This slightly sweary blog is written primarily for me to get down in words all the things that are swimming around my head. It is also written evidence of the painful stuff we are having to deal with, if you know us and want to understand us better, please read on. It is also aimed at anyone who is considering moving a loved one into supported living. I feel you, if this helps then I’m glad. Much love xx
‘There is a darker side to caring, which people don’t understand’. In one sentence she had summed up everything I was struggling with. There is indeed a dark side and its one which you find hard to talk about and when you do try and discuss it, you are not always heard. The challenges of caring for WB have been compounded this year. Working from home, the stress of losing a business, having a carer who can’t enter the house, adult children who have had a taste of freedom having to live at home again, no respite, or access to friends have all shown bare the tensions within our relationships. I am exhausted by it. I am the epicentre of all things in my house, I am the one who is expected to know everything from where their pants are to what the weather is doing tomorrow. I am the font of all knowledge. This role plays to my skill set, having lived with someone who is on the Spectrum for 24 years, I have honed my planning and organisational skills to expert level. However, I am also a menopausal woman and just about everything seems to be conking out, sagging or falling off altogether. I am no longer physically or mentally able to manage five adult lives, support three business and work a .75 contract in academia. I’m tired. I just want to sit quietly and read books ffs.
From a psychological point of view (and this is not my area of interest so is little more than a lay theory), I think there is some sort of man power thing going on here. Wonder Boy might think he is the alpha around here and sees the Clown as a contender. There does seem to be a fair amount of rutting horns and willy waving. It is all fruitless because anyone who spends more than five minutes in our house recognises this an Amazonian style set up filled with warrior women. WB can willy wave all he likes…
The Clown is not concerned about his status in our pack. Early on he acknowledged he was in awe of the Youell women and our intellect and happy to support us in achieving whatever we wanted to achieve. He is a wonderful human. The Clown is concerned with WBs attitude towards me – a point on which they regularly clash. Their relationship has broken down so much now that if they were seeking a divorce it would be because of irreconcilable differences. The effort to get them to reconcile has been the main bloody of focus of my year…. It’s been an on off, on off relationship which as far as the Clown is concerned is now definitely off (I agree, WB has pushed him to the very limit). Having said that, please do not assume that the issue is solely between the Clown and WB – it is not. WB is an equal opportunity arsehole and we all receive our fair share of being sworn at, lied to, glared at, manipulated and played. There are occasional highlights but mostly the outlook is gloomy.
Somebody once said to me that they thought that my best feature was my ability to see everyone’s perspective, that’s why I helped people I didn’t agree with or even like very much. I have never forgotten this, it put into words my core underlying values. I think we should all have a seat at the table and an opinion, but we should all strive to help one another in that process too. That is where I deviate from others. The world is too hell bend on individualism for me to cope with anymore. I can see everyone’s perspective, I have the ability to ‘forgive and move on’, but not everyone can, which I respect but find hard to work with. I am also a big fan of an apology when you fuck up, which seems to be another aspect of social life that is now less common.
I do understand, I’m not perfect, not by a bloody long chalk. I cannot forgive everyone, sometimes it takes years for me to move on from things. I can hold onto the big upsets for a LONG time especially if they are unresolved but I am always open to a way forward. The closer the relationship, the keener I am to work at it, just for pragmatic reasons if nothing else. Those I share a house with are the priority, its proper shitty living in a house full of tensions. Whilst I totally understand where everyone is coming from, I’m exhausted from listening to all sides, making suggestions, mediating, cajoling, and generally managing relationships. I just want to sit quietly and read books ffs.
This year saw my youngest spawn venture out into the world to Uni. The anxiety of sending a child into an environment with others coming from all over the country in a global pandemic was palpable. I think BJ was hoping for some sort of herd immunity in the under 25s, what actually happened is that we subjected lots of young people to forced isolation, contamination and despair that they missed out on a proper Freshers Week. The scientists had been dubious about herd immunity and they were right, but we don’t tend to listen to scientists anymore. I can’t quite believe that I am looking back on the Victorian era of science and yearning for it again (but without all the misogyny bollocks) when scientists seem to hold status and whose opinions were valued. The upshot is that the university experience has left many short changed (at just over £9k a year, undergrads have every right to complain) and more than a bit scared. I wanted the baby Youell home where I could keep her safe. She opted for the slightly riskier option of staying at Uni, drinking vodka on the beach and travelling by train to see her boyfriend. When we spoke about why this might be, she disclosed she was sick and tired of the ‘dramas’ in the house. She literally cannot stand it and has no desire to return (she is more like me than she will ever acknowledge!) I admire her hutzpah but it makes me unbelievably sad that she doesn’t like being at home.
