Sunday Mirror (Northern Ireland)
Mum with dementia aged 35
HEARTACHE AS LOVING WIFE FORCED INTO HOME
BARBARA Bamford beams beside her husband and girls in a joyous picture which hides a painful truth.
For Barbara barely remembers them. She is a victim of an unforgiving form of dementia that has landed her in a care home at the age of just 35.
In an unbearably sad tale, her devoted husband Jon today reveals the family’s 18-month battle to find out what was wrong with Barbara – and their ongoing agony that she won’t get better.
Barbara, one of Britain’s youngest residents in full-time care, is flanked by daughters Chloe and Sophie. But she struggles to communicate with them.
Chloe, 14, says: “We just want our mum back, we miss her so much.”
Sophie, 12, adds: “We keep thinking we’ll get a call saying that everything will be okay and that the doctors got it wrong, but the call never comes.”
Barbara was diagnosed in April with frontotemporal dementia and has been in care since September.
It has been a heartbreaking journey which pushed the family to the limits.
Jon, 36 – who sold his car to pay for private health consultations – visits Barbara two or three times a week.
Touchingly, she can still recall his nickname – Bam Bam. Jon, from Romsey, Hants, says: “Barb calls out to me when we arrive. She gets all excited and ‘Bam Bam’ seems to be what has stuck in her mind. But other than that, she can’t really talk to us.
STRUGGLE
“It’s really hard and the kids struggle. I think she knows we’re family and that we love her, but it’s difficult to say what she actually remembers about us.
“I tell Barb every time 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.
“If I had one wish, it would be that the girls could have their mum back.
“We miss her every single day and she will always be a massive part of our family. I’m still her husband and always will be, but it’s in a different context now.
“I still care for her and love her. Barb will always have a place in my heart.”
Jon has been told Barbara could live for just two to three years – or as long as eight. It has been terribly hard to take in and such a contrast to the days when they got together back in 2003.
Jon says he fell for Barbara’s fiery and feisty personality, saying she was “someone special – she just didn’t know it”.
Chloe was born in 2005, Sophie arrived two years later and the couple wed in 2008. Life was blissful for a decade.
But in 2017 Barbara started to act out of character. Jon goes on: “Barb grew distant from us, taking herself to bed and was less interested in going out as a family. She’d suffered depression but it got worse very quickly. Barb doesn’t drink alcohol, but our neighbour actually asked me if she had started because they’d noticed her slurring her words.
“One day Barb went to the shop with £20 to buy a paper and bacon but came back with only £6. I went back to ask why they’d short-changed my wife. The assistant showed me that Barb had bought a bottle of my favourite wine. I went home to find the bottle in the fridge and she said she had forgotten she’d bought it.
“I thought something isn’t right here. Then I noticed that whenever random people visited the house, like the postman, 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. I knew then we needed to get her to a doctor.”
A variety of tablets was prescribed during a string of GP visits, but made no difference. In May 2018, Barbara went for a private consultation and assessment at The Priory Hospital Southampton. She was unable to answer basic questions – even naming the Prime Minister.
The doctor suggested she may have brain damage, but an MRI scan in July last year was clear. Next up was a referral to a neurology specialist the following
month. At the time, Jon was signed off with stress. He sold his car to pay for private treatment, fearing the NHS was too quick to dismiss Barbara’s condition because of her age.
He says: “I did make sacrifices and I was fully prepared to do what I had to in order to pay for any scans Barbara needed. I was desperate for answers.”
In September 2018 Barbara moved in with her mum, for 24-hour care.
Another consultation that month brought no further progress – ironically, Barbara was on good form that day and Jon was unhappy that she was dismissed as “being normal”.
He insisted on more tests and in October last year Barbara was sent for a brain perfusion SPECT scan.
Nuclear imaging revealed significant differences at the front of the brain to that of a healthy woman of Barbara’s age. Jon says: “I knew there was something wrong. I pushed for a SPECT scan as I wasn’t happy with what the earlier doctor had said.”
More tests followed before frontotemporal dementia was confirmed.
LETTERS
It causes behaviour and language problems, develops slowly and gradually worsens.
Jon began counselling to help cope and desperately wanted to continue caring for Barbara with the help of her mum. But in August she fell and broke her ankle and shin. Needing constant supervision, the heartrending decision was made to move her into care.
Jon is bitter it took so long to get the diagnosis. He and Barbara had said that if either fell ill they would write comforting letters to their girls.
He says: “My girls and I feel like if we’d been listened to in the first place, we could have done so much more before Barb’s condition deteriorated.
“I know it wouldn’t change how it is now, but we could have planned more. We spoke years ago about writing 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 she could write letters or have a conversation with the girls about it.”
While losing Barbara to dementia has been unimaginably painful, there are moments of light – often through music, known to be a powerful way of connecting with sufferers.
Jon explains: “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.
“She used to get very emotional, but they’ve given her medication to help her manage her emotions and she seems happy as Larry now.
“The staff 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.”