Just over a year ago my little family were identified as being ‘in crisis’. The crisis was that with the end of my PhD, so came the end of my bursary and regular income. It was necessary for me to work full time to keep a roof over our heads. By working two part time jobs – effectively a full time job and a bit – it became obvious that Wonder Boy had needs which were no longer being met. Finding your lovely young person sitting alone in the dark when you get in from work because he didn’t understand he needed to turn the light on, finding out he hadn’t had a drink since he got in from school or a snack because no one told him to get one, seeing his sad face that you were not home when he got in was frankly heart breaking. Like lots of other carers, you put on a brave face tell yourself it’s what needs to happen in everyone’s best interests, but it’s bloody hard just the same.
I phoned ASCAT and said this is not ok for us. We were given a ‘crisis’ package of care with a view to supporting Wonder Boy to make decisions about his future. This crisis package paid for a care worker to support WB through activities of daily living and meant that I could go to work knowing that he was cared for, safe and ok.
This package was always going to be temporary and certainly should not still be in place 14 months later. The idea was that WB would start college in September and an alternative plan would be put in place to cover the other two days. We have been pushed from pillar to post during the past 12 months with the majority of care still being provided by me with occasional calling in of favours and bribing other friends and family. It became obvious that full time employed work was untenable so I decided to freelance. Anyone who has started their own business knows this can be challenging. The worry of not having enough work, the long hours, the constant follow up, jobs promised but not commissioned, short term contracts, lack of borrowing capacity, stability, holiday/sick pay does not make this an easy choice but it does mean I am around at home more. As at least one morning a week is taken up managing and co-ordinating WB’s care and meaningful activities and another morning a week is spent chasing up all the professionals who have failed to return my calls from the previous week, freelancing seemed my best if not the easiest option. I doubted an employer would provide the flexibility I would need – yes I can work full time but some of that time will be in the evenings and at weekends and I definitely can’t do Thursday’s before 10am or Wednesday’s at all….
WB has now been transferred to the Mental Health team – he needs the Autism team, but hey ho. He had to be reassessed in case it was found that he was no longer autistic or learning disabled since April and his needs and vulnerabilities were clearly written up. Today we have been working up a new care plan. Basically this means stripping his crisis package back to its bare bones and offering Telecare.
One of WB’s primary needs is the need to hydrate and eat regularly. WB does not recognise thirst or hunger or hot or cold so being appropriately dressed is also a challenge. Hydration is paramount to his wellbeing. Failure to take onboard sufficient fluids results in aggression, oppositional behaviour, confrontation and general pain in the arseness. If continued over the day this behaviour becomes increasingly violent and threatening. In WB’s crisis plan a lovely care worker prompts WB to drink, he observes and notes the amount of fluid being taken. He will put strategies in place should WB fail to drink enough and generally gets him through the day. In his new plan an alarm on WB’s phone or if we are very lucky a phone call from someone will remind WB to have a drink. No one will check that he actually has had a drink and no one will know if he lied about it.
A further need is road safety. WB does not access risk well in the community. Recently seeing a pound coin in the road and with no thought of traffic bending down in the road to get it. Wondering out in the road because the pavement is busy without looking for traffic. Still not using crossings safely despite the hit and run. In the crisis plan a care worker prompts WB to navigate the roads safely, to cycle (not anywhere near the canal!) regarding proper road sense, to talk through again and again the appropriate steps to stay safe near roads which we all take for granted. Under the new plan, WB will have to pay for a tracking device so if we lose him we will know where to look.
In the crisis plan WB is with someone all the time. The ‘someone’ understands his needs and supports him through the day so I can stop worrying about him and focus on my work. With the new plan he will be with someone four days a week and left alone for a whole day because four days a week meets his needs. The risk of being left alone has been pointed out by me and our care provider. He will be provided with an alarm should he get into difficulty.
WB is pissed off about all of this, he has a routine and carers he has bonded with. He has stated that he has no wish to engage with the new plan. He is deemed to have sufficient capacity to make this decision – I am arguing this point – so it is possible we will be left with no care plan. This is what austerity actually looks and feels like.
I am not sure what my next move will be but it will probably cost the local authority more than the £120 a week it costs now. If I state that I can no longer look after WB and effectively make him homeless this would cost the LA, what £1500 a week minimum? Or perhaps I will throw in the towel and accept that a career is not for me and decide I am WB’s full time carer, I can then get carer’s allowance, housing benefit, I won’t pay council tax, and a whole host of benefits I am not aware of yet. I’m thinking that’s going to cost a bit more than the £120 a week in care costs too. Prevention is always going to be cheaper than crisis and it is short sighted to think otherwise.
