out at karaoke... a rare evening at a concert by the super-talented Ukulele Orchestra of Great Britain which was  real buzz... but I have been feeling that on the whole life is a bit, well ... stuck... and there are things I am getting both angry and frustrated about (which is better than depressed, I suppose!).

We are in a serious Catch 22. Without going into all the gory financial details we need my adult son with complex learning difficulties to move out into a safe suitable supportive placement so my husband and I can sell our 25% leasehold share of our shared ownership scheme home and resolve some serious problems and move on in our lives via what will be quite a drastic change in lifestyle, but the problem is that if he does move out we cannot actually afford to live here whilst it sells and would likely find ourselves defaulting on the rent on the other 75%,  and thus invalidating our leasehold and losing the very asset we need to liquidate in order to be able to move on in life (we wouldn't quite qualify for housing benefits). Not to mention not being able to meet the basic bills without his contributions, nor to run the vehicle we need to get my husband to work (he works odd shifts not conducive to public transport) and to keep me from being virtually housebound (I am  crippled by M.E., and not always well enough for the somewhat bumpy, limited and extremely slow mode of transport that is the battery scooter).

Which brings me nicely to the major moan that is this blog today... I know that as a country we are just as debt-crippled as my husband and I are as individuals... but the climate towards the sick, the disabled and their carers just seems to be getting more and more hateful, suspicious and blaming... it feels like a witch hunt now.  I know public money needs to be saved but why are we targeting the most disadvantaged in order to do it? As I happen to be both sick and disabled AND a carer I feel doubly cursed. According to present public opinion anyone claiming sickness or disability benefit is a work-shy, cheating benefit scrounger and carers ought to be able to combine their caring with gainful employment.. as if caring wasn't enough of a job in itself. If you are claiming any public money you are certainly viewed as not being entitled to have any kind of living standard above abysmal sub-survival or you are obviously being given too much.

Well I for one am fed up! I can barely walk 70 yards without pain and often struggle to get dressed yet have been repeatedly turned down for D.L.A. for years, since I fought to get myself out of a wheelchair. I look after my son all day every day except for the couple of days a week he spends a few hours at a day centre and am "on call" every night,  and get just £50 odd of public money a week as a carer (less than an unemployed person)as my "replacement income", which it seems the world now begrudges me. Due to my caring responsibilities I hadn't worked enough to accrue any entitlement to contribution-related benefits when I got long term ill (probably at least partially as a direct result of being a carer, the stresses thereof, and the stresses of constantly fighting a system that didn't want to shell out for decent support or education for my son when he needed it, growing up).

We have been living for years on one wage in an area of the country where families with two wages coming in struggle, and our wage now is particularly low, yet still we hardly get any benefit help at all. Yes I go out once a week and I stand up and sing intermittently, but on the financial front I eke my way through a couple of drinks all evening, and on the standing to sing front I can only manage it via resting the rest of the week and some serious painkillers. It's my bit of life and my break from the caring... yet here I am, feeling I have to justify it!

Our van is constantly breaking down because we cannot afford to maintain it properly and still pay our creditors the agreed amounts (would we be in debt if unpaid carers were paid the national minimum wage per hour they were on duty or on call like their employed carer associates?... I don't think so!). We are happy to sell the contents of our home bit by bit to pay the maintenance and repair bills and keep it on the road, since our hoped for final solution to the issues involves not having a home to keep the contents in....but we kind of need the van working in the first place to get the stuff to the boot fair we want to sell it at to afford the repairs... yet another Catch 22.

So here I am knocking 50 in a couple of years, having spent all my adult life caring for someone else - despite  disabling illness myself since age 30, willing to bite the bullet and lose our home in order to settle financial problems and debts and move forward in life, but stymied even in that. I think it takes a particularly positive attitude to embrace a solution of losing your home, your accrued possessions, and living in a live-in-vehicle and view it as a potentially exciting and challenging phase to come in your life. But just as in every other phase in life, the "system" is not coming up with the goods... a way to help us move forward out of the Catch 22 and achieve this... support, advice, solutions. Present the "system" with any situation that doesn't fit into standard tick boxes and it flounders, scratches its head and disappears in a cloud of dust and excuses. It has never even been able to deal with a family - or a person - presenting with more than one problem or issue at once. Social services - and, when we had our mentally ill foster daughter also living with us, mental health services too -  have always spent more time arguing about what department is responsible for and paying for what (and then collectively not paying for anything, most of the time) than about seeing our problems holistically. That's when we've even HAD a social worker, from any department!  When we've had a good social worker (at present we have no-one specific assigned) they have always been struggling with a system that doesn't allow for what they would like to do for us.

At present our son is lucky enough to get a couple of days at a centre a week and some travel training for a couple of hours but we live in constant fear of losing these services, having spent years in the past without such things and particularly in the light of the current climate. As I get older and in my ever more failing state of health I am starting to feel that the challenge of caring isn't something I can carry on with until old age... even with respite breaks (which I currently don't get anyhow).. and that as my son nears 30, and I 50, he and I are both entitled to lives and futures of our own now, and he is entitled to carers with energy to spare and new ideas to help him progress, as well as me as just Mum, there in his life but not there in his face or his space. We love each other dearly but we get ratty with one another - this week has been particularly problematic in that respect - we are two people with challenging difficulties trying to cope despite the problems that arise from their interaction. Thankfully I have a very caring husband to help, but he has to go out to work...

I am willing to be gung-ho in life... fortune favours the brave, seize the day, boldness has genius, power and magic in it... and all that jazz.. but what does one do when  all set to boldly go, but trapped in a quicksand from which one cannot find, nor perceive, any means of release or helping hand? I am not fiddling whilst Rome burns, I am playing ukulele whilst trying to ignore that steady sinking feeling....