Husband of Alzheimer's sufferer discovers heartbreaking notes detailing wife's care wishes – and he'd followed them to the letterSteve Boryszczuk realised he'd followed his wife Michelle's wishes to the letter when he moved her into a specialist care homeShe was diagnosed with the disease aged just 39 and is now bed-bound and needs round-the-clock care
She had spent eight years writing detailed notes about how she wanted to be looked after which her husband has just discovered
15:24 GMT, 3 September 2012
A devoted husband who ‘lost’ his wife to early-onset dementia has discovered detailed diaries written before she became one of Britain’s youngest ever Alzheimer’s sufferers detailing how she wanted to be cared for.
Steve Boryszczuk, 47, was relieved to discover that he had followed his wife Michelle's wishes to the letter without realising it when he discovered her touching notes written when she was first diagnosed with the disease aged just 39.
Mother-of-two Mrs Boryszczuk, 43, had written detailed instructions for her family about how to handle the disease, and wrote that she wanted to live at home for as long as possible, before moving to a specialist care unit.
Discovery: Steve Boryszczuk, 47, found touching diary entries written by
his wife Michelle, 43, revealing her fears about Alzheimer's after she
discovered she carried the same gene defect as her father
Mr Boryszczuk discovered the notes as he was wrestling with the decision to move his wife into a home after her condition became too difficult for him to manage, but now he's comforted by the fact that's exactly what she wanted.
He still spends hours every day at her bedside and has been reading the notes – written over eight years – to make sure all his wife's wishes about her care are fulfilled.
Mrs Boryszczuk, who is now bed-bound and incontinent, was told aged just 28 that she carried the same gene defect as her father, who died from Alzheimer’s, aged just 46.
Her condition slowly deteriorated, and in November 2011 she became aggressive and unresponsive and Mr Boryszczuk, who had cared for her for four years, was forced to put her in The Elms, Louth, Lincolnshire, where she would receive round the clock care.
Wishes: Pages from a secret diary written by Mrs Boryszczuk after her diagnosis. In the note on the left she reveals how she wanted to be in a specialist unit or hospice only during the later stages of the disease
Steve knew his wife had been
researching AD ever since her genetic tests came back to positive, but
he only discovered her detailed notes after she moved into the care
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.'
She had 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.
Devoted: The couple pictured on holiday in Cyprus in 2010. Mr Boryszczuk said he had no idea his wife had written down all her thoughts in the early stages of her diagnosis about how she wanted to be cared for
notes entitled 'Memory, the principles and techniques' she writes: 'Say
out loud where you are putting it. Is there a reason why you are
putting it in that particular place – help to fix it in your memory.
'[…]Put up a special hook for keys and hang them as soon as you come into the house.'
Genetic: Michelle on her wedding day in August 1985 with her father Anthony who died of the disease aged just 46
also talks about drawing relationship graphs to act as memory aids and
buying locator devices to help her find things when she has forgotten
where she put them.
analysed the five emotional stages of being diagnosed with terminal
illness and researched the drugs she would need to take and bought an
automatic pill dispenser.
Mrs Boryszczuk detailed how she would like her funeral saying she wanted 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.'
In another poignant note, Mrs Boryszczuk aged just 36, wrote: 'I am suffering from anxiety and depression because early onset Alzhiemer's runs in my family.
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.'
a lorry driver who had to give up work to care for his wife 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.
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.
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.
Moving: These notes reveal a factsheet of important details to look into, as well as 'significant emotional statements'. Mrs Boryszczuk first lost the ability to complete simple tasks like driving and shopping
'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.
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
'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.
think Alzheimer’s only affects the elderly, so I am sharing Michelle’s
story to help raise awareness for young sufferers too.'
Family: Steve and Michelle after the christening of their son Richard, before the Alzheimer's kicked in
from Wickenby, Lincolnshire, she started showing signs of the disease
aged 38 and she was officially diagnosed with Alzheimer’s aged 39 a year
Michelle and Steve have been married for 27 years and used to love holidaying together.
First she lost the ability to complete simple tasks like driving and picking up shopping.
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
Mrs Boryszczuk would also disappear for hours on end, mainly because she had forgotten her way home.
Her 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.
Couple: Steve and Michelle have been married for 27 years and used to love holidaying together
Mrs Boryszczuk's notes also talk
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).'
Mr Boryszczuk 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.
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
There is no official record of the ages of when patients are diagnosed with the condition, but experts say Mrs Boryszczuk is one of the youngest known cases.
The note on the left details tips and techniques to help her remember things and on the right she explains why she didn't want to move house 'as it will disorientate me'. She also said she wanted to paint and go for drives
spokesperson from the Alzheimer’s society yesterday 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, said: 'This is pretty young. But there are other people who have developed Alzheimer’s at such an age, even though very infrequently.
'I have had one patient, also female, who presented to my clinic at this age, and I’m sure other colleagues will have had similar experiences even though it is very unusual.
'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.
'It may be that the doctors who said this to the person you are writing about meant she was the youngest they had seen in their centre as they cannot know the experience of colleagues in all other centres.
'She is probably one of the youngest sufferers.'