Should he stay or should he go? Decision making and supported living

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.

Answer your phone Mother!

As a general rule, I don’t work Fridays.  The idea was to reserve one day a week for consultancy work as I swim in the mire that is the academic job market of temporary contracts and limited options.  Always keep a little space for a side hustle.  Since the COVID-19 outbreak Fridays have become a rest and recharge day, a sanctuary away from the idiocy that is Trump’s medical advice and the ineptitude of our own Government.  I find I am exhausted by the week, especially living the life we do, punctuated with such dramatic storylines that even a soap opera would reject.

After the emergency ER run last Friday when the Clown decided just for shits and giggles to try and cut off two fingers with a circular saw, I was looking forward to a chilled-out Friday.  Before I continue, just to reassure everyone the Clown is fine.  We rushed to A&E for free, friendly and wonderful NHS care.  I ran into the main entrance to suss out the protocol given we are in the middle of a global pandemic.  I had stopped just outside the door on double yellows but given the fact that G looked like he’d lived through a Die Hard movie, I figured it would be ok.  I did comment on the fact that he looked like John McLane, what with the blood-spattered face and all.  He said between gasps of pain ‘This is no time for your Bruce Willis fantasies!’

We were directed to a safe zone where they were treating minor injuries and sat with another guy who had also had an unfortunate circular saw injury.  Apparently, they’ve seen a lot of DIY related injuries since lockdown.  I guess we are all watched DIY SOS and thinking we might give it a go…. To be fair the Clown is excellent at what he does and has built the most amazing summerhouse, it was just an unfortunate accident and we are very grateful that it wasn’t any worse.

 

So, with the Clown incapacitated and told to rest in front of the telly, Wonder Boy has a carer on Fridays to support him at work, so I didn’t even need to get dressed today if I didn’t want to and the girls won’t venture out of their rooms until they’ve watched at least one episode of Drag Race and caught up with respective partners, before probably having a pre-breakfast nap and seeking food around lunchtime.  My plan was long hot shower, a bit of pampering and then head out to the garden with a book.

 

I checked my mobile which I was charging upstairs to see I’ve missed calls.  Not a number I recognised so listened to the voicemail.  It was my aunt, Lillian, whom I adore but we don’t talk much on the phone.  I know my uncle is very unwell in Australia and braced myself for sad news.  The message said Lillian was worried about Mum, their brother (not the ill one, another one) had phoned from Australia but couldn’t get an answer, so contacted Lillian to see if she could get in touch with Mum.  Lillian had been trying to call on the mobile and the land line but to no avail.  Everyone was worried.  Could I call back.

 

I don’t really worry about my Mum.  She’s in her 80’s lives about a mile up the road from me and apart from a slightly painful hip, she is fitter and more mobile than me and on a lot less medication.  She’s a little Northern woman and has spent most of her adult life in a small village where you had to be resourceful.  She’s the type who would break her wrist and not tell you for a few days because she didn’t want to cause a fuss.  The type who would set the bone herself, tie it up sturdy with t’j-cloth and carry on with her t’working day, lass.  (My mother doesn’t talk anything like that other than in my head.  She says bath as in Kath and she quite likes whippets, other than that you wouldn’t know about her Northern roots).

 

My mother usually has a stream of visitors.  She has this group of Prosecco Queens, a bunch of middle-aged lushes who try and out-drink her periodically (they never will, the woman can drink three bottles of Prosecco and a quart of gin and still be standing).  She has friends and neighbours who drop by, Wonder Boy and his carer are regulars for bacon sandwiches and laughs.  However, Mum has been in lockdown slightly longer than the rest of us.  After watching the news from Europe, I got cross with her and told her to stay the f**k at home and ban visitors.

 

What this has meant, of course, is that the usual support network of visitors I rely on to let me know if anything untoward has happened is no longer there.  It has occurred to me that she could have a fall or a stroke, a high temperature or infection and I may not find out until it’s too late.  Between us we try and stay in touch as often as we can by text.  She phones with her regular Prosecco and gin requests which we leave on the garden arbour like some kind of food and booze Checkpoint Charlie spy exchange situation.  She’s doing fine she tells me, she’s done all her puzzles and has taken up keep fit (a phrase I haven’t heard since the 70s).

 

I was a little concerned though that Lillian had not been able to get hold of her.  She has a small cottage and a mobile which is near her at all times.  Lillian had tried the mobile and land line several times.  Operation ‘increase my blood pressure’ kicked in.  I rang Mum’s mobile.  It rang and rang and rang and rang and rang.  I was getting worried, I was telling the Clown Lillian couldn’t get her and now Mum wasn’t answering the phone.  I’d tried the landline but it had gone straight to an answerphone message.  I had images of her falling dramatically as she’d tried to grab the phone and was now lying on the floor….  Then she said ‘Hello’.  In less than a second all that love, care, concern went out the window.

 

Me: “For God’s sake mother, where have you been?  You’ve caused an International Incident!  Harold phoned Lillian, Lillian phoned me.  You are in LOCKDOWN, where the f**k were you”.

 

Her: – laughing, because this is hysterical, obviously.  She’s probably had Prosecco on her cornflakes – “I was in the shower.  I’m on the phone now with Harold in Australia”

 

Me: “But they’ve been ringing you all morning, why didn’t you answer the phone?  I’m glad you’re ok, I’ll let Lillian know. Jeez.”

 

Her: “Hello, hello? Oh she’s gone”.  Then I hear her say to Harold “That was Jane she says I’ve caused an international incident!”

