A young dad has told of his heartache after his wife was diagnosed with dementia aged just 35 – leaving him no choice but to let her live in a care home.
Barbara Bamford was only diagnosed with the condition six months ago but already she’s struggling to talk to her beloved daughters Chloe, 14, and Sophie, 12.
With hindsight, devoted husband Jonathan, 36, said he noticed subtle changes in her personality back in 2017.
The school cook forgot what she’d bought at the shops, he’d hear her say ‘love you’ when saying goodbye to the postman – like she did kids – and was forgetting simple facts.
But he was still floored when she was diagnosed with frontotemporal dementia in April 2019.
Barbara’s condition has rapidly declined over the past six months and she now lives permanently in a dementia specialist residential care home.
She struggles to talk to her own children and touchingly one of the last thing she remembers is her husband’s pet name.
Jon, from Romsey, Hampshire, said: “It’s been really tough on the whole family, and I still can’t get my head around on what’s happened.
“We go see Barb two or three times a week, but it’s really hard, and the kids struggle – they just want their old mum back.
“Barb still remembers my nickname ‘Bam Bam’ and calls out to me whenever we arrive, but other than that, she can’t really talk to us.
“I think she knows who we are in that she knows we’re family and that we love her, but beyond that, it’s difficult to say what she actually remembers about us.”
Binman Jon met Barbara back in 2003 after mutual friends introduced him to the cook and he quickly fell for her fiery and fiesty personality.
Jon saw that Barbara was ‘someone special, she just didn’t know it’ and it wasn’t long before the happy couple welcomed their daughter Chloe in 2005.
Daughter Sophie was born two years later in 2007 and the proud parents tied the knot in 2008.
Jon and Barbara settled into married life with their children and life was good for the family of four for the next decade.
It wasn’t until 2017 when Barbara started to act out of character and seemed to be forgetting things that Jon began to worry about his wife.
Jon said: “Barb grew distant from us, taking herself to bed a lot more than normal and was less interested in going out as a family.
“She’d suffered from depression for as long I’ve known her, but suddenly it got a lot worse very quickly and although the doctors tried her on more tablets, they didn’t work.
“Barb doesn’t drink alcohol, but our neighbour actually asked me if she had started drinking because they’d noticed she was slurring her words a lot when they spoke.
“I remember one day when Barb went to the shop and I’d given her £20 to buy a newspaper and some bacon but when she came back, she only gave me £6 change.
“I asked her about it as she should have had a lot more change, but she was adamant that’s all they’d given her, so I went back up the shop to ask why they’d shortchanged my wife.
“The shop assistant showed me that Barb had bought a bottle of my favourite wine, and when I went home to find the bottle in the fridge and asked her, she said she had forgotten that she’d bought it.
“I thought something isn’t right here, and then I noticed that whenever random people visited the house like the postman or someone, she’d say ‘love you’ when they left.
“I asked her why she was saying that to strangers, and she’d just say ‘oh sorry’ and couldn’t explain why, and I just knew then we needed to get her to a doctor.”
After repeatedly being sent away from doctors with different tablets for depression, that didn’t seem to do anything, Barbara was finally referred for an assessment by her GP in May 2018.
During her assessment at The Priory Hospital Southampton on 9 July 2018, Barbara was asked a series of everyday knowledge questions, such as naming the current prime minister.
Barbara gave the wrong answer to every question she was asked, and the doctor suggested she may have Frontal Lobe Syndrome.
Frontal Lobe Syndrome is a broad term used to describe the damage of higher functioning processes of the brain, with loved ones often being the first to notice symptoms of memory loss and diminished attention span or motivation to socialise.
Barbara underwent an MRI scan on 20 July 2018 to check for a brain tumour which came back clear and the young mum was referred to a neurology specialist in August 2018.
With Barbara’s health declining over the months, the sudden changes in her personality and the stress of searching for answers for what was happening started to take it’s toll on the family.
Jon said: “In June 2018, I was signed off work for three months due to stress and depression, and the next month, I sold my car to pay for private assessments for Barb.
“I was just finding everything too much at that point and couldn’t handle juggling a job and caring for Barb at the same time.
“She started struggling with everyday things a lot more like cooking dinner, and she just seemed to be lost but couldn’t explain why and I didn’t know why either which was upsetting.
“Barb wouldn’t ask questions about our day like she used to which came across as if she didn’t care but I knew there was something wrong, I just didn’t expect it to be this.
“Me and the girls were finding it very difficult to cope with her at home, and so Barb moved into her mum’s flat in September 2018 as she needed to have someone who could keep an eye on her for most of the day.”
