The previous post ended just as I arrived at the venue for my meeting. This post picks up the threads after the meeting was over.
My friend and I, returning from our meeting via a walk across Kensington Gardens and Hyde Park, had got ourselves sorted at a table with one reserved seat for the return journey via Newport. My phone was plugged into the charger to tether my laptop ready to answer emails and create the report about the meeting.
Pretty soon after, a pale woman in her early thirties came rushing towards us brandishing her ticket and claiming ownership of the ticketed window seat, loudly but pleasantly. She was clearly a character. My friend slid out and sat across the aisle. She flopped into her seat, plugged in her phone and produced leaflets galore and a writing pad. Someone else clearly on a mission.
I couldn’t resist finding out what was going on and she was more than happy to tell us. She’d been facilitating a Dementia Training Day for support workers. She’d been doing this kind of work for about ten years and was clearly committed to it. She was adamant that people with this problem needed to be treated with care and respect. She shared how people irritated her so much when they said ‘I am just a carer.’
‘Just a carer! I hate that phrase. What on earth are they talking about? Don’t they understand how important caring is? People should recognise how valuable a carer is so that carers don’t feel they have to almost apologise for getting paid. End of rant!’
‘On a related topic but somewhat to one side, I was at a Death Cafe last month,’ I said.
Her eyebrows shot up. ‘A what?’
I explained it was where people could talk about death and dying without being shut up or criticised and how hard it was for some of the dying to feel that they were understood and truly cared for. Death, like dementia, was a subject that was almost taboo. Speaking of it could get you quarantined. And the dying could be rendered almost invisible.
‘Just as with Alzheimer’s, even if ordinary consciousness is warped, lost or nearly lost in the dying process, there is still a person in there. They must be treated the same as anyone else, even though they do not respond or communicate.’
She nodded emphatically in agreement.
The train had not set off yet and we were already in the thick of a deep conversation. I could see my report time being swept away on these waves of thought.
A young girl slid smoothly into the seat opposite me. We all smiled. The lady with the leaflets couldn’t remain silent even though I could see she was jotting down notes on her pad.
‘You just made it in time.’
‘Been doing anything interesting?’
‘I’ve been on a two day training course for dental assistants.’ She was by far the youngest of the four of us and seemed slightly more reserved though friendly. She mostly only answered questions and seldom chipped in with her views as the journey back to Wales began. She was heading for Cardiff like the Dementia trainer.
I never found out their names but feel it would be easiest to give them invented names for this account. So, the Dementia trainer will be Alison from now on, and the Dental Assistant in the making will be Denise.
Denise helped reassure Alison that there need be no pain from injections at the dentist, but the needles, which Alison found so daunting, had to be frighteningly long. She explained this and how the pain could be avoided completely but I was too busy typing my second paragraph to register what she said. I’m afraid I’m not up to Proustian multi-channelling. If the account of his friends is anything to go by Marcel Proust could listen to an opera, talk to his friends and monitor the conversation in the neighbouring box, all at the same time. He even registered key changes in the score, not just plot lines, apparently!
Alison began describing her work to Denise, who wanted to know more. She came across as warm, compassionate and dedicated to her work. She was skilled at keeping her explanations clear and accessible. She avoided the technicalities of amyloid plaques and focused more on the nature of the memory problems and how to help people maintain a happy quality of life in spite of them. I couldn’t resist praising her positivity and dedication. It was truly admirable.
She was hesitant about one thing though. There was the possibility of participating in a research project testing a new medication. She was quite scared of doing so because of the possible side-effects creating long-term damage. Denise thought that unlikely. I wasn’t so sure, sharing that this was difficult to assess as much of the research data generated by drug companies was kept under wraps so it was impossible to determine how many people had been adversely affected.
‘Maybe I’ll do it when I’m older,’ she added, with a rueful smile. I didn’t say so, but I felt that she was contributing hugely as it was. More was not required of her.
The ticket inspector suddenly appeared — well, suddenly to us as we had been so deep in conversation we never saw him coming. Alison produced a hand of cards.
‘Which one do you want?’ she asked. ‘I never travel on trains. This is only the second time in ten years. I’ve no idea.’
‘Paddington to Cardiff looks good,’ he said. ‘I don’t need the other ones.’ He moved on down the carriage.
I had noticed the silver crucifix pendant on her necklace and decided to comment on it now.
‘It looks as though you have a spiritual angle on all this as well.’
‘Some people see me as very Christian about all this,’ she sidestepped slightly, looking a bit embarrassed.
I decided not to push the issue of her beliefs.
‘I certainly have a spiritual take on it all. As a Bahá’í I believe our soul is still intact even when our body and brain are shutting down. At that level we know how we are being treated. That’s even more reason to deal with those who are damaged in this way with dignity.’
Another idea flashed through my mind.
‘At the Death Cafe . . .’
I saw the look on Denise’s face.
‘Ah! You weren’t on the train when talked about that were you?’
She shook her head. I briefly explained again.
