When Steve Boryszczuk made the difficult decision to place his wife of almost three decades in a home to help care for her early-onset dementia, he was heartbroken.
But he has found her diary which offers the consolation of detailed instructions to the family about how she wanted to be looked after, meaning her husband can now care for her the way she always wanted.
Mr. Boryszczuk, 47, had cared for Michelle for four years at their home in Wickenby, Lincs, after she was diagnosed aged just 39 with the disease.
But last year the mother-of-two’s condition became too difficult to manage, forcing her devoted husband to make the devastating decision to put her in a care home.
After starting the painful task of sorting through her belongings, he was reduced to tears after discovering a poignant diary she secretly kept for eight years.
Writing about her fears dealing with the condition, Mrs Boryszczuk, 43, had also carefully researched the illness after being told in her 20s that she carried a hereditary gene defect.
She had also written detailed instructions to her family about how she wanted to be looked after, meaning her husband can now care for her the way she always wanted.
In one emotional note, compiled when she was 36, she wrote: “I am suffering from anxiety and depression because early onset Alzhiemers runs in my family.
“I have had a positive DNA test. I am at onset age for my family.”
She had been told aged 28 that she had the same gene as her beloved father, Anthony Rusling, who died from Alzheimer’s Disease (AD), in 1991, aged 46.
I want to paint, walk the dog, go for drives etc […] I would in the later stages want to be in a specialist unit or hospice.
In 2008, she started showing signs of the disease before being officially diagnosed with Alzheimer’s a year later, aged 39.
In another note, entitled “After diagnosis”, she wrote of her terror at being told she had the disease and how tasks such as moving house would have caused chaos.
She wrote: “I want to paint, walk the dog, go for drives etc […] I would in the later stages want to be in a specialist unit or hospice.”
Together with her diary, she had also filled folders with information on care and treatments and details for her funeral, in which she insisted on a ceremony not a service.
She wrote: “See it as an occasion to celebrate a human life that has ended and support and comfort the living.”
She also researched memory aid techniques to counteract the effects of the disease and help her find items and how she and her husband should join a support group. She also wrote about her cherished memories of her father.
When she compiled a list of the emotional stages of diagnosis, she ticked depression and crossed out denial, anger and bargaining.
As the disease took told, she first lost her ability to complete simple tasks but soon became a public danger and would disappear for hours in end because she had forgotten her way home.
Her condition further deteriorated in July last year and three months later she was placed in The Elms care home, in Louth, Lincs, where she receives round the clock care.
Mr. Boryszczuk, a former lorry driver, now spends 12 hours a day at her bedside after giving up work to care for his wife full-time.
Today, experts suggested she was one of Britain’s youngest ever Alzheimer’s sufferers and Mr. Boryszczuk said he was sharing her story to raise awareness for the illness.
The couple, who have been married for 27 years, used to love holidaying together but now Mrs. Boryszczuk is bedbound and incontinent.
Today, he admitted he had not forgiven himself for putting her in a care home after he “lost” his wife but he took comfort in the knowledge that he can fulfil her wishes detailed in her diaries.
He said: “I lost Michelle three years ago. It’s difficult when you watch a loved one slip away and there’s nothing you can do to stop it.
“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. I’m learning to live all over again.”
He added: “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.
“I had no idea she was collecting all this information on the condition and writing all her thoughts down – she never spoke to me about any of it.”
Their sons Richard, 26, and Graham, 24, also regularly visit their mother and have decided against having the same genetic testing.
One of Michelle Boryszczuk’s diary entries:
“After diagnosis the most important thing is NOT to move, I have lived in this house for 20+ years and I love Wickenby and the area moving will disorient me, making the AD worse. I will still enjoy walking the dog, painting, going for drives around the TK & Yorkshire. All the things I have always done incl classical films& music It will help me and also you Steve to attend the support group in Lincoln once a month they meet I would like to be with other people like me. I want you to help me stay at home as long as possible by using assistive technology by putting a calendar up where I can see it and put things”
Reprinted with permission of The Telegraph.