 

Me: “Mum, I’m still here you mad old bag.  MUM!  MUM!  I CAN HEAR YOU! HANG UP THE MOBILE.  MOTHER!!!!!”

 

I phoned Lillian to explain that Mother still lives and had a jolly good laugh, so all’s well that ends well.  But a word to the wise, old people – answer your bloody phones!

 

Wonder Boy is not OK

 

It’s been a hellish few days and now as things relax back into some sort of reframed normality I wonder how we ever got through it all.  As always the wonderful circle of care kicked in, friends text offering help/listening ear, social workers were contacted, crisis packages discussed, Steve the ever patient care worker accepted my ‘dump and run’ approach without complaint, the best boyfriend in the world patiently listened to my little sobs and big rants down the phone.  I recalibrated what WB needed in this time of crisis and reached out to anyone who would be remotely useful.

 

What is abundantly clear is that WB would not have been able to navigate any of this alone.  The initial call to 111 meant that as WB is over 18, he had to do his own talking.  The nurse on the end of the phone was nice but the questions were not very WB friendly.

 

“Some of these questions may not be relevant”

“Then why ask me?”

“Put your hand on your stomach, does it feel warm?”

“I don’t like people touching me.”

“Touch yourself.”

“That’s weird.  Mum, she’s asking me to touch myself”

“What colour are your hands?”

“What?!!!”

 

In the end

 

“Is your Mum still there? Could I talk to her please?”

 

Much eye rolling this end, we play this game a lot.  It’s good that they check.

 

The advice was to attend A&E immediately as this would be the quickest route to a psych assessment and this was very clearly what we needed.  A&E is not a very autism friendly place as a rule so I contacted the out of hours social care service and got the emergency mental health team who also advised that we attend A&E immediately.  The care and consideration we received in A&E was fabulous and I commend the staff who immediately tapped into the fact that WB was a. in considerable distress and b. was autistic.  We sat amongst the Sunday morning football/rugby injuries and one guy who came in with an impressively large, blood stained eye patch.  It was crowded, it was too bright, it smelled funny and it was noisy (if you need to go to A&E by the way, don’t bring half your bloody family with you.  If you are well enough to be laughing your head off at your mates jokes, you’re probably well enough to go home and see a GP the next day – just saying).  WB sat with his eyes closed until we were called in.

 

Saw a nice member of the mental health team, WB was unable to engage in much during this assessment. I think he was just exhausted to be honest.  Had he arrived alone to A&E I doubt he would have been able to stay so probably would not have been seen.  Mental health team felt that WB would be better off at home – I did too, but already my brain was whirring away at what deadlines I had to meet and what impact this would have on my work.  I had, of course, informed WBs Dad but his work is very important man work [heavy sarcasm] so the burden of care falls to me.  Mental health team would update us the next day, WB would be discussed in team meeting and a decision about what support he would need would be made. Perhaps a psychiatrist would see him.

 

WB was signed off sick. A concept which he did not understand at all, he just thought that if you were unwell then you could have time off work.  You can, but only three days I explained, then a doctor has to say that you are not well. They sign a thing called a sick note, then your employer knows that you are not just lying about being poorly to get out of work.  There are so many important life things that WB just doesn’t know.  The GP was very kind and suggested we write a sick note for four weeks because ‘we need to be realistic’.  I agreed, we were in unknown territory here, WB had never reported hearing voices before, he was in a bad way and I had no precedent as to how long recovery might take. Four weeks without him going to work was going to put a great strain on things at home though.  We have the ever patient Steve three times a week and we just about manage, although we have no care package on a Tuesday afternoon and that is always a bit of a strain.  Fridays are ok now as my 6-month contract has ended so have Fridays off again – more time, less money.  We’re gonna need a new plan.  Brain trying to figure out the implications of it all.

 

Two days compassionate/carer leave to put new plan in action.  I’m good in an immediate crisis, I can evaluate a situation, determine what the best course of action is and get the ball rolling.  After the immediate impact has hit, I’m not so good.  There were tears of frustration, there was strain, anger and guilt.  There was doubt that I could do this again.  The weight of responsibility rested heavy as I watched my family resigned to the fact that WB had again stolen the limelight and their needs would be pushed further down my agenda.  Then back to work,  thank goodness for the respite that work offers.

 

The result from the Mental Health team meeting was that WB needed an urgent assessment by a psychiatrist – appointment Friday.  Did they offer him anything to help him sleep?  No that’s what Friday is for.  WB doesn’t sleep because the voices he hears sound too loud, sitting with someone helps, watching TV helps a little, music doesn’t.  The best boyfriend in the world often found me dozing in WBs room and gently guided me back to bed.  I can endure many things, but without sleep things are not good.

 

Meeting with a psychiatrist on Friday went well.  WB disclosed all sorts of things that I hadn’t understood and my heart went out to him.   He would need medication and maybe some CBT in the future.  He agreed to take meds and just wanted to ‘feel better’. Psychiatrist explained side effects of meds – I know she has to, but that just feeds into WBs hypochondria. He will have every side effect on the leaflet, I made a mental note to take the leaflet out of the packet. Psychiatrist sent an urgent prescription request to our GP and told us to give them a call when we got home. Some practices are really good at just accepting a psychiatrist request, some GPs like to see the patient before signing the script.  She didn’t know which category our practice fell into.  I phoned the GP in the afternoon and explained the situation.  I explained the meds wouldn’t kick in for at least four weeks and therefore we needed to start them asap.  Sorry, that won’t be ready until Monday.  Can you ring back Monday afternoon please?