The middle Youell came home to see me for my birthday in March and got caught up in Lockdown 1, summer, placement and now lockdown 2. Poor love, literally came home for the weekend and has had to endure our company for eight long months. She is a final year student who has missed out on most of her year two placement opportunities because of Covid. She has missed out on vital peer support – although I have to say young people are so much better as forging relationships remotely, we could learn more than a thing or two – working 12-hour shifts, commuting and then coming home to the many challenges of Wonder Boy. She has soldiered on but I can see the effect it is having on her. She is the most compassionate and understanding of the Youell clan. If she is getting pissed off with it all then we know it’s bad.
Wonder Boy is oblivious to all this. We have told him, we have calmly discussed it, we’ve all stormed out on occasion because of it (as an aside it is REALLY hard to storm off in a lockdown, you literally walk to the shed and back), we’ve cried, shouted, drawn mind maps, lists of things to try, I’ve bought endless numbers of books offering advice, I’ve spent hours Googling, searching for miracles. The hours and hours and hours we have spent discussing options, debriefing, going over and over the same conversations. How much longer can we do this? We are all adults now, we want our own lives. It’s time he moved on… and there it was. Out in the open at last. My worst fear.
The pragmatic side of my brain agrees. We cannot care for WB forever, I have been adamant since day one that he would live away from us as soon as he is able. Hopefully, I will die long before WB, so I need to know that he is safe and happy living his best life long before I go. If WB didn’t have his complexities, I would have been nudging him gently towards the big wide world some time ago. Twenty-four years is a long time to put your own life on hold. This is the order of things, you raise your children as best you can (and we all fuck it up a little bit, so give us a break kids) then they leave home and hopefully do their best with the skills and wisdom you have imparted, coming back to you occasionally to raid the biscuit barrel and tell you all about their life and don’t ask about yours.
The issue is my emotional brain. That warrior Queen does not want to let go of him just yet. She acknowledges there will be no ‘perfect time’ to arrange supported living but just now it feels all too painful, raw and upsetting. I needed some advice. My first port of call is always WBs Dad. I consider myself utterly fortunate that I have a fairly positive relationship with my ex-husband. I have seen the misery of separated couples who can’t even speak to one another with spitting bile. It is horrible to watch and must be even harder for any kids who are forced to pick sides. It’s my least favourite adult behaviour. I have always assumed that my children’s father felt as strongly about our gorgeous children as I did. It would have broken my heart to not have had contact or a functioning relationship with them so I work hard to support them to maintain a relationship with their Dad. It’s not easy but it’s the right thing to do.
Over a pint WBs Dad and I talked about what we should do for the best. He is an experienced social worker and tends to put his professional head on when thinking through WBs future. I have my emotional head on but work within best interests as best I can. We are the dream team for care support. We are super knowledgeable and experienced. We are also lucky to have very understanding partners who are not in any way jealous of the continued relationship we have. They appreciate that we have difficult decisions to make, that we will be forever in each other’s lives because we share children and despite the fact we can’t live together we still don’t want anything bad to happen to the other. Our partners are good people.
WBs Dad told me that they were planning on taking an extended trip next year, touring Europe with a view to buying a place abroad. I think this is a great idea for them, but a fucking nightmare for me. This means no alternate weekend respite – FUCK. We talked about WBs behaviour. ‘This is an emotionally abusive relationship Jane’ and, just like a recognition of the darker side of caring, I was forced to recognise what was really going on here. He was right, having a relationship with WB is emotionally abusive. I had long had a wisp of an idea but he had named it. It felt uncomfortable. If I were in an emotionally abusive relationship with a lover, I would leave them, but with a child hmmm that’s a bit trickier.
It’s tricky because you don’t want to have raised a child like that. You go over and over in your head where you went wrong. What values did you not instil? Where the hell did he get his notions of masculinity from? He is surrounded by capable, strong women – his Mum, sisters, Nan’s, aunts these are all phenomenal women. Is that the problem? Have we not given him suitable feminist male role models? My Dad certainly was not a feminist, neither is WBs Dad if we are being honest. The reasons why ping around my head, usually at 3am., trying to figure it all out. Holding onto the belief that if I can understand it, I can fix it or change it. At the end of the day, it matters little how we got here, it’s what we do next that we need to figure out. WBs Dad thinks it’s time WB moved on. He cannot, and will never, be able to live independently in WBs Dads opinion. It’s time we considered supported living options. Thanks for the advice, I will mull it over. I cried on the walk home.
