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вторник, 11 апреля 2017 г.

‘My wife can’t remember our baby’

Last year, Rebecca Doig, 31, was diagnosed with Alzheimer’s just weeks after falling pregnant Here, her husband Scott, 40, explains how he desperately misses the girl he married
Rebecca is now too ill to know she's a mother


Scott and Rebecca on their wedding day in 2003
Rebecca was fit and healthy when she got married
Rebecca was diagnosed with Alzheimer's while pregnant
Scott and Emily on holiday in Hong Kong in 2008
Scott can't share Emily's milestones with Rebecca

"Like most new dads, I'm absolutely besotted with my new baby girl. When Emily smiles, when she gurgles with laughter, I feel like I could burst with love. But every special moment with her is tinged with a deep sadness that her mother, my beautiful wife Rebecca, will never fully share in my love and pride for our daughter.

Because a devastating illness has robbed Rebecca of her mind, her memory and her emotions. She has no idea that she gave birth to Emily just three months ago. That day, in April this year, I placed a newborn Emily on Rebecca's lap. 'Look at our gorgeous girl,' I said, hoping she would respond.
But she just stared blankly - unable to understand. It broke my heart to see her so detached from what should have been the happiest day of our lives.
When I married Rebecca six years ago, we both knew we wanted a family together. Now we have a perfect, healthy daughter, but I know Rebecca will never experience the joy of seeing her grow up.
Diagnosed with Alzheimer's aged just 31, and eight weeks pregnant, Rebecca is the only recorded case of a pregnant woman ever being given such terrible news. There is no cure for her condition, and I have had to accept that I must now be both father and mother to Emily - and carer to my wife, too.
Bubbly, vivacious and energetic, I was instantly attracted to Rebecca the first time I saw her at the IT company in Sydney, Australia, where I was a manager and she worked in customer services.
Her smile lit up the room and I knew I had to get to know this girl. Always on the go, Rebecca was forever at the gym or out walking, but I eventually managed to land a date with her.
I knew from that first evening together she was the woman I wanted to marry, and just a few months later I proposed on a night out. It was so spontaneous, I didn't even have a ring.
A couple of months later, in October 2003, we married in a beautiful park in Sydney.
The changes in Rebecca were so gradual I hardly noticed them at first. It started in January 2007 with her forgetting little things like where she'd left her keys. I did that sometimes too, but over the coming months her memory really started to falter.
She was frustrated and confused about why this was happening to her. As time went on, things got steadily worse. She was forever losing her bag or phone and missing doctor's appointments. And then she started to struggle at work, too. She loved her job as a receptionist, but within six months she couldn't do it any more.
Rebecca cried tears of frustration and disappointment. She blamed herself, but it was so out of character we went to see several doctors. No one could give us any definite answers. One said she was depressed, another that she was suffering from stress. Neither of us dreamed it was anything serious. She was young and fit.
But she became increasingly forgetful and erratic. By summer 2008, Rebecca was losing waitressing jobs because she'd be late or lose track of orders.
And because she'd forget plans she'd made with friends, she began to drift away from them. They struggled to understand, as Rebecca was embarrassed, unable to keep up.
Soon Rebecca would tell me she'd parked the car, then not remember where it was. This really scared her and she'd be angry with herself. At home, she retreated into herself. She didn't watch her favourite TV programmes like Grey's Anatomy any more. Instead, she'd stare into space.
I felt completely helpless. I tried talking to Rebecca's parents, but as they only saw her for a couple of hours at a time and sometimes she could be completely fine, they couldn't grasp the severity of the situation. Rebecca was frustrated, too - she couldn't understand what was happening to her.
'I think I should leave you,' she'd say, tearfully. 'I'm just letting you down.'
But that was the last thing I was ever going to let her do.
The change in Rebecca was even tougher to cope with because the one person I wanted to turn to for help was the person who needed my support. Slowly but surely the dynamics of our relationship were shifting from equal partners to me being a carer.
By early 2009, we agreed Rebecca would stop working. The constant job losses were getting her down. Relying on my income as a council worker was a stretch, but I knew it was the right thing.
