A man has revealed his heartbreaking ordeal after his wife’s worrying symptoms – which he thought were due to the menopause – was a cruel ‘soul-snatching’ condition.
When John Manitara met Gillian, he was instantly smitten.
He fell in love with her bubbly personality, heart of gold and passion for enjoying life to the max.
But then, suddenly, all of that was taken away – and the person he once knew became somebody he no longer recognised.
Now, he and their two kids, Andrew, 32 and Anna, 26, are grieving the loss of the 62-year-old; even though she’s still alive.
“It’s like waking up to a living nightmare each day,” the founder and trustee of a community interest company and a charity, from Essex, told Need To Know.
“Her love is there, but everything else feels lost.
“I wish I could do a body swap and take her place, rather than watching her suffer so much.
“It’s a living bereavement and I dread a future without her.”
The former receptionist for French Connection UK started to act out-of-character in late 2022.
She began experiencing falls and displayed signs of irrational, as well as impulsive, behaviour, such as disappearing to purchase something without informing John while waiting for a train and almost falling prey to phone scammers.
John, 62, thought it could be the menopause, until May 2023 when she suffered a car crash with no other car involved; and just appeared dazed.
He said: “Her reaction was low key and almost nonchalant.
“It was very unlike her.
“She seemed so oblivious and like a lost soul.”
In autumn 2023, Gillian was initially diagnosed with the onset of dementia, though this was corrected to progressive supranuclear palsy (PSP) as her condition rapidly declined in early 2024.
The neurological disorder is caused by a build-up of a certain protein, tau, which damages brain cells, causing symptoms such as balance issues, cognitive impairment and movement difficulties.
From the outside, it can appear very similar to Parkinson’s disease, though this worsens at a faster pace and has no cure.
John said: “Almost overnight, she became unfit to work and required supervision for peace of mind.
“She needed help doing everyday things, such as cooking, washing and cleaning.
“At one point, Gillian left the taps running and the gas on, and I couldn’t relax in case something else dangerous happened.
“Eventually, she used to fall when getting up in the night and couldn’t bathe herself, nor dress properly like before.
“I went from being her husband to becoming her carer.
“It was devastating.”
It’s estimated, as there’s no cure, that those with PSP only live for around six years from the onset of symptoms.
Now, although they receive 24/7 support, it hasn’t been an easy battle.
He said: “I was at the end of my tether when we finally received the support required.
“We have had to fight every step of the way to get the right support and most of it has come much later than expected.
“Time isn’t something we’ve got.
“It’s been an emotional rollercoaster.
“Our children miss her motherly advice, phone calls and everything that a mum does to support her children.
“Words cannot convey the heartache and pain we feel.
“I miss hearing her lovely voice and chatting about everyday things.
“I feel I have lost my partner and soulmate.
“Even looking into her beautiful blue eyes, which barely open these days.
“I miss absolutely everything about her.”
With both their children getting married – with Andrew’s wedding this year and Anna’s next year – it’s a stark reminder of their reality.
He said: “Gillian will be attending our son’s wedding, but this sadly won’t be the case for our daughter’s.
“It’s unlikely she will be around then.
“We managed to take her wedding dress shopping to help Anna find the right one.
“She gave a thumbs up and we all cried.
“It was heartbreaking.”
Anna said: “One of the hardest parts is grieving the mother-daughter bond we used to have.
“All the little moments you never think twice about until they are taken away.
“Sometimes I find myself listening to old voice mails or reading through old text messages just to feel close to her again.
“Every time I see her, all I want is to wake her up from this cruel illness.”
John and Gillian had plans to grow old together and retire somewhere in the sun.
But now, this won’t ever happen.
He added: “Her mobility is minimal and her food needs to be cut into tiny pieces or processed to avoid choking, as well as needing to be fed.
“She is totally dependent 24/7.
“She is almost in a vegetative state – but still responds through smiling even though her eyes are closed.
“I feel lost and empty, but I am determined to raise awareness, despite it being too late for my Gilly.
“Unfortunately, time is something we no longer have together.
“I just want my wife to be as comfortable as possible for the remaining moments we have.
“Life can be very cruel, but our love is eternal.”
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