Speaking from the Heart event…..

After the wonderfully exciting day on Tuesday, yesterday was an yet another exciting day in London…..I’m so very lucky………a long blog but a lovely one for me to remember…….

Me and Sarah had been invited to take part of an event organised by Innovations in Dementia – Women and Dementia. Many of my female playmates, some along with daughters were invited to be in conversation with Radio 4’s Woman’s Hour presenter Jane Garvey – Speaking from the Heart.

Most people had travelled the day before but me and Sarah had a silly o’clock start on the first train of the day. It meant that Sarah picked me up instead of a taxi! I’ve had a cold for days and keep having to dose myself up to get through the days and today was no different……….

The train was on time and we trundled along, this time taking a piccie of the sky from the opposite side of the carriage….

The event was held at the lovely venue of St Marys House, a nice trundle from Kings Cross. As we got closer to London, the sun started to shine and the gloom of the morning disappeared. We ambled along the main Euston Road, only for me to realise my ear plugs were in my coat, and I’d come coatless today 🙄

Everyone started to arrive and the room started to fill with laughter and pure joy……
Hugs were in abundance, new friends made and old friends reacquainted……..that feeling of instant unconditional friendship hugging the room….

Jane Garvey arrived and more hugs and hellos

And I introduced her to Agnes and everyone who came by. I knew we were going to have a wonderful day today; you could feel the electric atmosphere………

Rachael started off the event……a momentous day as we were all women discussing women’s issues and dementia . We’re hear to speak from the heart…….we had a film maker and the wonderful photographer, Jo Hanley, who took my photo that’s inside the cover of my book.

Philly gave a bit of background…….why are we all here today? She took us back 5 years to the WOW! Festival at York University which recognised how dementia disproportionally affects women. That was the first time I met Agnes and the story is in my book. The following year 2 major reports were published – “Woman and dementia – a marginalised majority” and one by ADI. Both had findings about the high number of woman effected by dementia…..living with, caring for and working in the care industry.

Not a huge amount has changed since then………

I then read out the piece from my book where I met Agnes for the first time….at the WOW Fwstival…

‘ The next speaker is announced……….It’s Agnes Houston…..By the time she leaves the stage, I’m clapping louder and more furiously than anyone else in the room; she has inspired me’

Frances then read a message from Rachel Niblock who couldn’t be with us….Frances called Rachel ‘Nibbles’ which is lovely…….she (Frances not Rachel!)told us the story of her need to find Tena Ladies in Norway where she spoke no Norwegian and the chemist spoke no English. It was through much delicate gesticulating that she got what she wanted….very funny story but made a point that everything was up for discussion today……

Dory and Agnes spoke of losing their identity when diagnosed. Shelagh said, “I’m bloody sick of dementia”…..the more you campaign, the more it consumes you. Chris spoke of her experience of diagnosis, how she told the consultant there was something wrong inside her head and the consultant said, “I’m here for your physical health, not your mental health’….😢🙈

Whereas Dorothy, from Northern Ireland told of the opposite experience, of how the Consultant spent a long time explaining her diagnosis and took time to explain the scans of her brain. However he did say:

“Put your affairs in order” – she replied ‘I’ve never had an affair” 😂🤣

Stresses again the post code lottery that exists………

We then spoke in our groups around tables to find the key topics we’d be discussing with Jane this afternoon. Philly was our tables leader……

We spoke of how being a woman can be exacerbated with dementia in tow. Working in a male dominated area or where managers are male can make it even harder to be respected.

Heather brought up the issue of fear and how the fear is derived from societies attitude to the word dementia immediately meaning the end stages. The media have a responsibility to show all stages…..not just stories of care homes, people getting lost.

My Sarah said, Maybe we, in the future, will have our films shown of us now as well as in later stages.. she also said, women tend to do more ‘shuffling’, more compromising, more negotiating when the family dynamics change ……

Each table then gave feedback from our conversations before lunch…..

After lunch and a stretch of legs we all got back together for the discussion with Jane…

Jane arrived back from shopping from recording her podcast and we started off by me going through the top ideas for discussion. We started off at the bottom with Continence. Various issues were brought up around, losing the signal to go to the loo, closure of public loos, having continence pads that are more feminine as some are enormous; also forgetting to change them. It can make people feel reluctant to go out and are self conscious.

Jane said, the slogan that springs to mind to get the conversation going is:

“It could be you”

We spoke of the role of mother being renegotiated. Dementia strips away so much from you but stripping away the role of mother hits hard. I’m lucky in so far as me and my daughters were able to talk about it. Some families fail to talk and suddenly a mum with dementia is stripped of the most precious role because those around her believe she now needs to be cared for.

The subject of not wanting daughters or partners to be a carer was spoken about by many. Even the government wants family to be carers, because it’s cheaper, but as someone said, ‘I want my daughter back’…..

Many people don’t know how to talk, afraid of hurting one another. Maybe professionals could help start those sensitive conversation, but then not all professionals are comfortable doing that.

Jane finished by saying we were the funniest group she’d spoken. It was lovely to have her join us…..the first thing she heard when she arrived in the building was the laughter from our room……the exact opposite of what someone might expect from seeing the title of our day….Women and Dementia

Dorothy recited one of her poems – beautiful…….

We finally spoke of what’s next……a short film and a little longer film will be made from the footage of the day. Much of the stuff could be used for so many things and Jane agreed to be our celebrity superstar ……….wonderful…I was exhausted, my head was banging…but …..oh what a wonderful day.

A group piccie ended the day

……before heading back to Kings Cross to find all trains cancelled north of Peterborough…..so it was going to be a long evening trundle home……..the not so scenic route…….🙈