I heard my social worker tell me today that she has another client currently in hospital with a brain injury. He is ready to come home, but needs an appropriate care package to do so. She put one together based on his needs and it was signed off by her manager. Panel rejected the plan, simply asking for more information. It took the social worker 5 days to find out what further information she needed to provide. Five days where that chap is sitting in a hospital bed for no medical reason waiting to go home. The average overnight stay in hospital costs £400 per day, according to Data.gov.uk. So this chap has cost the NHS £2k because a social worker is trying to source information about a care package.
When WB was under the care of Children with Disabilities services we received a personal budget to meet social care needs. It was a tiny budget to pay for clubs and I was audited every three months. Adult social care budgets are usually larger but in my area they do not have enough finance staff to maintain the audits so money gets put into accounts and is never audited. This begs two questions – How do you know if it’s being spent? I have unspent funds in my account. I also have funds which the Children with Disabilities service should have back. I’ve tried to give it back on several occasions but they don’t return my calls. But the second, and perhaps more pressing question is, is it being spent in the best interests of the person it is provided for. If you are not auditing it, how do you know? I doubt we are the only family in this situation so when I hear my social worker talk of cuts in services, whilst this is no doubt a reality, I would argue that my LA don’t know where the money is either.
Our care needs are nothing next to some, I appreciate I am lucky. I have a lovely partner who is doing his very best to take on the challenges of the gorgeous WB, I have a Mum who is doing her best to find WB jobs to do to make things easier for me, I have very tolerant friends. But there is a limited for everyone and we are almost there. I fear a further crisis package may yet be needed….
I should be doing housework. The place is a tip, piles of paperwork leaning precariously like some homage to Pisa. Various prospectuses, job applications, CV’s, local authority letters, forms and reports, events which were must go see now already passed, hospital appointments and referrals, DWP letters with constant amended tax credit information, bank statements, audit trails and of course bills, always there are the bills. Some of it is mine, some Wonder Boy’s, some relating to my Dad. Most of it is in the dining room so despite my former rule of always eating at the table at mealtimes we’ve been eating off our laps for a fortnight. Yes, I am familiar with avoidance….
Having finally managed to muster the energy to shower – I’m becoming increasingly aware of my lack of va va voom not being helped by a 14 day cold which will not bugger off – I found myself performing the starring role in a fictional multi-disciplinary team (MDT) meeting about Wonder Boy’s future. I tore my ex-husband off a strip for not supporting me despite being a qualified social worker who is now a carer support worker helping parents just like me. I regretted all the times I ever said to someone ‘oh yes, we co-parent’ because it gives him credit where it isn’t due. I challenged the head of adult social care team – because they are easy to get to a meeting if it’s fictional – and demanded that he acknowledge that WB cannot be left home alone and to work out a realistic daily budget so that I could start negotiating with organisations who previously would have worked with you, but now don’t until they know you have some sort of sanctioned budget. I told the social worker who is supporting Wonder Boy – you know the one I asked to be part of the autism team, but in reality is part of the adult social care team, new to the area with no specific autism knowledge, no idea of the services available, how funding works or what the deadlines are, she’s nice but not what I need – to talk to WB on his own because I felt that I was hampering progress about decisions he should be making about his own future. WB knows I will make decisions, he knows I will act in his best interests, he knows I am usually right, he knows that I love him to the moon and back and as much as he thinks I’m a pain in the arse, he trusts my judgement. So when we go to look at a college or a service provision and he is asked what he thinks, he looks at me and says “Do I like it?” I need to be removed from this scenario so he can explore his own thoughts, painful as that is to do.
In my fictional MDT meeting I questioned the social worker about talking to WB for an hour on a walk then coming back to tell me that he wanted to do what I did – what train for 9 years to do something you are really passionate about only to find there are no jobs for you? I was hoping for more for him – no he wants to work from home like you do. He wants to work in IT as a web designer. I put it to her that WB has never really shown any interest in IT, he watches endless YouTube clips on his phone but that’s as close to IT as he gets as far as I’m aware, that I presumed web design required some sort of qualification which was beyond entry level 2, so, I put it to you m’Lord, that perhaps the social worker sowed the seed of an IT career because she has a perception that all people on the spectrum love IT, you know, because it’s geeky.
I also express my disappointment about WB’s teacher who has been my wing (wo)man in many a battle but has now gone strangely quiet in her support of future options for my gorgeous boy. Connexions weren’t present in my fictional meeting because I can’t even get them to return my calls in the far reaches of my imagination. Having felt empowered by my handling of this imaginary meeting I promptly burst into tears and stood sobbing from frustration, fear and uselessness.
Everything has a knock on effect and navigating your way through causes mind numbing weariness. I need to get a full time job because if I don’t I will lose my house. Subject to court order which stated I had two years to get a mortgage in my own right, that deadline is looming. Despite managing to pay my mortgage at times with NO income over the past four years my mortgage provider changes the goalposts every time I think I’m in a position to move on.
