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London - After watching his young wife succumb to the ravages of Alzheimer’s, Steve Boryszczuk faced the heart-rending decision so many carers have had to confront – whether or not to place their loved one in a care home.
Filled with guilt, he eventually agreed that Michelle – at 43 one of the country’s youngest sufferers – needed to be looked after by health professionals.
It was only when he went through her belongings that he found a comfort he could barely have hoped for.
Michelle had kept a secret diary in which she chronicled, among many other heart-rending emotions, her realisation and acceptance of that fate.
The journal addressed the difficulties she was facing in day-to-day life, her brave attempts to hold back the disease’s development, and how she wished to be cared for as her mental faculties deteriorated.
Michelle had started her diary when she learned she had early onset Alzheimer’s at 39. The hand-written pages provided some solace to her husband by assuring him that he had followed the unspoken wishes of the mother-of-two.
Her move to a professional environment providing round-the-clock care was given implicit approval when she wrote how she realised she would eventually have to reside in a “specialist unit or hospice”.
Mr Boryszczuk, who gave up his job as a lorry driver to look after his wife and still spends up to 12 hours a day by her bedside, has now released excerpts from the diary to raise awareness of the condition.
“It’s difficult when you watch a loved one slip away and there’s nothing you can do to stop it,” said the 47-year-old, who lives in Wickenby, Lincolnshire. “I thought Michelle and I would grow old together and tell our grandkids stories about how we met. But that’s not going to happen now. I miss my wife every day but I have to accept she is gone.
“Putting Michelle in a home was the hardest thing I have ever had to do, but it got to the point where I just couldn’t give her the care she needed.
“After she moved into the home I sat down and read through all her notes and diary and cried.
“It is a comfort knowing I can give Michelle what she wants now she is ill and cannot tell me herself.”
Mrs Boryszczuk lost her father to Alzheimer’s when he was 46. She was 28 when she was told she carried the same gene defect that made her susceptible to the disease. She first noticed symptoms in 2008 and was formally diagnosed with the disease a year later.
In an effort to hold back her symptoms, she recorded key details about family members in her diary, compiled lists of where she placed things and labelled cupboards with their contents.
The ability to complete everyday tasks such as driving and going shopping were the first major problems. These were followed by forgetting to check for traffic when she crossed roads.
She also began disappearing for hours on end as she had difficulty recalling her way home. By July last year her condition had deteriorated to the point where she was unresponsive and aggressive.
After four years of acting as her full-time carer, her husband, whose Polish father sought asylum here during the Second World War, put her in a care home.
Their sons, Richard, 26, and Graham, 24, regularly visit their mother and have decided against having the genetic tests which would show if they face the same fate.
Mrs Boryszczuk also wrote movingly of the type of funeral she wanted when she died.
“See it as an occasion to celebrate a human life that has ended and support and comfort the living,” she said. - Daily Mail