Meningitis in your words

Jeni Tucker's story

  • Location: England
  • Categories: Meningococcal
  • Age: Adult 25-59
  • Relationship: Child
  • Outcome: Bereavement
Jeni Tucker

My daughter, Kate, was 31 years old in October 1995, and a third year mature student at Reading University studying for her degree.

My husband Ken and I were looking after her 10-year-old son Aaron that weekend while she was studying. Ken thought she did not look well when we picked Aaron up but she said she was OK and and when she phoned on the Sunday morning she did not say anything was amiss.

Just before we were leaving to pick up Aaron from school on the Monday, Kate phoned and said she had a headache and could we bring painkillers. Ken said she sounded awful. We picked Aaron up and luckily, for the first time ever, he had a door key with him as the sight that met us was unforgettable.

Although she was upstairs in bed and in considerable pain she had been really ill downstairs. Ken stayed downstairs to clean up. She said she had the flu, and Aaron helped me find the doctors' telephone number and it was arranged to take her there before surgery started. She was unable to dress herself, and, as I helped, I noticed deep red blotches all over her body apart from her face, and I had no idea at all what was wrong.

We struggled to get her down the stairs and into the car and I went into the surgery with her. The GP took her hand to take her pulse and immediately noticed the blotches, and he then asked me to get her onto the couch. He phoned for an ambulance and also a local hospital for a bed and said it was meningitis. She could not swallow so I moistened her lips with water, and at that time I thought she would be fine after two weeks in hospital.

When we arrived at the hospital she was taken into a room on her own and that was the last time we saw her conscious. We were advised to go home and wait. We later got a call from the nurse looking after her to say Kate had suffered a heart attack and lines were being put into her, before being transferred to a larger hospital with an IC unit. She arrived a couple of hours later and was in a coma and wired up to all the machines imaginable. During that first night her kidneys failed and she developed pneumonia. We had phoned family members and the nursing staff were very good at letting us all know how she was and when the next phase developed. They informed us that Kate had contracted meningococcal septicaemia and bacterial meningitis.

We all took turns sitting with her and talking with her and telling her to fight this awful disease. 

On the Wednesday we saw that her hands and feet were black and the rest of her limbs were hard and she was swollen. The staff asked for photos of her so they could check on how she was changing. They said there was not much hope that she would survive and after my son's arrival on Friday from abroad they would have to let her die. There was never any mention of the words "switching off her life support machine".

We had been staying in the hospital flat next to Intensive Care and on the Thursday when we went in to see her I noticed her eyes were different. 

Ken said to the Sister on duty "she has gone blind, hasn't she?" and I could not believe it.

The Consultant said they were going to take her down for a brain scan but it would take at least two hours to prepare her. Her best friend came to say goodbye and I was helping her to come to terms with what was happening and afterwards I saw that Kate had not been moved. The Consultant said they were then certain she was 100% brain-damaged so they would not move her and that she would die at 3pm that day.

"I had the horrendous job of explaining to her son that she would die after they turned off all the machines",- says Jeni.

Apart from my son, we were all with her as her life expired. My daughter-in-law saw a notice about the Foundation in her GP's surgery and gave me the information pack at the funeral. I could not look at it for a month but then phoned the helpline. In the new year we visited the Thornbury office with Aaron and met everybody. I did some cheque collections in my area and it was a few years later that I joined the pilot scheme for the befriending programme. Having spoken to several befriendees it made me stronger and more able to deal with the grief.

Jeni Tucker
March 2009