From the moment I stepped into this house I felt connected to it. It is the only home my daughters have known. I am not overly sentimental or spiritual but I believe this house looks out for us, it keeps us safe. WB lived in another house until he was three but what a move would do to his wellbeing is not something I care to dwell on. Despite living in other flats and houses, when I said ‘home’ I always meant my parents house where I grew up, but when I moved into this house that changed – this was *my home*. Therefore, keeping this house is vital. Whilst selling it would release my ex-husband from the mortgage, he does not hold an equity stake in the property and whilst that would leave me with a tidy sum it wouldn’t be enough to buy a house big enough for us to live in locally and I can’t get a mortgage so….. I’m stuck in a stupid loop. But if I can get a full time job I can get a mortgage – provided I have a contract with more than six months to run and earn a significant amount of money and pass all the other fucking stupid tests that the banks put up as a barrier to me paying for something that I am already clearly paying for. So I don’t just need a job, I need a good job.
In order to get a job I need to know that WB is well cared for. I headed out to London yesterday for an interview, half way through the journey I knew I couldn’t commute every day and not just because it would cost over £670 per month for the privilege to travel. I would be too far from home and would be unable to get back quickly enough when needed. Being able to get WB from school because he is having a bad day, being able to visit service providers, attend meetings, make calls to professionals, drop off forgotten kit, lunch, money, bus pass, being home when he is sick, being able to call him at school so he can talk through something vitally important like whether we can buy a new petrol mower, I need to be able to do these things on a fairly regular basis. What employer can understand and accommodate that? I can’t even quantify this. It’s not like every Wednesday I need to…. It’s haphazard and unpredictable but without this support WB would struggle to get through his days. Every day starts optimistically and adapts to whatever happens. When I drop dead of a heart attack you’ll know why. It’s a pretty stressful existence.
I have friends who are well intentioned and lovely but just so naïve to the constraints and barriers put up by the systems families like mine have to work within. Yes, in theory I can choose an out of county college for WB but in reality how will I get him there? There are NO TRANSPORT options other than ordinary community services which he cannot navigate independently. So I would have to take him – see earlier comment about needing a full time job. Hi I’m Jane I’ve come for the role of whatever you need. I’m hard working, conscientious, articulate, I’ll be a real asset to your organisation, just one thing I need to start at 10am and finish at 2.30pm to pick my son up but I’ll need full time wages. Yeah, that makes me instantly more employable, not.
Or there are the ‘we can get him a job’ brigade who offer the earth when you first talk to them only to concede on further questioning that they couldn’t possibly get WB a job he actually wants, that we all have to start at the bottom, that really the options are collecting trolleys in a supermarket or packing stuff in boxes in a warehouse, not for actual wages you understand but these guys are paid handsomely in experience. Yeah, because that pays the bills and puts food on the table doesn’t it. WB needs a job because he has ambitions to live independently and because if he is doing a job it’s morally right that he gets paid. These guys are not slave labour to be exploited under the guise of short term apprenticeship.
The professionals I speak to are all so full of ‘let’s get him a place here and then everything will be ok’. But I have been playing this game for long enough to know that we are a long way from everything being ok. This is just the start. Leaving school, going to college, getting a job – which he can hold down, learning how to travel independently, learning how to manage money, learning how to cook, living independently, finding a place in society, creating a supportive social network, that’s many years of work yet. So I don’t trust the professional optimism. I listen to others like WB, they paint a more honest account of college placements which have broken down, placements that were almost impossible to get out from, long periods of waiting whilst something else was found, funded, offered, jobs from which guys were laid off, parents who gave up work or doing things they liked so they could ferry kids from one placement to the next, guys spending long days gaming in their bedrooms without seeing another soul, sense of hopelessness, depression and boredom. These guys are 19, 20 ffs.
I am a naturally optimistic person. I constantly ponder innovative ways in which I can make the world better, easier for WB and his friends. I surf the internet looking for funding streams or new projects in the extra hours I have thanks to my insomnia which might offer some opportunities to WB. I smile politely when I feel patronised by the well intentioned because I am *just* Mum (“ yeah that’s Dr. Mum to you ok mofo?” I channel Pulp Fiction characters occasionally, that bit happens in my head, so its ok.) But even I’m feeling increasingly hopeless and helpless. The complexities of our lives, Dad in hospital, needing a mortgage, needing a job, needing support over the summer, needing more time to hug GCSE girl, needing to be well, taking time to notice just how beautiful and wickedly funny the baby of the bunch has become, building a relationship with the bf and his family, needing time to see my best friends, needing certainty, the mundane, stability, is all taking its toll.
I’ll feel better tomorrow. I’ll get some sleep and remind myself I’m doing a bloody good job despite the difficulties and I’ll start the day afresh. This is probably just a blip caused by a stupid cold and not getting a job I didn’t want, but it is also a reflection on what it feels like to not have the support you feel you need. Maybe I should request an MDT meeting for real….
