Blog

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.

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

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.

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…

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.

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 🙂

I was introduced to such an interesting 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 just 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 get 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:

Equally busy day booked in tomorrow. Cannot wait.  I ❤ Boston!