Our care worker had noticed the impact WB was having on the relational wellbeing of the family and had mentioned it to his colleagues. Help was offered in the form of a chat and a coffee with our care agency manager. I value her opinion. She was very candid and honest. After my meeting I had a better understanding of what our options were, how the systems works and how, in her experienced opinion, it was time for WB to move on before everything got so awful that all the relationships we were trying to hold together broke down. I value her opinion not only because of her vast experience, but because she is also a Mum with a son very much like WB. Thanks for advice, I will give it due consideration. I cried on the walk home.
I had previously called on our local carer’s charity for support in February. I had a chapter deadline looming, was finding all the moaning about WB difficult to listen to (yes, I agree, he is an absolute prick sometimes, no I don’t know what to do, can we please talk about something else for a while?), it was winter and dull and news of a horrible virus was beginning to circulate. I rang the carer’s hotline. I was absolutely fine when I rang the number, I just wanted some advice about assessment. By the time the woman had answered and said her greeting I was in floods of tears (I have just edited this word. I had initially written fears, not tears, a Freudian slip if ever there was one). The dam had broken, I was not coping at all. After long discussion her advice was to give up work if I could afford to do so because that was the only variable that I could control. WB was being awful, the Clown was not managing it well, the girls were spending all their time in their rooms emerging only for food. My long commute and weekly overnight stays were really not helping. I was needed at home. Thanks for your advice. I will think about it. I cried for most of the weekend.
I mulled over a resignation letter before deciding that no, I would not give up my job that I love, that I have worked incredibly hard for. Yes, my salary barely covers the bills but I am proud that I have never had to seek unemployment benefit ever. I have skills I can offer the world and I want to use them. I just need to work harder at managing everything – this has been my mantra forever, just work harder, a philosophy instilled in me by my parents in the belief that if you worked hard you would reap rewards. They are wrong. The world is different now. Nonetheless, I love working and want to keep doing it. Why do I have to choose between working and caring? Can’t I have both? I called the adult social care team. They will support me…. (ha ha I’m such a dumbass sometimes).
I rang the social care team. WB is out of education, training and work officially a NEET, he’s not coping very well, I need to work to keep a roof over our heads, Covid is proving very challenging for us because we can’t get away from each other – Yes, we understand you are due a [statutory] review in May – That was two months ago – Yes, sorry about that, things are really difficult at the moment – I understand that, but please as soon as you can… It took months and lots of phone calls with me crying and talking about how we can’t cope anymore to get a social worker to contact us. Eventually we had a visit. Not from a social worker we had worked with before but a new one who proudly told us she didn’t like to read the file but preferred to do the assessment afresh. I can understand why, but if you do it afresh you have no idea of the struggles and challenges that have gone on before, you have little notion of just how close to breaking point this is, surely?
The assessment was done at home, socially distanced. It was us and them. WB was flanked by me and his sister. In the run up to the meeting me, Middle Youell and WBs Dad has made written statements about how difficult things were and the impact it was having on everyone. We were experienced enough in this game to know that ‘person-centred care’ means we only have to listen to their client, not his family. The process is set up so you have to slag off your loved on in front of them during an assessment. This is a crappy way to do things so we provided written input so SW could hear our perspective without WB having to hear it too. What we thought was to be an assessment was, in fact, a pre-assessment appointment. WB behaved impeccably, showing little sign of challenging behaviour and certainly seemed shocked when we suggested that what WB was saying wasn’t actually how everyone saw things. WB stated he was more than happy living at home, he loved his Mum, his step Dad and his sisters, thought his care provision was adequate and saw no problems or issues at all. We kept our fingers crossed that the SW actually read our written accounts.