Wonder Boy had to have Thursday off school. They were going to see Star Wars at the cinema, an opportunity which two thirds of the country would probably jump at, but not Wonder Boy. Cinemas have lights in the carpet. Cinemas and Wonder Boy don’t mix well.
Neither do lights generally. Or crowds. Or trees indoors. Or people popping in unexpectedly. Or surprises. Secret Santa was a particular challenge this year. If you are the parent of a vulnerable young person you tell them that no adult would ever ask them to keep a secret. Just sticking Santa on the end doesn’t make it ok. Even after almost 20 years with Wonder Boy I’m still learning.
In addition, we lost our lovely social worker this month too. Hard to find a social worker who you like, is good at what they do and who WB also likes. We are very sorry to see her go. It transpires that you lose your children’s social worker the December before you leave school. I had – laughably – thought there would be seemless transition from children’s to adult social care. I mean we’ve been ‘in transition’ for the past five years so it should all run smoothly right? Wrong. It transpires that we will not be picked up by the autism team within adult social care because WB was ten IQ points away from a learning disability and because we are not ‘in crisis’.
I’m not sure quite what we need to be to be ‘in crisis’ but I reckon it must be more expensive to deal with than ‘ticking along nicely with decent support and a nice plan for the future’. I have no idea what WB’s future looks like. I’ve been told that there are no five day packages any more. A five day package would typically involve three days at college and two getting work experience with a local charity – not paid work obviously – with only 15% of adults on the spectrum being in full time employment this is fast becoming an impossible dream. So college it is. If only we could find a course with modules in sharks, tractors, history (war years only), juggling and anger management which sets assignments only on the days WB feels like it and allows time out when the whim takes him.
Even if such a course could be found, it still leaves the other two days a week to fill. We might be lucky and get one day but that leaves one day a week with no support. This doesn’t just affect WB. Every decision I make has to factor this in. I have spent 9 years qualifying to do something I love. I have £20k of student debt which needs to be paid back ideally from full time employment. Only I don’t feel I can work full time, not yet. Sometimes friends and colleagues send me exciting fellowship info, research posts or dream job opportunities. First thing I do is look where it’s based. I could not contemplate moving. Upping sticks away from everything that we know – the social care system we, kind of, understand, the friends who support in a million different ways, the ex-husband who offers vital respite every other weekend, elderly parents who step in at the last minute…. It makes me smile and then makes me cry at the naivety of these emails as they ping into my box with unattainable offers. I really appreciate what people are trying to do, but just cannot comprehend how they think I will manage it. I do not think less of them for not understanding. Being a carer is a complex situation which seeps into every aspect of your life.
My response is to work part time on lots of things at the same time, juggling time to accommodate WB’s needs. I take time off one job to work on another so that I can manage things. Everything is temporary contract so the rug could be pulled at the drop of a hat. Maybe then we would be ‘in crisis’. During the daylight hours, I tell myself I thrive on the stress and that a conventional job with security, someone else who keeps an eye on my tax, or even – oooh the luxury – a pension would be dull and I wouldn’t like it. I’m a nomad, doing fabulous and interesting work wherever I go. Unconventional and loving it. But at 3am knowing that work is drying up a bit after Feb I’d sell my soul for a 9 to 5 or better still a 9.30 to 3.30 with any days off that WB is left unattended.
I’m a loyal soul. The thought of letting someone down is too much for me, so until I know that WB has a college place, has a safe place to be for the rest of the week and is reasonably happy I don’t feel it’s fair to any future prospective employer. If I keep moving I’m ok, but if I stop I sleep – a lot. I’m more than a little aware that a couple of glasses of wine a week have become a necessary part of my day if I want to sleep all through the night. The weight gain I blamed on the PhD is still there -and some – long after I’ve finished and is probably more to do with the biscuits consumed to offer some comfort for the myriad of daily complications. I work in healthcare, I know the signs of comfort eating and self-medicating. I know that I need to take better care of myself. I am bloody tired.
Add to this the season of panic buying for loved ones, estranged family, new family, coming up with ideas of what loved ones can buy other loved ones, secret Santa’s, endless lists…. No wonder my bloody pressure is on the up. But we are not ‘in crisis’, not yet. I’ll just keep swimming and everything will be ok, but I can’t see the shore so there is a limit…. So tis time to take care of myself so I can armour up and run into the next bout of complexity this life seems to chuck at me. I really, really need to curl up on the sofa and let the world look after itself for a bit, so if I don’t make it to your Christmas party please don’t think too badly of me. I feel hugely blessed to be invited to so many places, to have so many lovely people in my life but sometimes a girl has just got to lie under a duvet in pj’s and watch telly for the sake of her own sanity. If you know anyone else who cares for a young person on the spectrum, know that what you think is fun is probably an emotional minefield, know that when you say you understand, you really don’t and that’s fine, know that we are doing our best but this time of year is just hard for us, know that we see the stuff you don’t see, know that we know our children and will do what’s best for them regardless of what the rest of the world says we should do.