Meeting with consultant neurologist Dr Kipps on 26 September 2018, Jon was in disbelief when Barbara’s condition was considered to be ‘nothing major’ as she appeared to be ‘normal’ during her appointment.
Concerned, Jon insisted on more thorough testing and Barbara was sent for a brain perfusion imaging SPECT scan in October 2018.
This scan is a type of brain test that uses nuclear imaging to see how the blood flows to the brain and can provide information on how the brain is functioning.
The SPECT scan showed that there were significant differences at the front of the brain to that of a healthy brain for a woman of Barbara’s age.
Jon said: “Hearing the doctor say that he didn’t think there was anything majorly wrong with Barb’s condition really shocked me.
“He said that Barb was walking fine and that she looked fine and normal, but how could he really assess that in such a short amount of time with her?
“It’s me and the children who are at home with her and can see the changes in Barb, so I knew there was something wrong with my wife.
“I pushed for them to do a SPECT scan as I wasn’t happy with what the doctor had said, and I’m glad I did because it showed there were changes to Barb’s brain.
“After the SPECT scan confirmed my suspicions, I started having counselling sessions funded by Test Valley Borough Council.
“This was to help me cope with all the changes going on, and help me deal with the fact that I had effectively become a single dad.”
Following a series of memory and concentration tests in November 2018, doctors informed Jon that they suspected Barbara may be suffering from a form of dementia.
She underwent a lumbar puncture to rule out any other possible causes, and when the results came back as clear, Barbara was officially diagnosed with frontotemporal dementia.
Frontotemporal dementia is an uncommon type of dementia that mainly affects the front and sides of the brain and causes problems with behaviour and language.
Like other types of dementia, frontotemporal dementia tends to develop slowly and get gradually worse over the years, and Barbara’s health has declined since she first visited her doctor back in 2017.
The family’s fight for a diagnosis after Barbara’s symptoms were dismissed repeatedly because of her age has taken away precious time for them together.
Jon said: “My girls and I feel like if we’d been listened to in the first place, then we could have done so much more before Barb’s condition deteriorated this far.
“I know it wouldn’t change how it is now, but we could have planned more for the future if we’d had more time knowing dementia was the cause of Barb’s symptoms.
“Me and Barb spoke years ago about how if one of us got ill, then we would write letters to the girls so if they became upset as time went on with the illness then we could give them the letters.
“That was taken away from me as I was fighting so much to find out and to be heard, and Barb’s illness took hold so fast that there was no way Barb could do letters or have a conversation with the girls about it.”
Jon wanted to continue to care for Barbara with the help of her mum at home, but as her condition has worsened over the years, it has become increasingly difficult.
On 17 August 2019, Barbara suffered a fall where she broke her ankle and her shin in two places, and she was admitted to Southampton General Hospital.
Barbara required around the clock supervision, and Jon and Barbara’s mum made the difficult decision to move Barbara to a dementia specialist residential care home in September 2019.
Dementia mostly affects people over the age of 65, but frontotemporal dementia tends to start at a younger age with most cases diagnosed in people aged 45-65.
With Barbara only being age 35, she is one of the youngest residents at the dementia specialist residential care home where she now permanently lives with frequent visits from her family.
Music is known to be a powerful way of connecting with sufferers of dementia as it accesses areas of the brain that are untouched by the condition, and Jon often plays UB40 and Michael Jackson to Barbara when visiting her.
Jon said: “We see Barb two to three times a week, but we all miss her every single day and she will always be a massive part of our family, that will never change.
“My relationship with Barb has changed dramatically over the last two and a half years – I’m still her husband, and always will be, but it’s in a different context now.
“With me, it seems Barb recognises me by sight still – she gets all excited, and she calls me by my nickname ‘Bam Bam’ which she never used to call me herself but that seems to be what has stuck in her mind.
“I still care for her and love her, but it can’t be how it used to be.
“Even though it’s different now, Barb will always have a place in my heart and that will never stop.
“If I had one wish, it would be that the girls could have their mum back.
“It does seem like she knows who the girls are, but it can take a few minutes for it to sink in with her – she does say their names but it’s very mumbled most of the time.
“I do tell Barb every time that we see her what the girls names are, how old they are and that they are her daughters.
“Sometimes she tries to say their names, and other times she may stare and not say anything, but she does seem happy when we are all there with her.
“She used to get very emotional when we were there, but they’ve given her some medication to help her manage her emotions better, and she seems happy as Larry in there now.
“Barb has always loved music, and if you put on some UB40 or Michael Jackson, she’ll start wriggling around with a big smile on her face.
“The staff at the residential care home always say she’s such a fun character, which is lovely to hear, but they don’t know the Barb that we used to know and miss every day.”