Soon afterwards - still determined to find out what was happening - we went to a specialist hospital for a series of scans. One showed that Rebecca's brain had shrunk slightly, but they were inconclusive.
By spring 2009, I didn't feel safe leaving Rebecca by herself. I got phone calls at work from my friends, saying they'd seen her in the town centre looking dishevelled and panicked. I was terrified something might happen to her. I couldn't afford to give up my job so my parents offered to look after Rebecca while I was at work.
The tests continued and a few weeks into the summer, a doctor said she should see a dementia specialist. I was shocked. Dementia was something that happened to old people, not my young wife. There was no history of it in her family. We wanted a diagnosis, but not that.
I was still trying to get my head around the idea, when a routine urine test showed that Rebecca was eight weeks pregnant. It was a total shock.
Between episodes of forgetfulness, Rebecca and I had still been intimate. She was still the woman I loved.
The timing couldn't have been worse. Rebecca was freaked out. She understood she was carrying a baby, but she also knew she was unwell.
A month later, results of a lumbar puncture to her spine revealed that Rebecca had Familial Alzheimer's, a form of early-onset dementia which can be hereditary and causes rapid memory loss. It's rare and there's no known cure.
Finally, I had to face up to the fact the woman I married was never coming back. I was devastated. Until that moment, I'd nursed the hope that something could be done, but now I knew that while Rebecca was still here, everything that made her who she was - her laugh, her smile - was gone. Rebecca's face became vacant. Her beautiful blue eyes appeared dead - I could no longer tell how she felt any more. It was bewildering. She looked fit and healthy, and yet she was anything but. Alzheimer's is like a form of death. If it hadn't been for the baby, I couldn't have coped.
But our unborn baby raised further issues: there was a 50 per cent chance our child would inherit Rebecca's rogue gene and face the same fate. Together with her parents, Brian and Cheryl, I made the decision to get our unborn baby tested. To our relief, the test came back clear.
As Rebecca's stomach grew bigger, her state of mind deteriorated. Soon, she could no longer hold a conversation or do anything other than very basic things such as shower and brush her teeth.
I cared for her 24/7 and only when she was asleep did I let myself cry. Life as I knew it changed beyond all recognition.
After Christmas, I found a respite centre for old people with dementia. They were happy to offer Rebecca a few hours care each day. It was heartbreaking, but I had no choice.
On the first day, Rebecca had a rare moment of clarity. 'This is my life now,' she said her eyes locking on to mine. And in that moment, my heart melted with sadness. It killed me that she could see where her life was going and there was nothing I could do.
Emily was born by Caesarean section on April 6, 2010. I cried with relief at her safe arrival. Yet it was hard to know whether Rebecca knew she'd had a baby. She held her, but didn't smile. I have no idea if she can feel love any more, but it's not her fault.
Today, Emily is healthy and strong, with Rebecca's eyes and smile. But as I watch my beautiful daughter grow and flourish, her mother deteriorates before me.
I so desperately want to share all the milestones of our daughter's life, but I can't. For Rebecca, the parts of her brain that control memory, desire and affection have gone. She can't convey emotion, although sometimes I've seen her smile at Emily. Those fleeting moments are magical, but all too brief. But she does love to cuddle Emily and they do have a bond. One side effect of her condition is that Rebecca's arms aren't strong enough to hold Emily, but I prop her on a pillow next to Rebecca so they can be close.
Now, as I Iook after Emily, I care for Rebecca. I have to dress her and make sure she brushes her teeth. I can't leave her alone for more than a minute in case she wanders off. I'm lucky in that my employer has given me several months off work, but after that I'll have to rely on a team of carers to help me. It's going to be hard, as Rebecca trusts me implicitly.
I try not to think about the future. When Rebecca was diagnosed, doctors said she had five years left at most. I keep hoping that she'll be around to be part of Emily's life.
I've had some dark moments and there have been times when I've thought: 'Why me, why us?' I miss the woman I fell in love with every day. Although there are times when I find it hard to cope, I still love my wife deeply. When we got married, it was for better or for worse. I'm going to keep that promise."
For more information about Scott and Rebecca, visit Doigfundraiser.com.au

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