Big Christmassy love xxx
Wonder Boy wants to take up gymnastics. He’s also spending a bit of time doing his hair, worrying about spots and how to get rid of them and generally caring what he looks like. I love the ordinariness of these behaviours. Wonder Boy is not ordinary as a rule.
Now he is 19 and I’m busy, I advised him to contact the gym where he wanted to go and find out about it all, where, what day, what time. He amazed me when he called me in a fluster of excitement to tell me he had phoned MK Gymnastics and asked if they ran a disabled class as he has Autism. I cannot tell you how fabulous that is. One of his greatest vulnerabilities is his inability to accept his diagnosis. As we inch further and further towards adult services, this vulnerability has become more and more plain to see. Services which are currently stretched to the max are more than happy to walk away from a service user who insists they can manage independently – although as wonderful as Wonder Boy is – he can’t.
So I’m made up that he phoned and disclosed this information – it’s an enormous breakthrough. He was told that MK Gymnastics do run a disabled class but it’s only for children and WB is too old. However, he would be more than welcome at an adult session, they run throughout the week, just turn up. In a wonderfully autistic way, this was devastating news to WB as the time the classes ran was 8.30-10.00. He gave me this news despondently, “why the unhappy face?” I ask. “I’m at school 8.30-10 so I can’t go” “Oh, you think the classes are in the morning, no, they are in the evening.” “Are you sure? I’ll ring them again!” I love hearing WB on the phone to people; he turns into Hugh Grant for some reason. I hear “Hello I’m terribly sorry, but it’s me again, can I confirm that when you said 8.30-10.00 is it at all possible that you meant in the evening? ….. You do! That’s wonderful, I can come!”
We head over in good time as WB has been ready since 5pm. We arrive and park up. It’s a big building easy to find, but there is no signage that we could see, as to where the entrance was. We found it down a broad unlit corridor between the buildings. If it was a horror film you would be screaming “don’t go down there” at the screen. Not exactly welcoming. We found a door which was open and a reception to the left.
I did the talking. This had already been discussed in the car. WB has trouble getting words out when he is nervous. I explain to the person on reception we are here to join a class, first time here and all that. We were given a form (actually two, she thought I was there to do gymnastics too, I’m a middle aged chubby woman, my leotard wearing days are well and truly over). I offered to fill in the form, while WB paid. Receptionist asked me how old WB was, because sometimes he becomes invisible. “19” I say. We fill out the paperwork and pay. There is a bit of a kerfuffle because they had quoted WB a price 10pence less than we had to pay, but we navigated our way through that. I then asked for a receipt and explained that WB gets a budget from the LA to pay for things like this as it meets his social care need. I thought that this little exchange – the fact that he’s 19, but he’s come with his Mum who is asking if it’s ok if she stays, his Mum has to fill in the form and he is behaving a little oddly about a 10p price increase – would indicate that WB is a bit different.
We are told where the men’s changing rooms are and which door to go through, assured that we will see people warming up soon. So we go in. Someone who we think is a coach is chatting to someone else, so we loiter by the door as classes finish and people leave. Adults start coming in, we loiter a bit more. Then decide to sit on a bench while coach is still talking. I keep looking over, you know, like you do when you want to attract someone’s attention. Coach walks off to other side of the room and remains there.
We watch as more people file in, take off shoes and start using equipment and doing exercises we have no idea how to do. After 15 minutes, WB turns to me and says “I feel really uncomfortable”. You see, having autism doesn’t preclude you from realising when you are being ignored. I go to reception and explain that we wanted a disabled class but were told we should come here, we were assured that we would be made welcome but so far we have just been ignored. To her credit, she apologised and said she would talk to someone. She explained that one coach would work with WB on the trampolines and another (presumably the one who was steadfastly ignoring us) would show him some other stuff.
Trampolines made WB dizzy so he was shown some stretches and asked to do push-ups. The receptionist then took over and showed WB the rings and how to roll into a pit of foam blocks. At this point I saw the coach who had been ignoring us laughing and apparently chatting to WB. For a while there I thought maybe I was being a bit harsh in my judgement, but on the way home WB explained that the coach was laughing at him because he was struggling to get out of the pit. Laughing at him for trying. Nice.
In the end WB was encouraged to try a cartwheel – he has CP and low muscle tone, a situation I would have been more than happy to explain if disability had been mentioned ANYWHERE on the form – so this was quite hard for him to do. At points, he just stood and shrugged at me because he was so unsure of what to do.
In the end, I think he asked about parkour which seems to run in an adjacent room. He explained to me that he thought that parkour might be more his thing, as the whole gymnastics thing wasn’t as friendly as he thought it would be. “No, problem” I say. Obviously, I don’t mean this, WB has had more than enough scrapes throughout his life and taking up a potentially dangerous sport is not on my ‘to do’ list, but it’s not my life it’s his and I will support whatever he wants to do (but I won’t watch him backflip off a wall….)