‘At the Death Cafe,’ I picked up the thread, ‘it was amazing to be able to discuss the whole spiritual dimension freely with everyone feeling it was OK to say what they believed.’
I looked down at my computer and the first few words of the report I had been planning to draft on the train. I began to type. I noticed that my friend across the aisle was nearly asleep. For a short while Alison seemed happy to sort her papers out and make her notes in silence.
But not for long.
I’m not sure how we got there but Alison was explaining how, at a recent training, she had seen how someone with dementia was managing to take care of herself and perform routine tasks with the help of prompts and lists. This triggered my memory of a recent TV documentary by Angela Rippon on the subject of dementia. It included a moving section in which a GP explained how she coped with her dementia with the help of a QR reader and an iPad, and by keeping all her dishes in the sink to remind her what she had eaten and drunk during the day. She was handling her problem so well she was even able to run a cognitive stimulation group for other sufferers based on Japanese research. Truly inspiring.
Even antihistamines came up as a topic as Alison shared that she might have to consider which brand to take. Amazingly I was able to share my own attempts to shed light on the topic. The evidence I’ve found suggests that anticholinergics like Piriton which cross the blood-brain barrier, trigger memory loss in some people. This may be true even for Loratadine, whereas Zirtek, which apparently doesn’t get into the brain, is safer. Alison was surprised that her own team did not seem to have this knowledge and noted it down to check it out.
I cannot help but feel that this established for me a degree of credibility so that when it later became my turn to rant I was listened to with patience and understanding.
The conversation had reverted to mortality, death, and the importance of being compassionate and helpful.
‘From my perspective as a Bahá’í, it’s really important that we all recognise that we are all members of the same human family. None of these divisions we’ve created count for anything really. Nationality, creed, race, and all the other labels we bring out are real. They’re creations of our cultures. Beneath all that we’re fundamentally the same, in body, mind and spirit. And until enough of us really believe that we’ll never solve the problems we’re facing now. The core of all positive belief systems in the end is love and wisdom, and as the being of light told someone before they were sent back to this life, that is all we can take with us when we die.’
“You had your rant before the end!’ Alison said with big grin on her face. We all laughed.
My friend roused from his slumber at this point. He seemed to have heard more than we thought and spoke of how this was true of all Faiths, including Islam, which he explained is much misunderstood at present. Both Bahá’u’lláh, the founder of the Bahá’í Faith, and Muhammad, expressed this spirit of love in their lives.
‘We can see this aspect of Muhammad’s character in the incident with an old woman. She really did not like Him. To express her contempt she used to throw garbage in His way whenever He passed by her house. One day, when He walked past her house there was no garbage thrown. This made Him check out where the old woman was. He came to know that she was sick and went to visit her offering His assistance. The old woman felt extremely humbled and ashamed of what she had done. She became convinced that Islam must be a true religion.’
As my friend spoke I tried to read the expression on Denise’s face. Was it boredom? Irritation? I couldn’t quite tell. She was looking a little pale.
My friend paused for a moment. No one spoke. He continued, ‘Bahá’u’lláh showed the same spirit. He was being taken to prison. As He was approaching the dungeon, an old woman emerged from the crowd with a stone in her hand. She was eager to throw it in the face of Bahá’u’lláh. Her eyes glowed with determination and fanaticism. Her whole frame shook with rage as she stepped forward and raised her hand to hurl her missile at Him. “I adjure you,” she pleaded, as she ran to overtake His captors, “give me a chance to fling my stone in his face!” Bahá’u’lláh said, “Suffer not this woman to be disappointed. Deny her not what she regards as a meritorious act in the sight of God.”’
Just then Denise almost fell off her seat in her sleep and had to be steadied by Alison. I put this down to her tiredness at the end of her demanding training rather than to her lack of interest in the topic. Not that I’m biased in anyway.
With perfect timing the train approached Newport where my friend and I had to get off. As I did so Alison spoke of how a blog would be a great way of capturing what we had all been talking about. I barely had time to scribble the name of this blog on her pad before I sped to the exit just in time to descend onto the platform as the train came to a complete halt.
My friend, who lived close by, helped me find the bus stop I needed. We said our goodbyes. As I stood waiting I noticed that a tanned, slim, elderly man in a dark suit carrying a suitcase was looking slightly puzzled. We started chatting. He’d been to London to watch the cricket at Lords.
I was able to help him clarify which bus we needed and he was grateful as he had not understood the mumbling rail staff’s hurried explanation that the first bus was a stopping service and the 18.00 was the one that went direct to Hereford.
Once on the bus our chat continued. It roamed across many topics: left-wing politics including socialism, pacifism through Buddhism to the Bahá’í Faith, republicanism, as well as our experiences of university. To go into more detail would tax any reader’s patience.
I definitely felt at the end of these two journeys in and out of London that my declared delight in deep conversations was being put to the test. I think it passed because, even after such an early start and all the constant talking throughout the day both on the trains and in the meeting, I was uplifted rather than exhausted. I am grateful for having been able to spend such fascinating spans of time with such interesting people.