Somewhere inside: A carer hopes her words still make an impression

I understand intellectually why Mum is the way she is, but it’s totally different to accept it emotionally,’ says Ming Ho, whose mother Glenys has dementia.

Glenys, 92, was diagnosed with mixed dementia – Alzheimer’s and vascular dementia – in 2011. Her condition has totally changed their mother–daughter relationship, leaving Ming to wonder how she can tap back into what they once had.

Warm and friendly

Glenys was born in Chorley, Lancashire to parents from north Wales and always considered herself Welsh. She was a professional classical singer who performed at concert halls, cathedrals and on BBC radio broadcasts. After getting married she became a school teacher, though continued to train others in singing.

‘She was always very warm, generous and friendly,’ says Ming. ‘She was very empathetic – almost too much. She would be the first to help someone in trouble. She was also a bit of a joker and had a great sense of humour.’

Ming, originally from Gloucestershire but now living in north London, was the only child of Glenys and her husband, Wai Kwong Ho, a nuclear physicist from Shanghai in China. Wai Kwong died in the late 1980s, when Ming was still a student.

Extreme reactions 

Ming has seen her mum’s behaviour and personality change drastically over the years. She thinks there were very early signs after Glenys lost her husband, retired and saw her daughter move away from home, all in quick succession.

‘She started having extreme emotional reactions to things,’ says Ming. ‘She became unnaturally possessive of me on occasion and felt threatened by my relationships with others.’

A neighbour died around 10 years ago, but Glenys didn’t show or seem to feel the kind of sympathy that could be expected.

‘She was strangely angry, defensive and resentful,’ says Ming. ‘The family put a note through her door to let her know the news, but she somehow saw it as an imposition. She said, “They can look after themselves!”’

Glenys would have moments of paranoia or delusion, becoming uncharacteristically antagonistic.

‘It came and went in flashpoints, so was very hard for any of us to grasp,’ says Ming.

She acknowledges how difficult it must have been for friends, especially as Glenys was yet to be diagnosed. However, Ming was still surprised and saddened that some chose to cut ties with her mother.
 
‘I can understand people being confused, but some we had known for 30 or 40 years were quite mercenary, even when I explained things,’ she says.

Crisis point

As things worsened, Ming’s attempts to call in support for both Glenys and herself were hampered by her mother, who didn’t think anything was wrong. 
 
‘She wasn’t eating or washing, and was getting into distress, but could present as normal when visited by professionals,’ says Ming. ‘She told a social worker, “What do I need a carer for?”

‘That had been my opportunity to get some help but she totally rejected it. I was dying inside.

‘I used to say she was in denial, but now I see that she was unable to recognise her condition.’

With Glenys’s needs coming first, Ming’s career went on hold. Having been a TV script editor, she had gone freelance as scriptwriter in 2000, writing for programmes such as EastEnders and Casualty.

‘I used to say Mum was in denial, but now I see that she was unable to recognise her condition,’ says Ming.

‘I never intentionally gave up work, but when Mum reached crisis point I had to stop pitching and fell out of circulation,’ she says.

‘Thankfully I am now back in business, but for years there was so much going on with Mum, I didn’t have the time or headspace. Every day there was a crisis.’
 

Agonising decision

Glenys entered a care home in Gloucestershire in September 2011 and initially seemed to settle in well.

‘It was a big upheaval so I was hugely relieved that she accepted the home and was able to thrive there,’ says Ming.

But in 2015 the manager left and the feeling of the home quickly changed.

‘There was evidently an imperative to cut costs and maximise profit,’ says Ming. ‘The staffing ratio in Mum’s unit was cut by half and the continuity went.

‘Mum was admitted into hospital with aspiration pneumonia in the midst of this trauma. The situation was very upsetting.’

After much agonising, Ming decided to move Glenys in May 2018.

‘I struggled with it, as I worried that a move could kill her. But she’s settled well and seems as content as she can be anywhere,’ she says.

Ming makes the 200-mile round trip to visit Glenys almost every week, never fully knowing what to expect.

‘That’s been one of the hardest things to accept – the massive change in Mum’s personality,’ she says.

‘She can still have cheeky moments and is relatively articulate but she’s also much more withdrawn and suspicious.’
 

Support and hope 

Having learned more about dementia from fellow carers and professionals on Twitter and Alzheimer’s Society’s online community, Talking Point, Ming has blogged about her own experiences at www.dementiajustaintsexy. blogspot.com

However, she still struggles with the feeling of losing her close connection with her mum.

‘I know not to expect her to react as a mother to me – if it happens it’s a bonus,’ she says. ‘But she sometimes  talks to me as if I’m staff or a waitress, which I find tragic as we have a lifetime’s history.

‘Sometimes she’ll say nasty things. I try and rationalise it but it still hurts. I still have a cry over it.’

Some of these themes and feelings are explored in ‘The things we never said’, the award-winning BBC Radio 4 play that Ming wrote about the relationship between a mother who has dementia and her daughter.

‘It wasn’t until Mum went into care that I stepped back and started thinking about the story I wanted to tell,’ says Ming.

‘Somewhere inside I hope she has an instinct of someone who loves her and cares about her,’ says Ming.

‘Mum’s been everything to me and I’ve been everything to her. I was the centre of her world. We’re each other’s only close family. But now she doesn’t know who I am. The play was grappling with that. What is a relationship? How can that disappear? How can you tap back into it?’

Although she knows that their relationship can never return to what it was, Ming is determined to retain any essence of what she and Glenys once had.

‘Every time I leave I say, “Remember I’m always thinking about you.” I know she won’t remember but I hope it makes an emotional impression,’ she says.

‘Somewhere inside I hope she has an instinct of someone who loves her and cares about her. I don’t want that to be broken.’