 

Monday afternoon, whilst answering emails and printing stuff – you know, like, doing my job – I’m the seventh caller in the queue.  Finally got through but prescription not printed, would be ready next morning.  I pointed out this was an ‘urgent’ request. There are lots of urgent prescriptions waiting to be signed, I was informed.  Could I phone back after 5pm please it would be ready then.  5pm call – it’s not ready, phone tomorrow after 10.30am. Tuesday 10.30am – it’s been printed but not signed.  Phone after 2pm.

 

2pm call:

“it’s been printed but not signed”

“yes I know this, I’m just being fobbed off now.  This is an URGENT request, my son is in crisis.”

“Please hold.”

EURGHHHHHH!

“We have found the prescription and will get it signed this afternoon.  Can you call back at 5pm?”

“It’ll be ready at 5pm?”

“Yes.”

“Right so if I come to the surgery after 5pm I can pick it up?  This is an URGENT request from last Friday.”

“Hopefully it will be signed.”

FFS.  Arrive at surgery at 5.30pm.  Prescription for WB please.  It’s not ready.  Look, this is an urgent request for medication which my son desperately needs. Unfortunately, this surgery doesn’t recognise urgent requests – I have no words so I blink quite a lot.  I must have been blinking with quite a hard stare because she said she would try and locate the prescription.  Something about if it’s in doctors pigeonhole.  I wasn’t leaving until I got it so was hoping for all our sakes that she found the bloody thing, I was armed with a sturdy brolly and a steely nerve so anything could happen.

I wondered how WB would handle this if it were up to him to navigate this himself.  Impeccably polite, he would be fobbed off, I have no doubt about that.

 

Prescription located, the receptionist tracked down the duty doctor and shoved it under their nose until it was signed.  When she gave me the prescription, I cried with relief.  Long queue in Boots and we have the meds – hurrah.  When explaining to WB that he had to take them with breakfast, he had to take them every day at about the same time, that they might give him an upset stomach and a bit of a headache, that he would feel worse for a couple of weeks then he should start feeling a bit better.  Probably too much information in one go.  WBs response – so, I take one at breakfast and then another one four hours later.  NO, no don’t do that!  One a day that’s all.  You must not take more than one a day.  The penny dropped that WBs previous experience of medication had been painkillers which you would take every four hours.  Ah autism, you wily fox, that is an aspect I hadn’t considered before – damn you.

 

New plan – supervised med taking.  The dog needs meds in the morning, we can do them at the same time.  Just don’t get them the wrong way round, says WB.  His confidence in my abilities seriously undermined, I decide that wine is the answer.  For me, not him.

WB has crisis, NHS saves the day

TW: contains reference to mental distress, voice hearing and suicidal ideation.

 

 

 

 

 

 

 

 

Wonder Boy is in crisis. He is reporting that he can hear voices which are telling him to curl up and die.  When he sleeps these voices become people who repeatedly stab him with knives.  He says it’s very, very frightening and has been going on for a long time, WB has trouble with the concept of time so is not sure just how long. His family have noticed a change in him in recent months so this explains a lot.  I am equal parts relieved that he has been able to find the words to explain what is happening and equal parts distraught that I didn’t notice the severity of his experience.  In retrospect, I should have seen this coming.

 

In 2017 Wonder Boy was very low.  We put this down to the fact that his beloved Grandad (G’Dad) had died a few months before. The permanence of death was difficult for WB to get his head around.  As it was my Dad who had died I found it very difficult to support WB with his grief whilst at the same time trying to manage mine.  WB was very low and it was obvious that we would not be able to manage this at home so we visited our very understanding GP.  The usual 10 minute in/out, what’s the problem, here’s some drugs kind of visit was replaced by a 45-minute slow and gentle assessment of the situation.  WB was given the time and encouragement he needed to talk about what was going on. I am still deeply grateful to that GP as I know he would have got it in the neck from the patients that followed us as they had been kept waiting for so long.

 

We were referred to the ASTI team – this is the urgent care team in our area.  Goodness knows what the letters stand for.  We met a nice mental health nurse and WB was articulate in explaining his low mood.  I was included in the assessment and was able to contribute to the discussion.  I was asked what I felt the priority was at that time.  I said it was lack of sleep.  Since WB was a small boy he has not slept well, I think this is common for people on the Spectrum, for WB I don’t know whether this is because everything is so overwhelmingly sensory that it distracts from sleep or whether he just doesn’t feel the need for it.  Either way its debilitating for his family.  When WB was quite young he would wander downstairs in the night and play with the gas hob or come and wake us up wanting a chat so we suggested that whilst he doesn’t have to sleep, he does have to stop trying to burn the house down. This worked quite well – we can still hear him banging and crashing about in his room sometimes, but he is less likely to come and stand over me while I sleep.  I love him and everything but that was bloody terrifying.

 

In the 2017 assessment I explained that WB was experiencing disrupted sleep again and that this was causing a problem for everyone else in the household.  You can’t effectively care for someone if you are exhausted to the point of just lying down wherever you are and sleeping, so I requested a prescription for melatonin to help us get through our current crisis. Melatonin is called the vampire hormone, it is secreted naturally in our brains when the sun goes down.  It’s the slow release hormone that makes us sleepy and eventually causes us to nod off.  It’s also the thing that gets disrupted if we stare at our phones before we go to bed.  You can buy Melatonin over the counter in the States but you need a prescription in the UK. When WB was about 15/16 years old his sleep pattern was so appalling that in sheer desperation I ordered melatonin on the internet.  I would never normally do this, but we were so bloody desperate and all our GP could offer us were sleeping pills which would have made him groggy during the day. Having literally exhausted all other suggestions to no avail I resorted to ordering online.  Within two weeks we were all sleeping through the night and we could function again.  I still get teary now when I think of how wonderful it was to wake up from the first uninterrupted nights sleep in months.

