“Throughout the ordeal, we found invaluable support and information from Meningitis Now.”
“Mum was always an extremely social and independent person. Working several jobs, playing in a local brass band and caring for her mother, she was always on the move.
“On the morning of November 23rd 2023 though life changed dramatically for my mum and our family when she was found unresponsive at home by a concerned friend. Her friend noticed that she hadn’t been in contact, like she usually would. She had recently been battling with what she thought was severe flu. She had symptoms such as an achy body, altered mental state, intense irritability, chills and severe congestion.
“She had sought advice from the doctor, who told her it was a viral infection, and they couldn’t give her anything. They told her to go home and take Lemsips.
Quickly rushed to hospital
“When the ambulance arrived, she had a temperature of 41.2 degrees and was quickly rushed to the nearest hospital on blue lights.
“I was there on her arrival. Her body was completely stiff. Her hands clamped shut and couldn’t move an inch. She was rushed to resus, where the doctors were confused and couldn’t understand what the problem was.
“The doctor asked us lots of questions and eventually told us it was something to do with her brain, and they were trying to figure it out.
Performed a lumbar puncture
“Eventually they performed a lumbar puncture and found that she had a serious case of bacterial meningitis.
“The news hit us hard, as we thought meningitis only happened in babies and knew that it was a serious life-threatening condition, but apart from this we didn’t know much else.
“Mum was admitted to ICU and began a rigorous course of antibiotics. Each day brought a glimmer of hope as she showed signs of improvement. Her resilience shone through, and soon, she was moved from the ICU to a general ward (renal ward) and within days she was walking again, albeit assisted.
A devastating turn
“However, just as we began to believe in her recovery, things took a devastating turn and her condition deteriorated rapidly.
“My mother’s speech became slurred and when the doctors asked her name, she kept saying 13, she was extremely hot and was unable to eat or drink. It seemed as though the nurses and doctors on the ward, had no idea that she had deteriorated, and so my wife and I insisted and demanded several times that a doctor conduct further tests on her as the day before she was walking.
“That night they checked her temperature, which was rapidly rising, and the last recorded temperature was 39.8. She was put back on oxygen and fluids.
Confirmed our worst fears
“It wasn’t until the following day when my dad and I visited her that we were taken seriously. Once again insisting and demanding that someone help my mother, as she had deteriorated even more to the point that she was unable to communicate whatsoever and was clearly delirious. Eventually, a few hours later they performed two lumbar punctures on my mum and confirmed our worst fears, the antibiotics were not working, and the meningitis had spread.
“She was placed on a more potent regime of antibiotics, administered via an IV drip, and remained in the hospital for the remainder of the month. Day by day, she slowly regained consciousness and was able to communicate through smiles. My wife and I would sit with her at mealtimes, as she was unable to use her hands to feed herself or to drink. This was a very challenging time for me and my wife and mum.
“Eventually mum regained her strength in her hands and was able to speak. She informed us that she had been experiencing hallucinations throughout the nights and was unable to sleep because of the lights and noise.
Significant strain on mental health
“Three-and-a-half weeks into her hospital stay, she was moved from the ward to a side room, because of a virus outbreak. She hadn’t seen daylight in this time, as the windows to the ward had been covered up for the entirety of her stay. She was now secluded, and on a constant IV drip, unable to leave her room because of the virus.
“This put a significant strain on her mental health, and she started to feel extremely depressed and emotional.
“My wife spoke with the nurses and explained the situation, and they allowed us to take mum outside. This was the best feeling in the world. She was so happy to feel air on her face and to see daylight.
Moving in the right direction, until …
“Everything was moving in the right direction, until one day after going outside, mum felt a tightness in her left arm, the left side of her face dropped, and her tongue and lips were tingly. The physio team notified the doctors, who carried out many tests. It transpired that mum was suffering with Focal Seizures, which they provided medication for.
“From the very beginning of my mother’s stay in hospital, we were informed every few days that they were waiting for a space to become available on the neurology ward, and that she would be moved there very soon. However, this never transpired, and my mother did not ever see a neurologist doctor, even though this was promised by the doctors on the ward.
Discharged in time for Christmas
“It was nearing Christmas, and we wanted mum to be able to enjoy the holidays out of hospital. On the 22nd December we were given the news that they were allowing her to be discharged. We were so happy.
“Upon mum’s discharge, there was no information given to her about meningitis and its effects, and she was given no referrals, she was just sent on her way which left her and the family feeling very upset and confused.
“Mum came to live with my wife and I for one month. I would care for her by making sure she had her medication on time, making food and drinks for her, and helping her with her physio.
Well enough to return home
“Eventually mum felt that she was well enough to return home, where she lives alone. One month after her return from home, the reablement team came to visit her each day to help with her transformation back into home life.
“Six months into her recovery, mum is still adjusting to her new normal and struggles to accept her new limitations.
“The meningitis has left lasting effects; she now suffers from seizures, which prevent her from driving and mean she has lost her independence. She needs assistance to walk and grapples with anxiety and panic attacks. Her social life has been significantly impacted, as she can no longer participate in activities she once loved, like playing in the local Brass Band, due to the pressure headaches in her head and the noise sensitivity. She also suffers with depression and gets extremely emotional. Yet, she remains determined, learning to navigate her limitations and find joy in the small victories.
Support from Meningitis Now
“Throughout the ordeal, we found invaluable support and information from Meningitis Now. It provided information on the disease and hearing other people’s stories allowed us to provide information to my mum. Their resources helped me understand the disease and advocate effectively for my mother’s care.
‘However, we often felt overwhelmed and wish there had been more direct support from the hospital. Our experience highlights the critical need for comprehensive care and support for families dealing with meningitis.”