WB scoots off to find the Parkour bloke who comes out to meet me (lovely!) and have a chat. He seems much more friendly, explains that they teach Parkour on a Tuesday and how much it is. If you pay in advance you get it cheaper so I explain we have to pay weekly because it’s just easier with our LA payments, the ones WB gets to pay for clubs that meet his health and social care need. I was then advised that a children’s class might be better, the implication being that disabled people should be treated like children I concluded. “No, I think an adult class would be more appropriate” then I departed with “See you next Tuesday”, which made me smile all the way home. You have to take the small wins where you can.
I know my gorgeous WB isn’t physically as able as the people we met yesterday but watching him pulling himself up onto the bars, knowing where he has come from and just how brave it is for an anxious young man to walk into a room of physically fit young men I could not be more proud of him.
I don’t know much about gymnastics but it seems to me it’s about focusing on your body and making it do extraordinary things. Wonder Boy does that every.single.day.
It also seems to be about pushing the limits of what should be possible. Wonder Boy does that every.single.day.
If I was MK Gymnastics I would be wanting to find many, many different Wonder Boys. Please, please, please, if a Wonder Boy happens to come along to a class or two at your organisation make them feel welcome.
A few days ago, my crowdfunding bid came to an end (http://www.crowdfunder.co.uk/relationship-project/). I had set up a project to gather love stories from people affected by dementia to form an online repository, a living archive. The idea was that participants would be recruited and interviewed, these interviews would be recorded and these recordings would be uploaded to a webpage managed by the Institute of Health and Wellbeing at the University of Northampton. The aim is to give participants the opportunity to tell their love stories while they are still able, to evidence the importance of intimate relationships even in old age and in the face of dementia and to make this knowledge and information public for all to share.
When you set up a crowdfunding project you have to estimate how much money the project will need and offer rewards in exchange for pledges. There is a time limit and you have to raise the full amount in pledges or the project gets nothing. I estimated I would need £1500 to make this project a reality, host a launch event and produce postcards and a book to promote the project. I managed to secure £525 in pledges – which is truly fabulous and amazing – however, did not reach target. So I started to think about a Plan B.
To my absolute surprise and amazement, some of the people who pledged asked if they could make a contribution anyway regardless of the fact that the crowdfunding bid came up short. I then caught sight of an American article which has picked up on my Relationship Project and run a story. (For the full article here is the link: http://www.mcknights.com/daily-editors-notes/campaign-to-archive-dementia-love-stories-stumbles/article/418285/)
I am so moved by the level of support and would love to continue with this project. So, if you would still like to contribute, please make a donation via PayPal (my email address is email@example.com). I will keep a full set of accounts so you can see where the money has been spent and I’ll keep blogging progress as I go.
My deep and sincere thanks to all those who are supporting this project.
The local Co-Op are looking for evening/weekend staff so I pick up an application form. I know it’s a world away from being an acrobatic pilot, which is Wonder Boy’s first choice job, but we’ve all got to start somewhere. I help with the application, it takes over three hours. I realise that application forms are not best suited to describing all the quirky skills which Wonder Boy has. I hope that the scant details are enough to get his foot in the door.
The majority of the application is a series of scenarios for which you must indicate the best and least best option. WB did alright on these really, mostly picking the most polite option as the best option. He is assuming he will get the job, so I’m planning to deal with the disappointment if he doesn’t. But I’m also keeping everything crossed that he at least gets an interview. In our house this is an epic event.
Wonder Boy decided he wanted to hand the application in personally by himself. He dressed accordingly. I asked him what he thinks he would enjoy about working in the Co-Op and chatting to all the customers was his reply. I pointed out he needed to work too, it wasn’t all about the chatting. I was told I should appreciate the customer experience a bit more. I really hope he gets the job. He has informed me that should he get an interview he will need a suit which he will also wear should he get the job. I said I thought they had uniform. I’ll wear it over my suit I was told. We’ll deal with that if he gets the job….
So he left the house alone, brimming with confidence and ready for the world of work, leaving me at home brimming with equal amounts of pride and terror. It’s a small town where we live and I know that WB likes to wander around the charity shops so I wasn’t too worried when he didn’t come straight back. Actually, that’s a lie. I worry as soon as he walks out the door, the worry reduces only slightly when he comes home. I’m good at worrying. I suppressed the urge to call him until he had been out for two hours. “I’m buying strimmer twine and goggles” I’m cheerily told. “Ok” I say – it’s not ok, we have loads of pairs of goggles and I want him home “Enjoy shopping” I lie “Have you got a key, I need to drop the girls off at the town centre” “Just leave the side gate open”. This is the equivalent of ‘don’t wait up’ but I go along with it.