 

So, in the assessment I explained that sleep deprivation was the biggest problem and could I please have a prescription for melatonin, we had used it before to great effect, that as soon as we got back into a pattern of sleeping through the night I stopped the melatonin.  We came away confident that WB would be seen by a psychiatrist, properly assessed and we would get help with the sleep issue.  What we actually got was a phone call to say that WB would need a specialist mental health service because of his complexities (he is autistic but articulate and able to express himself once he trusts and understands the process) but that no specialist mental health service existed in our area.  We also then received a letter from the psychiatrist to say that melatonin would not be supplied as there was no evidence of the long-term benefits.  I know this, but I also know that in the short term it reboots WB’s sleep pattern which makes everything easier for his family.  I’ve only met three psychiatrists in the past twenty-three years – none have proved to be of any use, in fact, they mostly make things worse.

 

So that was that, we were discharged without any treatment or intervention.  I swallowed back down my own grief, kept calm and carried on, smoothing WB’s anxieties as best I could whilst doing all the other things. I’m not sure that WB every bounced back as much as I hoped but he seemed to be functioning.  The trouble with being mostly in a crisis is that it all becomes so normal and ordinary.  I still find myself staring curiously at people at the weekends who are cycling, shopping, walking with their families.  It seems utterly bizarre to me that other people don’t spend their time off working through difficult emotional battles, working out what care they need and when, emailing services, managing direct payment budgets, thinking through the next crisis management, negotiating with other family members for support so I can have a break.  It would be totally weird for me to not be hyper vigilant.  WB’s low mood and general malaise also became the new normal.  We all normalised it through the language we use – oh here he comes, cheerful Charlie – and even he began to accept that this was just who he was.

 

Fast forward two years – In the past few months, when life was showering him with apparent wonderfulness – he had left the college he hated, had been offered an apprenticeship doing work he liked, was suddenly pretty well off – he started to become increasingly difficult to live with.  Not challenging behaviour, nothing so obvious, but subtle changes.  Not being able to see the good in anything, he stopped talking as much and when he did, his world view was gloomy.  He was pretty belligerent about everything.  To motivate him to do anything – even his favourite things – was/is nigh impossible.  We didn’t want to hang out with him as he just bought the mood down no matter what we did.

 

Instead of seeing what was going on, for appreciating that there was something more serious at play here, my reaction was to cajole and coral him through the day, tell him to buck his ideas up, appreciate that he is loved and incredibly lucky to have such a good support network who are working all hours to support him.  You know, all the things you absolutely shouldn’t say to someone who is mentally unwell.  This was born out of panic mostly, I suspect.  I’m working two jobs, I have a large family who all have needs in varying degrees and I try to support all of them.  I’m aware of the eye rolls and the assumption that he is attention seeking when WB get all the attention again.  I try and make sure that everyone gets the attention they need but it’s exhausting emotional labour.  I understand their resentment but it’s not at all helpful.  It also means that I spread myself thin and don’t really think things through.  I’m more plugging the gaps and hoping for the best, frantically trying to keep everything on an even keel.  It’s absolutely exhausting.

 

In the past two weeks it has finally dawned on me that perhaps there is a more organic cause which is affecting WB.  Being able to see this as a possibility, things began to slot in place.  His sister came home for a surprise visit from Uni and commented that WB seemed to be going backwards in some (lots of) ways. The best boyfriend in the world agreed and is much better at identifying specific examples of his behaviour which were challenging than I am.  I try and engender a ‘forgive and move on’ approach with WB as this makes it easier to live with, I therefore have less of a tendency to hold onto a crappy situation than the best boyfriend in the world.  This means that I am mostly firefighting one crisis after another and don’t spend the time looking at the bigger picture, so I don’t see patterns in his behaviour in the way the rest of the family might.  This also highlights that me and G make a pretty good team J

 

WB’s mood was affecting other aspects of his life too, we deal with whatever we deal with at home in as best a way as we can.  We generally don’t discuss or reveal what we are dealing with because its private.  We smile fixedly as people comment on what an easy-going person WB is, knowing that only last night you endured another crisis which left you all mentally exhausted.  We all have a public self and a private self and so do families.  When we do try and talk about what it’s like, this is met with ‘ah bless him’ or worse still, well-meaning people offering us advice on how to handle the situation.  Unless you are another carer with experience of challenging behaviour or extreme emotional distress, please, please don’t give us advice.  You have no idea how bad things get and your advice has almost certainly been tried.  Trust me, we are absolute experts in this and know what to do most of the time and if we don’t we will seek help from an appropriate and trusted source.  If you want to help, just listen without judgement so we can offload.  That really helps.

 

I spoke to WBs Dad on Friday evening to get his take on things.  He is both an expert in WB and mental ill health so I value his opinion. He felt that WBs recent breakup with his girlfriend had perhaps impacted on him more than he was able to articulate (I’m not so sure, he seems to have moved on pretty quick to another girlfriend), he also recommended a GP visit and to contact the nice social worker as WB would not listen to his parents but would possibly listen to the Amazing Billy (WBs favourite social worker).  Unfortunately, the Amazing Billy was assigned to sort out the direct payment/care plan, now this is done we don’t have access to him anymore we would have to go back to the duty team and get whoever was assigned.  There is no consistency in care anymore.  But certainly, the GP visit was a plan.

