Truth will out: A carer who has fought criticism and disbelief
From the August/September 2018 issue of Dementia together magazine, we meet Liz Lane, a carer who wants to make everyone aware of frontotemporal dementia.
When a rare form of dementia caused big changes in her husband’s behaviour, Liz Lane faced a lack of understanding from health professionals, friends and her local community.
She’s now on a mission to make sure that more people know about frontotemporal dementia (FTD) and its devastating impact.
Liz, originally from Warwickshire, worked in management training and redundancy counselling before retiring to Cornwall in the late1990s.
Her husband Antony, aged 80, was managing director for two international companies. They married, both for the second time, in 1998.
‘We had an absolutely divine marriage,’ says Liz. ‘Antony was a gentle, kind and sweet person – a true English gentleman.’
They were keen sailors both at home and in the Caribbean.
‘We spent most of our time on the water.’ says Liz. ‘It was a wonderfully privileged life.’
One of the earliest changes in Antony’s behaviour came amid an unexpected family tragedy.
‘Antony was usually very caring and tactile, but I would come home late and he was fast asleep, with no empathy or concern for our situation,’ says Liz.
In 2007, not long after giving birth, Liz’s daughter Amanda was diagnosed with cancer and subsequently died. Liz was travelling between Cornwall and Rome, where Amanda had lived, to help look after the baby.
‘Antony was usually very caring and tactile, but I would come home late and he was fast asleep, with no empathy or concern for our situation,’ says Liz. ‘It was very bizarre.’
Antony became reluctant to change his plans or routines, even when Liz wanted him to take her to hospital, and his driving worsened. He also began to drink more and behave inappropriately in social situations.
‘It was a complete change in character,’ says Liz. ‘He was just slipping away.’
Liz went to her GP several times, but they wanted to hear from Antony himself, who didn’t believe that anything was wrong.
‘He was also intelligent enough to put up a façade, and told everyone he was fine,’ says Liz.
It wasn’t until he made a financial error during a business meeting that Antony acknowledged there might be a problem.
After a series of local appointments from 2009 to 2012, a neurologist declared that Antony had nothing wrong with him, even suggesting that Liz had misinterpreted or exaggerated his behaviour.
However, a medical friend told Liz that the changes in Antony’s behaviour might be explained by FTD.
Find out about frontotemporal dementia (FTD) and what causes it.
Within six weeks of them seeing a specialist team at University College Hospital in London, in early 2013, they confirmed that Antony had behavioural variant FTD. He was also diagnosed with Parkinsonism, where someone has symptoms similar to Parkinson’s disease.
Devastated but vindicated
The diagnosis was a vindication for Liz, who received judgement, criticism and even abuse over Antony’s situation from people who only associate dementia with memory or recognition problems.
She recalls, ‘A fair-weather friend we used to sail with told me, “There is nothing wrong with him – you’ve caused this because you’re so bossy and have broken his confidence.”
‘Another man in the village told me I’d ruined Antony’s life. People said, “Watch the wife, she has serious mental issues.”
‘It’s a double-edged sword. You’re devastated that your husband has been diagnosed with a terminal illness, but having had the finger pointed at me, it was actually a relief that I didn’t have a serious problem myself. There was a huge amount of self-doubt instilled on that journey.’
Liz and Antony attended appointments at University College Hospital every six months, also taking part in research at the associated UCL Dementia Research Centre. Although visits became too challenging for Antony, the team have continued to support them from afar.
‘I’m very fortunate – they’re one of the best dementia teams in the world,’ says Liz. ‘Anyone in the UK can be referred to them by their GP.’
Antony has also chosen to donate his brain to the National Brain Appeal in order to help others with FTD.
In 2016, Antony was diagnosed with peripheral neuropathy, a form of nerve damage that affects his ability to walk. But his dementia meant he had no insight about this, which led to falls.
He moved into a care home in January 2017 and is now no longer able to leave his bed.
The lack of understanding about FTD that Liz has encountered across health and social care services has been glaring.
‘GPs often don’t know about it and smaller towns rarely have a neurologist with the knowledge,’ she says.
‘Care home staff don’t always understand the different approach needed for FTD, compared to Alzheimer’s.’
A social worker also claimed that Antony had full mental capacity, even though Liz and the neurologist knew there weremany situations, involving complex decisions, where he wouldn’t.
‘There are people I had trusted who walked away when we needed them most,’ says Liz.
Liz has felt let down by the way some friends reacted to Antony’s illness.
‘There are people I had trusted who walked away when we needed them most,’ she says.
‘Their excuse was that they wanted to remember him as he was, but I think that’s an incredibly selfish attitude.
‘They don’t get it and their lack of support makes your situation worse. It’s a very lonely place to be.’
Liz helps to facilitate a Devon and Cornwall FTD support group, part of the Rare Dementia Support service overseen by the UCL Dementia Research Centre.
‘We meet every eight weeks to share personal experiences. These get-togethers are invaluable,’ she says.
‘FTD shatters your life – your social life is finished – so it’s nice just to have a normal drink with people in a pub.’
Liz also takes comfort from the tranquillity of her Cornish cottage, which she shares with her golden retriever Polly. She lives by a creek where she can see swans and curlews from her garden.
‘It’s absolutely beautiful, a little piece of heaven that keeps me sane,’ she says.
Devastated by the effects of Antony’s dementia, Liz is determined to tackle the lack of awareness that she’s experienced.
‘The whole thing is so bizarre, so confusing,’ she says. ‘People don’t know about the rarer dementias.
‘I’m going to get out there and make sure that everyone is aware.’
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