A further two and a half hours later, I phone him again “I’m in the pub, but it’s ok, I’m not drinking! I’ve just got myself a diet coke” I know the pub he is in, it’s got a full bookshelf and a good stock of newspapers. It’s the sort of place I would go alone if I fancied a glass of wine and a chat with friendly locals. But suddenly, because my beautiful Wonder Boy is in there alone, its a den of iniquity, something akin to Hogarth’s gin house. “Who are you with?” I’m asking him “No one I’m on my own but its ok because I’m not drinking, I’ve just got a coke” And it IS ok because he is doing all the independent things we hoped he would do from the moment we got a diagnosis. We have actively encouraged, coached and supported him in order to achieve the very things he has been out doing today.
When I was a teenager I used to say my Mum was like June Whitfield. Whatever I seemed to say to her she would respond with some kind of comment which I almost always heard as “that’s nice, dear”. I used to challenge her on this all the time. “I’m pregnant with triplets” “That’s nice, dear”, “I’ve joined the foreign legion you’ll never see me again” “That’s nice, dear”, “I’m earning money through prostitution” “That’s nice, dear”. My teenage self was seriously annoyed by the relentless June Whitfield loveliness. However, my adult mother self sees this as absolutely the right response when what you really feel is overwhelming worry that you haven’t prepared your children sufficiently for the outside world. Almost certainly you have and so has their school and peers and extended family. But emotionally you are scared shitless when your children find their independent feet. You know it’s unreasonable. Given the choice in all honesty I would keep my children at home wrapped in cotton wool for all time. That’s not OK with them, so next time WB tells me he’s in the pub but he’s ok, I’m going to say “that’s nice, dear”.
Funny old day today. Not funny ha ha, but funny odd. Odd how memories trigger some strong emotions, funny how some body parts are more closely associated with our sense of self than others. This is probably going to be a TMI kind of blog so feel free to bail out at this point. Or if you are interested in the workings of my ovaries please do continue…..
Having been sent to SAU in November (I think, a while before Christmas anyway) with abdominal pains, my GP had diagnosed appendicitis and was most disappointed when I informed her I had my appendix out 40 years ago. So I had to be dispatched suddenly to hospital. Having been told by the nurse it was probably an ovarian cyst, I was unlucky enough to be seen by a consultant who specialised in bowels (obviously failed all the other more glamorous organ modules in Med School….) Anyway, he had the last laugh as I endured a colonoscopy on his instruction. A procedure not made any more pleasant by the fact I could see the whole ‘journey’ on a TV above my head. As predicted the nurse was right (they usually are) but I suppose seeing my own colon will make for an interesting story to tell my grandkids.
So having established it wasn’t a bum issue, I was sent for a scan. This found a small ovarian cyst, 3cm in diameter. According to an NHS rule we don’t worry about anything that small. I was sent away feeling ashamed that me and my little cyst had caused such a kerfuffle. But the kerfuffle continued – painfully – so I was re-scanned. My little cyst had grown probably because I was feeding it a lot of cake, to 4cm, still not big enough to warrant NHS intervention. Since then, on and off, this little cyst has blighted my life. I won’t go into the details, but needless to say they are pretty gory and beginning to affect my daily living. Such things can upset the balance of a Wonder Woman’s day, so I got referred to a gynaecologist.
There was some trouble with cancelled clinics and rescheduling appointments and I ended up in a private hospital as an NHS patient. I had to take Wonder Boy with me because he wanted to look around a local college today and I figured I could endure a glance up my cha cha and a college visit in one day. Wonder Boy didn’t ask why we were going to hospital and seemed to be enjoying the morning out until he had to pay 50p for half a cup of tea, an indignation he didn’t take well and informed anyone who would listen that it was a “fucking disgrace”. I do love him so sometimes.
It had occurred to me in the darkness of the night that a surgical intervention might be suggested. I came to this conclusion because everyone in SAU seemed surprised that I hadn’t had a hysterectomy, the middle aged woman’s operation of choice it seems. I quite like the fact that I have all my relevant body parts shambolic as some of them are, I’m really quite attached to all of them, but those ones in particular.
I have a very nice consultant, although 20 minutes isn’t quite long enough to use words like cancer, removal, D&C, anaesthetic, bleeding and pain in my view. Sorry, did you say cancer? As a doctor I suspect he uses this word more than me. As a gynaecologist I imagine he suggests removing ovaries quite often. As a pragmatist it probably doesn’t occur to him that I might need time to process my options to stop the pain. I always get a bit chatty when someone starts bandying about a speculum so I explained to my lovely consultant that I was really rather attached to my ovaries and could we just leave them there if possible. “Why? You don’t need them” he said with all the authority of a man who regularly chucks ovaries away. It dawned on me then that actually my ovaries were more than just a body part, they were an identity part.
