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Husband of Wren raises Advanced Dementia awareness

Below is an excerpt from Daily Mail Online. Gill is well known to lots of Wrens, and her husband Dom has released this heartbreaking interview with the hope of raising awareness.

The husband of a mother-of-two diagnosed with advanced dementia at just 52 has shared heartbreaking before and after pictures of his wife four years on.

Gill Cardall, 56, was diagnosed with a form of dementia called progressive non-fluent aphasia in December 2015. 

Since then her husband Dominic, 55, and their daughters Emily, 30, and Georgia, 26,  have had to watch her lose the ability to walk, talk and eat. 

Tragically, when the couple renewed their wedding vows to celebrate their 30th wedding anniversary in 2016, Mrs Cardall found she was unable to say anything.

The former Women’s Royal Navy worker now requires 24-hour care, is unable to eat solid food and confined to a wheelchair.

With his wife only able to communicate by drawing ‘squiggles’, Mr Cardall wants to show dementia can ‘happen to anyone’ and how it has ‘erased’ the woman his wife used to be. 

‘She always thought about others, never missed anyone’s birthday and loved to be the centre of attention. She was a very popular lady.

‘[Now], she has become a frailer version of herself. It’s as if she is slowly fading in every aspect – physically, mentally and just in who she is. It’s like she’s being erased by [dementia].

‘I’d never seen the first photograph of Gill before – it was sent to me by one of her friends who was down at a Women’s Royal Naval Service reunion this weekend.

‘It knocked me sideways really. I got quite upset. The photograph was the last time Gill went [to the reunion] four years ago. That’s what hit me. I knew how much it meant to her.

Gill at Mill Rythe Wrens Reunion 2015

‘I thought I need to share the pictures to raise awareness and give people a kick up the backside. [Dementia] can happen to anyone.

What is young onset dementia? 

Dementia is considered ‘young onset’ when it affects people under 65 years of age. 

It is also referred to as ‘early onset’ or ‘working age’ dementia. 

However this is an arbitary age distinction which is becoming less relevant as increasingly services are realigned to focus on the person and the impact of the condition, not the age.

Dementia is a degeneration of the brain that causes a progressive decline in people’s ability to think, reason, communicate and remember. 

Their personality, behaviour and mood can also be affected. Everyone’s experience of dementia is unique and the progression of the condition varies. Some symptoms are more likely to occur with certain types of dementia.

Dementias that affect younger people can be rare and difficult to recognise. People can also be very reluctant to accept there is anything wrong when they are otherwise fit and well, and they may put off visiting their doctor.

Signs and symptoms:

Memory loss that disrupts daily life

Challenges in planning or solving problems

Difficulty in completing tasks at home, work or leisure

Confusion with time or place

Trouble understanding visual images or spatial relationships

New problems with words in speaking or writing

Misplacing things and losing the ability to retrace steps

Decreased or poor judgement

Withdrawal from work or social activities

Changes in mood and personality 

Source: Young Dementia UK 

‘Gill now needs 24-hour care, including her personal care and feeding. She has to have pureed food because of swallowing and choking issues.

‘Her fluids are all thickened to make them like wallpaper paste. She’s also losing a lot of weight. We can’t keep the weight on her because of her eating issues.’

Gill and Dominic married in 1986 while they both worked for the Royal Navy in Plymouth, before leaving two years later to start a family.

They have two daughters, Emily, 30, and Georgia, 26, who now help with their mother’s care.

Both girls still lived at home when their mother first became ill, and they noticed her starting to struggle with her speech.

Mr Cardall said: ‘The first sign that anything was wrong was Gill started to have speech problems.

‘At first we didn’t know what it was. She’d say the wrong word in a sentence or get a word mixed up.

‘It progressed over the next couple of months where she was having real problems with her speech, then her work contacted me to say she was having difficulties.

‘We saw the GP and what was flagging it up for me was Gill’s mum had Alzheimer’s and her eldest sister, Anne, had dementia.

‘Gill’s condition is a type of frontal temporal dementia. It affects the speech element of the brain. She’d get words mixed up or couldn’t find the right word.

‘For example, she asked me to ‘get her handbag out of the carton’. She didn’t realise she wasn’t saying car.

‘That was one of the things I realised she was adamant about. It wasn’t a slip of the tongue.

‘We always called the TV remote control the ‘zapper’. But she would say ‘can you pass me, that tele-pointer thing’.

‘She’d say ‘I’d like a cup of hot water with a bag in it’, rather than a cup of tea.

‘Her brain was trying to work things out but getting them wrong, or mixed up.’

Mrs Cardall’s family had a history of dementia and Alzheimer’s, with her husband admitting he feared from the beginning it was his wife’s fate.

In the last 18 months, an occupation therapist has helped the family adapt their home for Mrs Cardall, who now sleeps in their old dining room.

Her husband added: ‘We went to see the specialist two years ago. He said at the point she was in the advanced stages and that things would get progressively worse, and they have.

‘Gill is in a wheelchair full time now. Quite quickly she had problems with working out how to get in and out of a chair.

‘Trying to sit down was terrifying for her. She couldn’t work it out. That progressed to walking and stepping downstairs.

‘We’d manage to get her down the stairs and she’d spend 20 minutes trying to get off the bottom steps.

‘She couldn’t move her right leg and would shuffle along.

‘We borrowed a wheeled walking frame with a seat which she used for a while, but then quite quickly within a couple of months she couldn’t coordinate that.

Mr Cardall is urging people ‘to push’ for a diagnosis if they notice something isn’t right.

Although he finds comfort in his family, he admits there is little support out there for victims of early-onset dementia.

He said: ‘If you think there’s a change in your speech or personality, get to the doctor’s straight away. People need to push.

‘In groups I’m in [online], so many people have said their loved ones were diagnosed with depression or anxiety before being diagnosed with a form of dementia.

‘There’s a lot of misdiagnosis – especially with the rarer forms of dementia. I found a lot of information on the Alzheimer’s UK website.

‘I know they say you shouldn’t self diagnose things, but the symptoms we had were absolutely spot on.

‘The other really good help, because of Gill’s age, was YoungDementia UK, because there’s hardly anything out there for people with young onset dementia.

‘Everything is focused towards older people and this is why I want to raise awareness.

‘The groups that are held by charities are all sing-along groups or coffee mornings and focused on older people.

‘Gill loved music but she didn’t like Vera Lynn, she wanted to listen to Rick Astley. There’s a hole in the whole system.’

Gill with her family