Young Alzheimer's patient’s wishes revealed by heartbreaking diaries

A devoted husband who ‘lost’ his wife to early-onset dementia can now care for her the way she always wanted after discovering detailed diaries written before she became one of Britain's youngest ever Alzheimer's sufferers.Michelle and Steve on their wedding day in 1985

Steve Boryszczuk, 47, cared for Michelle, 43, for four years after she was diagnosed aged just 39, before her condition became too difficult to manage at home.

When the devoted husband began the painful task of sorting through Michelle's belongings he found touching diary entries revealing her fears about the condition.

 

The mother-of-two was told aged just 28 that she carried the same gene defect as her father, who died from Alzheimer's Disease (AD), aged just 46.

Incredibly, the diaries have now revealed how Michelle spent years eight years researching the illness and writing detailed instructions to her family about how she wanted to be cared for.

In one poignant note, Michelle aged just 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.

"I have recently developed involuntary movement of the arms while asleep and have been referred to a neurologist."

In a note entitled "After diagnosis" she writes: "I do not want to move house this is very bad for a person with AD very disorientating and can cause serious deterioration in the person affected, by moving them from an environment they are familiar and comfortable with.

"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."

Her dedicated husband Steve says he still has not forgiven himself for putting Michelle in a home.

He spends 12 hours a day at Michelle's bedside and says he is comforted by knowing he can fulfill her wishes detailed in her diaries.

Steve, a lorry driver who had to give up work to care for Michelle full-time, 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.

"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.

"After she moved into the home I sat down and read through all her notes and diary and cried. She was so fearful of getting the disease after her father died.

"She was desperate to find out everything she could about the condition and what it would mean for her.

"It is a comfort knowing I can give Michelle what she wants now she is ill and cannot tell me herself.

"People think Alzheimer's only affects the elderly, so I am sharing Michelle's story to help raise awareness for young sufferers too."Steve with one of his wife's diaries - packed with her Alzheimer's research

In 2008 Michelle started showing signs of the disease aged 38 and she was officially diagnosed with Alzheimer's aged 39 a year later.

Michelle and Steve have been married for 27 years. First Michelle lost the ability to complete simple tasks like driving and picking up shopping. But as the disease progressed she would forget to look at crossroads and wait at traffic lights and she quickly became a danger to herself and others.

Michelle would also disappear for hours on end - mainly because she had forgotten her way home.

In November 2011 Michelle's condition deteriorated further and she became aggressive and unresponsive.

And after four years of being Michelle's full-time carer Steve was forced to put her in The Elms, Louth, Lincs., where she would receive round the clock care.

Michelle's sons Richard, 26, and Graham, 24, regularly visit their mother and have decided not to have genetic testing to see if they are also predisposed to the condition.

Michelle researched memory aid techniques to help her remember where she puts things around the house and counteract the effects of the disease.

She also made folders full of information on the treatment and care of people with AD and details of how she wanted her funeral.

She wrote: "See it as an occasion to celebrate a human life that has ended and support and comfort the living."

She also writes about her cherished memories of her father, saying: "I didn't tell you how much you meant to me. How proud I was of you dad and how wonderful you was (sic)."

Steve added: "The death of her father really hit Michelle hard. She was very close to him.

"I really miss Michelle. I spend every day with her, but it is not the same as having her at home.

"There is little provision for people who develop Alzheimer's at a young age so at first the carers were unsure how to treat Michelle. But now they are brilliant."

There is no official record of the ages of when patients are diagnosed with the condition, but experts say Michelle is one of the youngest known cases.

 

A spokesperson from the Alzheimer's society said: "This is one of the youngest cases we have ever heard of someone having Alzheimer's.

"Early onset Alzheimer's is considered anything under the age of 65."

Gordon Wilcock, professor of clinical geratology at Oxford University, added: "This is pretty young. But there are other people who have developed Alzheimer's at such an age, even though very infrequently.

"There is no formal process for recording the age of every person with Alzheimer's, mainly because there would be little to gain from this.

"She is probably one of the youngest sufferers."