 

However, things dissolved pretty quickly before we could action this.  Friday night saw me driving with youngest child to stay with middle child in Guildford before travelling onto Portsmouth Uni on Saturday for an open day.  We returned early Saturday evening.  WB, despite spending the day doing his favourite volunteer placement was gloomy, he looked all the world like some of the other patients I used to see when I visited my Nan on her psychiatric ward as a child. (She was a pysch patient during the heyday of haloperidol and electric shock treatments).  It is heart-breaking to watch someone in so much distress and not be able to help them.  We had a long chat about how important it is to look after yourself, enjoy the things that you do, engage with your family, how hard it was for us.  We can see it’s not making any difference, we are just exhausting ourselves so in the end we agree we would not discuss it anymore. We settled into an exhausted silence and watched the flames of the log burner glow and dance.  WB was slumped on the sofa with his eyes shut so we suggested that he take himself up to bed.  We followed about an hour later, tired out from the emotions of the last few hours.  WB appeared at the bottom of the stairs in distress. The best boyfriend in the world took his leave and slept on the sofa as I reassured WB that everything would be ok. I don’t resent the BB in the W for leaving us, one of our strengths is knowing when we need to bow out of a situation for fear of making it worse.

 

Over the course of the next hour, WB talked about the voices he hears in his head, about how they tell him to curl up and die, about when he goes to sleep he can see them, they feel real and come at him with knives.  He says it’s terrifying and in floods of tears wails ‘I don’t want to die’.  I assure him that he won’t die today, encourage him to have a warm shower, dry his tears and feel guilty that I really didn’t see this coming.  We eventually get WB settled in the spare room so he is closer to me.  We leave the light on as he is so scared of what is going on in his head and light helps.

 

Sunday was spent phoning 111 and the emergency social care team to get some advice.  We were advised that the quickest way to get a mental health assessment was to attend A&E.  The staff at our local A&E department were outstandingly brilliant. I am deeply grateful to them for their support.  The streaming nurse was friendly and understanding, she referred us straight to reception where the lovely receptionist engaged directly with WB and made him feel safe.  She took the time to search for a quieter space for WB to sit (there wasn’t one, but we found a spot where he could just focus on the TV which helped).  When I needed to nip to the loo she made sure WB didn’t leave.  We were triaged quickly and by a very compassionate nurse who contacted the mental health team and kept us updated as to what would happen next.  She let us out the back so we could get some food without having to traipse through the hospital.  The mental health team were very busy but would get to us as soon as possible. (Of course, they are busy – there are 5000 less mental health nurses working in the UK than there were in 2010 but the need for MH services has increased by a third in the last 5 years).

 

We were seen within five hours of our visit which considering the packed waiting room and the fact that we live in an area with poor mental health provision I thought was pretty good.  Having the safety net of the NHS is so bloody important, the thought that it will be sold off under the Tories just fills me with dread – I doubt there will be affordable health insurance for WB.  We were assessed, WB talked a little about how he was feeling.  I was asked what outcomes I would like.  I didn’t want him to go to an assessment centre, I did want him to sleep, I did want him to be properly assessed and a treatment and/or intervention plan put in place.  I told the mental health nurse about our experience with the ASTI team in 2017, he was less than impressed.  He explained there is another psychiatrist, not the one we saw before who would perhaps review WB.  Did I think WB would harm himself today?  Not an easy question, but no, I didn’t think he would.  Could I take care of him overnight?  Yes, I thought I could, but I would need to take a day or so off work as the nights were a lot worse for WB and I was already shattered.  I hate that my caring impacts on my work.  We were allowed to go home, with an assurance that we would be reviewed by the crisis team in the morning and that WB will get the help he needs to restore him back to his former self.   Thank goodness for the NHS, long live the NHS.

Never underestimate the work you do in early years…

For quite some time Wonder Boy has wanted to know what it feels like to fly.  In his earlier years this would put years on me for fear that he would jump out of a window.  There was the time he found a parachute on eBay and attempted to put a bid in…

 

As he has got older the lure of skydiving has occasionally pulled at him, even suggesting that he raise money for charity.  As his advocate I have supported his right to do risky things, as his Mum (with a definite fear of flying) I have made every effort to change the subject.

 

We have a local iFly centre where we live.  This enables people to float between two large fans so they can experience the sensation of flying without the risk of imminent death.  Wonder Boy has wanted to have a go for quite a while.  When I was footing the bill for everything, I was a bit reluctant to shell out the £40 for something that WB would probably not be able to go through with but now he has a bit of ESA he has some independent means and a lot more choices.

 

Today, armed with my left-over Christmas money (how does that happen when you have bloody kids?) WB and the best carer in the world, Steve headed off the iFly in the hope of a flight.  Before he had even left the house and despite the fact that this was what he REALLY, REALLY wanted to do, WB was already saying about his bad back, his dodgy stomach and all his other aches and pains.  It crossed my mind that Steve would earn his money today.

 

From what I have understood, they arrived at iFly and were welcomed by the reception staff.  The staff were fabulous with WB as his anxiety kicked in.  The best carer in the world, Steve, donned uncomfortable goggles and a safety helmet too as WB sat in the tunnel awaiting his turn, despite the fact that Steve wasn’t going to get a go.