The SW agreed to come back and do the assessment proper, perhaps alone just with WB would be better she said. I love WB with all my heart, body and soul but he is a master manipulator – he would make a bloody good con man. He can convince just about anyone (for a short while) that he is perfectly capable and that his family just worry too much. The new social worker bought this hook, line and sinker. She suggested that all that was needed was to allow WB more freedom, not for the first time I was being viewed as an overanxious mother. We do seem to embrace parent blaming in my local authority. SW suggested that perhaps WB could go to the shops on his own? WB had obviously painted a picture of something bordering on Deprivation of Liberty. I explained that WB does go to the shops on his own. In fact, just a few days ago, he was sent to the Co-Op to get bread, a trip that should take no more than twenty minutes. He was gone for well over an hour, his care worker arrived and I had to explain I had no idea where he was. He returned almost on cue and explained that he has gone round all the charity shops whilst he was at it and bought some new mugs (one with something endearing about Mothers on it). I really don’t want to clip WBs wings but he has no understanding of how anxious everyone is when he goes AWOL. If he had said I’ll get the bread and might look around the shops that would have been fine, but he (and I believe deliberately, because he likes the attention he gets) doesn’t tell you his plans.
SW said that WB liked to visit his Nan. Yes, he visits her every week with his care worker. Perhaps WB could cycle there himself? Erm…I’m not sure…. ‘WB’ says the social worker – ‘what would you do if you were cycling on your own to your Nans house and you got a puncture?’ ‘I would decide whether I was close enough to home or Nans to walk my bike there or I would try and fix my puncture. I have a repair kit’, he says confidently. SW beams at him and me, ‘excellent, I think you can assess the risk and should cycle to Nans on your own’. ‘I’ll go this Friday’, says an excited WB. ‘Hold on, hold on’ I interject ‘Having a puncture is not the only bloody risk of cycling to his Nans house’ I point out. SW gives me her best ‘try not to be an over anxious mother’ face. So, WB cycles to his Nans and back. Nothing bad happened, but he did make up a story of being stopped by a kid and asked how he can ride his bike without holding onto the handle bars or looking where he is going. It’s a bullshit story aimed at pushing my buttons and creating anxiety.
When I told his care worker that SW had suggested WB cycle to his Nans unsupported he was horrified. To give you some idea of why he was concerned, he has had to fill in two accident reports in the last two weeks because WB is reckless and a danger to himself and others (including other vehicles) when cycling. The care agency refused to support WB in this activity until a new and comprehensive risk assessment had been completed. SW didn’t speak to care worker when completing the assessment because we absolutely cannot, will not, work in a joined-up way in my local authority.
Weeks later (Friday of last week to be exact) I receive word from SW to say she has almost completed the assessment. She has (finally) read the written accounts his family submitted and feels that we should consider moving WB out of the family home. Why don’t I think it over at the weekend? Thank you for your advice, but I have thought of little else over the past year, but welcome to the party better late than never.
So here I am trying to decide what is best for WB and the rest of my motley crew. I have read the Care Act, I have listened to the advice of others who I respect, I’ve even listened to those who I don’t. What is missing from the legislation and the advice is the emotional turmoil the decision maker will go through. Who do I trust? His Dad who wants to bugger off to France? His agency manager who wants to house him (this is not a free service by the way, so she has a financial interest)? His SW who just wants him off her caseload? His family who are sick and tired of the strain of it all?
At the heart of it is me and WB. ‘What do you want my love?’ ‘I don’t want supported living Mum.’ ‘But we can’t carry on like this my darling.’ ‘I know but I can’t stop it, I’m sorry.’ ‘I know WB, I know. You just want it to be me and you don’t you.’ ‘Yes, that would be nice…’
This hurts because as my fundamental belief is if you love and care for someone enough it will come right. But I have loved WB, the Clown and my girls more than I have loved any others and still it’s not enough. Could we not just try a bit harder? Could we not just be a bit more understanding? Could this not be so bloody painful?
‘Hypothetically speaking – because I am only giving this the briefest of considerations at this time – what if we said it was time for WB to move on. What would happen?’ I put this question to all those whose advice I sought. The unanimous response was – that I would have to say I could no longer care for WB, (what is fondly referred to as carer breakdown in my LA – they love a scapegoat here) in fact, it would probably be better if I said I was refusing to care for WB and I wanted him gone. ‘Will he know that I have said this?’ It will be on his notes, but I’m sure we could do it kindly. ‘What if I don’t say this?’ You don’t get the support and you carry on as you are now. Only from our experience it will get worse… Asking a carer to state that they can no longer care for a loved one to get the support they need is a bloody inhumane way to run a service.
So here I am trying to figure out what to do for the best when all I want to do is sit quietly and read ffs.