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Last Updated: Saturday, 11 September, 2004, 23:15 GMT 00:15 UK
'My intensive care diary helped me cope'
By Melissa Jackson
BBC News Online health staff

Barry and Kathleen Williams
Barry and Kathleen Williams before her health scare
Intensive care ensures round-the-clock attention for patients unlucky enough to find themselves in a life-threatening situation but how do their relatives cope?

It can be a case of lengthy bedside vigils and the stress of not knowing if a small improvement is worth celebrating or whether it would be raising false hope.

The Intensive Care Society has set up dedicated web pages to help friends and families of intensive care patients cope after 90% of doctors said they needed more information.

One man can identify with the pain of the intensive care ward after his wife spent 49 days there last summer.

He found that keeping a diary helped him get through the ordeal.

Bolt from the blue

Tuesday 24 June 2003 is etched in Barry Williams' memory for all the wrong reasons.

He came home that day to find his 63-year-old wife Kathleen collapsed on the floor, unconscious.

It was the beginning of a long relationship with the intensive care ward at the Royal Berkshire Hospital in Reading.

Kathleen's collapse came as a bolt out of the blue, as she had enjoyed good health up until this sudden and unexplained tragic event.

Doctors said she had suffered acute respiratory distress syndrome. She was unable to breathe and was placed on a ventilator.

It was our wedding anniversary on 6 July and I wanted her to stay alive until then
Barry Williams
Barry knew his wife was seriously ill, but had no idea it would be so long before he was able to take her home.

On the Sunday after she was admitted to hospital, her condition deteriorated and Barry was told to prepare for the worst.

However intensive care doctors decided Kathleen was a suitable candidate for a new drug, which opens up the airways.

She began to improve, but it did not last long and she deteriorated again.

He said: "It was our wedding anniversary on 6 July and I wanted her to stay alive until then."

He got his wish, but by 10 July she was very poorly.

"I had her in my arms and she just arrested - her heart stopped. She died in my arms."

Emotional rollercoaster

Doctors and nurses were at her bedside within seconds and re-started her heart.

For Barry, the emotional rollercoaster was spinning out of control.

He said: "Emotionally you are outside your own body - my emotions were all over the place and I began to think 'I'm losing track of this'.

"I spoke to my son and daughter and we tried to piece things together and wrote things down.

"After this I started to do it on my own and kept a diary."

He noted down the time of his three daily visits to the hospital, who was on duty in the ward and changes in his wife's condition.

The diary helped me to get my mind in order
Barry Williams
He said: "It wasn't easy at times and when she had arrested I couldn't write anything I just had to go to bed straight away."

He found the diary a companion, with whom to share his thoughts and feelings.

"The diary helped me to get my mind in order when I went back the next day to talk about things.

"It was also useful for when Kathleen was getting better and I tried to explain how she was making progress.

"My wife hasn't read the diary. She is tending to shut a lot of that period out, but slowly, it's coming back."

The hospital's intensive care team is a keen advocate of using diaries.

Diary 'therapy'

Staff complete diaries for long-stay patients so that they have information on the treatment they have received during their stay.

They are also used as a reference point to discuss their care during follow-up sessions at the hospital.

The hospital's director of intensive care Dr Carl Waldmann said: "Patients' intensive care stay is a gap in their life and so we give them a diary to explain what has happened.

It is not uncommon that relatives have taken the brunt of all the stress
Dr Carl Waldmann, intensive care specialist
"And we think it helps their recovery process.

"We also encourage relatives to keep a diary. It is not uncommon that relatives have taken the brunt of all the stress.

"The impact on relatives is underestimated."

Relatives are also encouraged to attend follow-up clinic sessions for the patient.

"It's not uncommon to find the relatives more stressed than the patient," said Dr Waldmann.

It is something with which Barry would quietly agree.

During Kathleen's hospital stay, Barry was told three times to prepare for the worst and he describes it as "the most emotional time of my life".

He says being able to access more information while his wife was ill would have really helped him.

"It was an extremely traumatic and uncertain time.

"I would lie awake at night worrying and questions would pop into my head that couldn't be answered there and then.

"I wish I had had access to the sort of information that the ICS is providing on its website that I could then read at home when my wife was ill."

Fortunately, his wife has made a full recovery and left the hospital on 15 August last year.

Barry and Kathleen are both enjoying life and looking forward a less eventful future.

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