 

iFly instructor, Ben took WB through and talked him through the whole process, appreciating that noise is an issue for the gorgeous one, Ben provided him with staff regulation ear plugs.  Talking him through it all, Ben understood that WB was worried about the fans and disappearing into the blades (probably meeting a grisly end, I know how he thinks) so asked the control room to turn the wind speed down so he could get used to it all.   I was sent photos taken by Steve of the whole thing and it was clear how proud Steve was of WB and his amazing achievement in flight.

 

I shared his sense of pride and just a tad of anxiety about how this might be the beginning of a very expense new hobby….

 

As I’m the first person to call out bad practice, I like to even up the balance when I see excellent care. I emailed the iFly people through their contact page to tell them how fabulous they were and that both Steve and I were impressed by their person-centred approach.  I got a response within the hour from someone who had met WB and Steve at reception.  It transpired that she had gone to school with WB in his early years when he was still in mainstream, and was able to give Ben a bit of a heads up.  Educationalists NEVER underestimate what inclusive education can do and how long those experiences last.  Thank you Tamsin, Ben and Steve – WB had a brilliant day and I was able to get on with my working day without worrying about him at all, which is what you want as a parent carer really.  WB is telling me they do family sessions  and that we should go together next time (next time!!) – I am not wearing a one piece and goggles, I fly on planes with complimentary wine thanks.

Post doc job hunting: the realities

Just for clarity can I start this post by stating that I absolutely love my job.  I don’t want my current colleagues to think that this post in any way reflects any negativity towards my current employer – it really doesn’t, they are fab.  The fact is, that my current role doesn’t pay all my bills and is only funded for 12 months, 9 months in I have no choice but to look for the next opportunity.  The thought of being without a wage terrifies me. Not sure why really, I would be better off on benefits, but all the women in my family worked and worked hard, I feel I would be letting the side down to be NEET.  Plus I am very skilled and want to utilise those skills and be useful to society.

 

The job market is a demoralising place to hang out.  Most of the roles that I think I would be good at, I’m not eligible for because I’m not a clinician (despite knowing A LOT about dementia).  Most academic jobs would require me to move, almost all have limited funding so are not permanent but fixed term, usually 12-24 months.  I’m good at getting interviews but not good at self-promotion so tend to bomb out at the final hurdle.  At least one job I suspect I didn’t get because I’m 50 – how do you even prove ageism in that situation?  Anyhow, I’m not having a good time engaging with this stuff.

 

I’ve set myself up on loads of job seeking apps.  You put all your details in and they send you jobs which meet your skills set.  My arse.  I had a notification the other day that one of these agencies had found my perfect job – welder. What?  How exactly does a first-class honours degree in psychology and a PhD in dementia care meet the criteria for welder?  Mostly they are allied health professions like OT, physiotherapist, speech and language therapist, nurse and a million other things I’m not eligible to apply for.

 

My initial approach was to only apply for jobs that I think I can 100% do.  Men don’t do this by the way, men apply for any job where 50% of the requirements meet their skill set so I decided to be more like man and apply for jobs where I thought I met 80%-90% of the requirements – I’m still working on the be more man approach.

 

Job hunting is an unbelievably dull and time-consuming process especially if you already have a job. Evening after evening, weekend after weekend trawling through what appears to be your dream job until you get to the last bloody sentence of the job ad where is states ‘must be an RMN’, or ‘must have PRINCE 2 qualification’ or ‘must be HCPC registered’. I’m none of these things so I swipe left, keep calm and carry on.   If you are lucky enough to find a job which meets your skill set and you are really interested in (there have been about 4 such jobs since I graduated none of them permanent) you have to set about applying.  Almost certainly these posts won’t be anywhere near where you live, have friends and family, kids in school/college, have partner who has roots, near your elderly mother, so you first google how much it will cost you to commute.  This will probably be about 23% of your annual salary so you knock that off and convince yourself it will still be worth it (even though you could earn more working in Tesco). You hope that you will be able to cut yourself a better deal if you get offered, a couple of days working from home maybe (which obviously means working much longer hours than if you went to the office because you wouldn’t want anyone thinking you were skiving), plus you write better on trains and being mostly insomniac getting up super early to commute will be a breeze.  Try not to think about who will care for Wonder Boy while you are pushing 12 hour days.

 

You think you will apply, not with any serious intent, you’ve long since realised that getting an interview is a major milestone in itself, probably worth a mention on your CV in fact.  You apply for the experience.  This ‘experience’ is a myriad of different forms.  No two applications are the same.  You spend a couple of hours a day wading through question after question trying to map your answers to the job ad, person spec and trying not to sound really bloody desperate.  It takes me a week or so to be happy with my offering.

 

You hear back if you have been shortlisted, you get nothing if you don’t.  Again, back in my day you would have a nice letter saying thank you for applying unfortunately you have not been shortlisted, sometimes with some really good feedback about how you can improve.  Not so now, there are hundreds applying for every job so you just get on with your life and hope for the best.

 

About three months ago I got a phone call from someone saying that I was expected for an interview that day and they were wondering where I was.  I had applied for the job about four months previously – so long ago in fact I had no idea what the post was because I assumed I hadn’t been shortlisted.  Their HR system had had a malfunction and had forgotten to notify candidates.  They rescheduled the interviews.  I didn’t get the job.

 

I’m now broadening my search.  I’m going to write to Kylie Minogue to see if she needs a body double – we are the same age and height (I’ll gloss over that there the similarity ends), I might apply for The Apprentice because I am much more capable than any of those numpties they get on there, I’m buying a lottery ticket when I can afford it and I might have to seek employment in the *said with hushed whisper*corporate sector.