I have lots of identities that I am quite proud of, friend, sister, daughter, lover, girlfriend, carer, psychologist, (nearly a) Dr. But the one I’d have on my tombstone is Mum (or maybe Dr. Mum… ) I want you to think I’m the sort of Mum you see in Doris Day movies, the ones who look great in a pinny and make their own ketchup and are always happy and fun….. But I’m not one of those. I’m more wounded lioness protecting her offspring by being scary and grumpy. And who the f*&k makes their own ketchup anyway. So it seems to me that if my ovaries end up in the bin that’s quite a big deal to my identity. Not that I’m crazy enough to have any more children but I quite like to kid myself that I could if I wanted to. Ovaries mean I can mother and mother is who I am.
So if you are a consultant gynaecologist could you give us patients a bit more than twenty minutes to process what you are asking of us. I know you do five laparoscopies a week but this will be my first and I’m a bit of a control freak so being unconscious while you make all the decisions doesn’t sit well with me either. I don’t even sleep as a rule so, you know, being out for the count is not easy for me. Also, because we only had twenty minutes I couldn’t explain to you that 35 years ago I took part in a longitudinal research project which charted young women who were at risk of developing pre-cancerous cells in their cervix, so I’ve always been a little anxious about that, even though I know there is no real elevated risk. And because we only had twenty minutes I couldn’t explain to you that the last time I visited this particular hospital it was to have a D&C after a failed pregnancy which despite the intervening 21 years I was promptly reminded off when I pulled up in the car park. So medicine isn’t all about identifying the problem and treating it, it’s much, much more subtle than that.
But at least now I know I can offer a précis of my PhD study into intimacy and dementia to a consultant gynaecologist in the time it takes him to examine my hoo hah. Didn’t want it to be an entirely wasted trip……
I recently presented at the Alzheimer’s Europe conference. One of my fellow presenters spoke of grief and residents on dementia wards. She described how older people often move to other wards, other homes or sometimes die. She also described how we never discuss these moves with other residents. We assume that they don’t understand or don’t care.
I was reminded of this presentation this week when I was talking with Wonder Boy about the possibility (now reality) of his transport changing again. He made a really wonderful observation. Will the boys know where I’ve gone? The ‘boys’ being his fellow travellers.
Suddenly, I saw the home to school transport issue as something much broader than just massively upsetting for Wonder Boy (and therefore his family), but as potentially upsetting for all those who travel on the bus with him. What is their understanding of where people go when they suddenly disappear and does someone take the time to explain?
Wonder Boy is transferring from the main campus to a small satellite unit in a different location. This means a change in transport route. Historically, these moves have always been very problematic for WB. The last little episode resulted in the promise of an investigation. This would take two weeks to complete. I ended up on the radio and hey presto I received a letter from MKC that very day. The letter assured me they took my concerns very seriously, they would feed this back and endeavour to do better.
So it was with some optimism that I called on Friday morning to enquire what the situation was after half term. Would the current driver who Wonder Boy now loves still be his chauffeur? Ah well, I don’t know. Have you asked the school? Yes, they don’t know either, because it’s your job to sort out???? Yes, but we have lots of routes and lots of people to worry about. I appreciate that, really I do, I just want to know if there will be a change or not. Wonder Boy will not cope at all well with change. I’m not daft though, I mean I understand that the world can’t bend to accommodate his every need, but forewarned is forearmed. You see, without prior knowledge I can’t really stop the meltdowns. I can’t guarantee that Wonder Boy won’t react badly on Monday morning. I doubt he will hurt the new driver, but well, it’s not what you want on your first day is it. Plus, it means that I have to be sure that I am available to drive him to school, because he won’t get in a taxi when he is extremely distressed. As an aside, he’s 5’8” muscly and strong. I’m 4’10” and middle aged. So if you could just tell me what I can expect that would be super. Ok. I understand, I’ll talk to my manager and one of us will call you back today. Thank you so much J This is already causing tension so that would be hugely helpful….. Only you didn’t call me back neither did your manager.
As a result my Valentine’s Day was spent showing my love by calmly dealing with meltdowns or is it challenging behaviour, kicking off, losing it, going beyond yourself with rage….. I never know the right term to describe an emotional outburst which is frightening to watch and must be bloody terrifying to experience. I don’t think he would hurt me during these episodes, but he can lash out at things, doors get kicked, walls get punched, angry words get shouted, hurtful things get said. I know that I have to centre myself and remain calm to support him through this stuff. But I share his frustration and rage that because someone didn’t take our request for information seriously that our day of love took a different turn.
I have known some families film their child during an emotional outburst and send it to authorities so they can see exactly what we face. But why should we? Why should we expose our children in their most vulnerable states just so people will take us seriously? So please MKC home to school transport don’t promise me another investigation, don’t pay lip service to my concerns, just find out if we will be having another driver on Monday and let me know. Then, work out a system whereby those young people who are hugely affected by change are better catered for in within your service.