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.

Asquith 2

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…

Flo studying

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…

Hearts, chocolates and the worst kidnap attempt ever…

This has been the best day ever.  I woke up to several messages sending me notice of an Independent Age study about sexuality and intimacy in the over 65s.  I had 30 minutes to muster up a blog post for the most wonderful Jason Day, my PR guru.  Soooo pleased that I managed to just sit down and write something, managed to set up some more appointments in New York, then it was off out to make my first appointment.

Enjoyed an interesting conversation with Dale Mitchell, the CEO of ETHOS.  ETHOS is a ‘mainstream’ care provider who support people in their own homes.  They have been instrumental in forming the LGBT aging project and was really great the hear Dale’s perspective.  I am going to have to really take some time out just to consider all the different perspectives I’m hearing.

I then navigate my way back to the hotel to write up some notes and generally process stuff before heading out on the bus/train to the Hebrew Rehabilitation Centre where I met the lovely Rabbi Sara.  This centre is enormous by UK standards.  Sara and her team are working at rolling out LGBT sensitive care across the whole of their service.  I can’t wait to find out how this work progresses and have made some great contacts here.

Hebrew rehab

From here it was a bus ride back to join an elders of colour community dinner.  I arrived before Bob but was made to feel so welcome that it really didn’t matter.  This is a monthly dinner which is hosted by Whittier Street Health Centre and it is fab.  It has such a great vibe and the room was all decked out for Valentines.

 

I met such lovely people who were so interested and supportive of the Fellowship it was just great.  Bob left before me as I was so busy chatting to people.  I have everyone’s details and promises of keeping in touch.  After dinner of salad, pulled chicken and potatoes, there was news of an upcoming theatre trip, a talk by a new clinician working within the clinic – who handed out Valentines candy, my GP never does that….  We were then treated to a seminar about the importance of humour in older age.  I was lucky enough to have a key ring under my valentine’s card which meant I won a bag of goodies 🙂

Goody bag of loveliness

I was introduced to such an great group of people, it was just a joy to have so many interesting conversations, especially as I am so far away from my loved ones on Valentines.  I met a wonderful woman called Eugenia who had only recently retired and I was told was such a powerful advocate for better services in the area.  I love meeting women who change the world.  I feel like I have met a legend.

I was slightly concerned because I had to make my way back on the train and it was getting later and later.  I feel totally safe here but three women offered me a lift to the T station and I was grateful.  I left the dinner feeling the love.

We walked to the car park together and I was put in pride of place in the front.  Then the hilarity began.  If one of my kids got into a car with a bunch of strangers I would be furious with them!  Anyway, we started to drive out of the carpark but the ticket didn’t work.  Her wife couldn’t get out of the back because the door lock was malfunctioning so there was all sorts of silliness trying to get people in and out of the car.  Luckily, someone pulled up behind us who had a fob for the barrier and we were out.  We were then heading off towards the T when it was decided that they would just chauffer me back to my hotel.  All three women had a different idea of how best to navigate to my hotel and I did comment that this might be the most inept kidnapping attempt ever.  So much fun and laughter in that car this evening.  I was safely dropped off right to the door and I very much hope to meet these wonderful women again someday.

I arrived back to my room still with a big grin on my face from such a wonderful evening and was welcomed back with this by the world’s friendliest hotel:

Hotel chocs

 

Lost gloves and heartache

I’m of an age where gloves feature large in my life as an essential accessory.  I guess this happened when I was about 43 before that I was so hip not even weather could get to me.  Now I’d rather be comfy, which mostly means warm.

 

I have gloves for different occasions – there are the emergency gloves I had to buy when I was Christmas shopping in Camden with the best boyfriend in the world, then there are my driving gloves that live in my car, knitted silver yarn with yellow (my fave colour) which have rainbows bought for me by Sheryl, the beautiful long length black leather ones which make me look like a dominatrix or that I’m about to handle something corrosive. Then there are my everyday gloves.  Dark blue faux leather which are scuffed and worn.  When it rains and they get wet the dye comes off on your hands and you spend the day explaining your frozen looking hands to people.  These are now also my ‘Boston’ gloves.

 

I woke up this morning and couldn’t find them.  I have returned to my hotel in between appointments just to look for them.  I lose things all.the.time.  My brain just doesn’t retain information like where I last had a thing.  I end up replacing everyday items with amazing regularity.  But these worn out hand dying gloves cannot be replaced.  My Dad bought them for me and now he’s dead so they have been elevated to my most precious things.

 

On this Valentine’s Day, text your loved ones – including parents, grandparents, children, chosen family, whoever makes your heart bigger – because when they are gone it will hurt you in ways you cannot even imagine.

 

I found the gloves.  I had chucked them in a shopping bag with some souvenirs so everything is ok again.  Now go, tell those you love that you love them xx

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