 

I hope this blog goes some way of explaining to my family why I haven’t just got a ‘proper’ job.  I am trying.  I’m sure I’ll hear back from Kylie soon 🙂

Pride Week at Asquith Hall

It was a week ago – how time flies when you are doing something you love – that I was travelling up to the really rather lovely Todmorden, home to Asquith Hall Specialist Nursing Home.  I had been invited to deliver some sexuality, intimacy and dementia training as part of their Pride week.  I travelled up the night before and felt like a rock star when they sent a driver to pick me up the following morning.

 

I was particularly interested in the work that Asquith Hall were doing as it relates directly to the work of my Churchill Fellowship which saw me travel to Australia and USA to investigate inclusive aged care for the LGBTI+ community.  I had seen some examples of good practice on my travels and I was delighted that Asquith Hall seemed to be tackling this often overlooked issue.

 

Having an appreciation of the history, stigma, inequalities and trauma experienced by some members of the LGBTI community is essential in health and social care and I was delighted to see the rainbow welcome that awaited all visitors during Pride week at Asquith Hall.  There were banners, inflatable rainbows, Pride flags, pom poms – I was even presented with a lovely goodie bag on my departure 🙂

 

The training sessions were well attended.  It was interesting because I sensed that I was really challenging some of the preconceptions of a couple of attendees, but I was delighted to see that by the end of the training session they had shifted in their attitude a little.  It is complex, nuanced and challenging work considering the sexual, intimate experiences of people living with dementia, so I get how tough it can be to think about these things.  If I can get people to even consider it I take that as a win!

 

My ethos is a rights-based, person centred, relational approach.  My brief when originally developing the training was around challenging assumptions and offering practical solutions.  The use of ‘real-life’ case studies and a dash of humour also helps.  Another consequence of hosting this type of training is how it makes LGBTI+ staff feel safe.  On several occasions, staff members have confided that they have felt they need to keep their sexual identify a secret from other staff members and residents and that this type of training enables them to feel safer in their workplace.

 

I am delighted that 100% of attendees (even the ones who looked very doubtful when they first came in) would recommend the training, with some suggesting it should be mandatory. I am not sure how many other care homes are hosting Pride weeks, but I am hopeful that many more will.  I’m only sorry that I couldn’t attend the whole week – it looks like everyone had an amazing time.

Dr Jane Youell is a Chartered Psychologist and dementia specialist. Her research interest lies in sexuality, intimacy and dementia.  Any organisation wishing to find out more about her training and consultancy work should contact jyouellconsultancy@gmail.com

This is not what education should look like…

This is a photo of my daughter mid GSCEs.  She has been doing this every day for goodness knows how many weeks.  We have not been able to use our dining room for as long, so we are all huddled on the sofa eating dinner every night.  She works late into the night most nights.  She takes notes to bed with her.  She is often late getting ready in the morning as she skims over them one more time.  I have had to stop her from pushing herself too hard on more than one occasion.  This is not what education should look like.

She is a super tough cookie, my baby girl.  She rarely, if ever, cries.  She gets stressed but it’s a flash in the pan.  She is highly resilient – third child, had to be.  I have had to watch as the cracks begin to show in her armour.  This is not what education should look like.

I have had to find money I don’t really have to pay for maths tuition because she has been slipping through the net and got deeper and deeper out of her depth as her teachers struggle to keep on top of all the new exams and pressures.  It has worked, in a manner, she came out of her first maths exam saying it wasn’t that bad, I’ll take that as a win because eight weeks ago, she was sobbing and crying about how she was going to fail, how she was a failure, how the pressure of getting into sixth form just felt too much.  This is not what education should look like.

In a bid to understand I contacted the school.  She has been advised to seek alternative options, the message she got was ‘you’re not making the grade, not welcome here, we only want the best.’  But she is the best.  She uses language in ways that will have you crying with laughter, she cuts through facts with clarity and doesn’t stand bullshit, she can argue about literally anything, she is a critical thinker.  She has a beautiful mind.  And yet is reduced to tears and tantrums, stress and anxiety, pressure and worry.  This is not what education should look like.

Dad: two years on

My father died two years ago today.  It was a good death.  He planned it all and apart from a couple of troubled moments where he doubted he could die, he managed it in the end.  It was with great love that we held his hand and told him his body would know what to do and that this was ok.  It was with great humour that we sat with him as his breathing laboured and stopped only to start again 30 seconds later.  They don’t tell you that about the dying, but as Dad had a great sense of theatre we started to smile as he slipped off this mortal coil.

I miss him.  I’m angry with him that he went before I was ready to be the grown up.  I want to tell him I was on telly this week and that I got engaged to the clown and that I read a good book recently.  I want to tell him that my response to his death was to host death cafes and how amazing they are and that I travelled on my own to Australia and America.  I want to tell him that I played Al Martino Here in my Heart for someone in my CST group this week and that I remembered Dad singing it even though I hadn’t realised it.  I want to tell him that as it dawned on me during the CST session I had to swallow my grief as it felt like a punch in the stomach.  I want to tell him that I had a conversation about Jussi Bjorling and how amazed the person was that I knew who he was at all!

Mum and I are going out for lunch as a way of marking this day.  We will probably order the most Spanishy thing on the menu and we will raise our glasses that we have survived without your bloody moaning, your humour and your advice (which I rarely took).

This is what I read at my father’s funeral and is still true 🙂

We should not be here today.   Dad’s wishes were that he should leave his body to medical science so we were rather hoping that we could ship him off to the University of Leicester and we could raid his wine cabinet to toast the old boy privately.  However, we are deeply grateful to all of you who have joined us today to pay tribute to Dad’s life and celebrate his memory.  We are aware that there are some who are close to him who could not be here today but we feel their love and support just the same.

Dad was a wonderful, warm-hearted, funny and eccentric man.  He was also irascible, difficult and stubborn but we are only going to focus on his best bits today.  We are deeply grateful to our father for many things, our big noses, Crispin’s hair loss, our disregard for authority and rather smelly feet.

We are also very grateful to him for taking us out as children to fancy restaurants and the theatre, which in the 70’s was not a common approach to parenting in working class families.  An appreciation for food, art and culture has remained with us throughout our lives.  We both, in different ways, are life-long learners and have a thirst for knowledge and a curiosity about the world which has been heavily influenced by our father.   Crispin said I have to say that he has also inherited Dad’s dashing good looks, compassion and sense of humour.

Our father’s theatrical style of parenting combined with a wicked sense of humour meant that he often dressed up as a vampire when we were watching Hammer Horror films as children.  He thought this was incredibly funny but has resulted in neither of us being able to sleep in the dark.  Luckily, his approach to cuisine meant that no vampire real or imagined would ever be able to get close to us.

We have both inherited his over optimistic ability to ‘finish a project’.   We both horde useless objects in the hope that one day we will find a purpose for them.  Cars are a particular favourite waste of time for both of us.  We are grateful for the vision he bought of the rest of the world.  He would often work away and come back with stories of food and culture which broadened our horizons, we both, particularly Crispin, love to travel.

We would also like to acknowledge our Mum today too though.  She too has passed many qualities onto us and supported my father to pursue his many interests.  We are grateful for her constant presence.

Finally, we are incredibly thankful to have been able to sit with Dad, to hold his hand, play him music and to reassure him as he made his final curtain call.

We would now like to read a piece which we feel sums up how we would like to think about Dad.

Death Is Nothing At All
Death is nothing at all
I have only slipped away into the next room
I am I and you are you
Whatever we were to each other
That we are still
Call me by my old familiar name
Speak to me in the easy way you always used
Put no difference into your tone
Wear no forced air of solemnity or sorrow
Laugh as we always laughed
At the little jokes we always enjoyed together
Play, smile, think of me, pray for me
Let my name be ever the household word that it always was
Let it be spoken without effort
Without the ghost of a shadow in it
Life means all that it ever meant
It is the same as it ever was
There is absolute unbroken continuity
What is death but a negligible accident?
Why should I be out of mind
Because I am out of sight?
I am waiting for you for an interval
Somewhere very near
Just around the corner
All is well.
Nothing is past; nothing is lost
One brief moment and all will be as it was before
How we shall laugh at the trouble of parting when we meet again!
(Canon Henry Scott-Holland)

I’m afraid I don’t think we will meet in the afterlife (sorry Sister Hazel) as Canon Scott-Holland probably meant when he wrote that final line.  But I definitely meet Dad in my dreams, when I look at Crispin and to a lesser extent in my children.

A friend recently told me that grief initially feels like a huge rock, impossible to move.  Gradually it lessens in size until eventually it is a small pebble in your pocket, always there, never forgotten.   I think that grief is the price you pay for love and I can see that there will be lots of people who will carry a small pebble for Dad.  He would have liked that.

Thank you.

Bye Bye Boston

What a fabulous end to the week.  A very warm welcome to the Emanuel Church elder LGBTI lunch.  They very kindly facilitated a discussion about what the community lunch club meant to them.  They moaned about the food quite a lot, so it wasn’t that – I thought the chilli was nice, but I’m easily pleased.  It was the sense of community, it was a safe place to be, when they entered everyone assumed they were LGBT, which was in contrast to pretty much everywhere else they went.  It was assumed when I mentioned my partner was heading out that it was a woman and for the first time in my life I had to declare my sexuality.  This was an important understanding.  The location of the club was easily accessible, it helped that there was free parking – I think.  The members that I met today were overwhelmingly gay men with only two women present.  One woman travelled some distance just to attend this club just for the companionship.  Memory concerns were definitely present within this group.  There was a beautiful point at the end of the group where members enquired about other members who they hadn’t seen in a while and there was a kind of update.  This is a community who looks out for each other.

 

I had to say goodbye to the lovely Bob Linscott who has taken such good care of me all week and hooked me up with such great contacts.  I have a few Churchill Crowns which I can give to people as a thank you.  They are a nice commemorative coin from the Churchill Trust.  I presented Bob with a crown and he complained that he would rather have a tiara 🙂

 

I headed up to a lovely café and cake place (took all my self-control to resist the cakes) to meet with Cherri, a dementia champion.  We are definitely kindred spirits and it was great to appreciate the vibe in the USA around dementia training.  I need to send copies of my articles to her and we might even manage to meet up in the UK later in the year.  It was interesting that Cherri uses validation therapy, which influenced my early work a great deal so was nice to discuss that with her.

 

My last appointment of the day was with Sean Cahill the Director of Health Policy Research who provided me with a really great insight into what the issues were in terms of aging LGBTI community and how they were responding to that.  I’m looking forward to reading their latest report about how the landscape has changed in the first year of Trumps presidency.  My head is reeling from all the information, the love, the support and the friendships I have made here.

 

The chilly walk back to my hotel was just what I needed and there was a mental toss-up between going to the gym and enjoying the complementary wine.  Wine won.  Early night needed as I have an early start tomorrow as I head to NYC and the best boyfriend in the world.  I have a list of restaurants, bakeries, sights to see from all those I have spent time with over the last two days.  I fear the diet will go out the window…