Warrior Mum - Patricia Rolston's Journey

Encephalitis, Learning Disability and Epilepsy

A mother's love

Introduced by Maria Walker Learning Disability student nurse at Hertfordshire University 

 

I am already a huge fan of the Warrior Mum stories; they have become a valuable and integral part of my Learning Disability Nurse studies at the University of Hertfordshire. I am so grateful to these amazing women for being brave enough to share some of the most intimate and, occasionally, traumatic moments of their lives. The insight offered by these stories will make me a better Learning Disability Nurse when I qualify this time next year. I will remember to always respect, consider and fight alongside these families in order to provide the best possible care to the children they adore.

When I read Pat's and Lyndsey's story I was once again touched by the enormous courage and boundless love for their children these amazing people demonstrate time and again. Pat's fight began the moment Lyndsey developed the encephalitis which lead to brain damage and a rare form of epilepsy. She fought for her to walk, then to keep her school open. She endured shocking insults, suggestions and accusations from professionals who were supposed to be supporting Lyndsey and she is still fighting to keep her safe and properly cared for. All of this whilst fighting for her own health with little support and a terminally ill husband. Pat speaks from her heart and I was bursting with pride at her successes and furious at the disregard shown by some of the professionals that were paid to support her. Pat's story increases my passion for Learning Disability Nursing and my hope of being a reliable and valuable support to families like hers.

 

This is Pat's story   

"Some years ago when I asked the social worker for some more pads for Lyndsey he was annoyed and said, 

'Why don't you have a bag fitted to her to save money?' 

I went mad. I can't tell you my exact words as they were so bad. 

He then said, "My niece had one fitted!' 

I said 'Your niece probably needed one for health reasons. Lyndsey doesn't and especially not to save money which does not even belong to you.'"

Linda and Pat

I was born in New Cross Hospital in Wednesfied near Wolverhampton in 1955. I have two younger sisters, Linda and Debbie.  I had a happy childhood. We weren't well off but my dad worked hard and we had everything we needed.
I was very close to Linda as there is only 18 months between us. She was born with a cleft lip and was sometimes bullied at school so I was always getting in trouble for standing up to the bullies. I didn't care though. No one picks on my sister.
I was nine when Debbie was born and Mum nearly died; she was in hospital for over a month. She was anaemic and developed sleeping sickness so I used to help her look after my baby sister. I have always been close to Debbie too.

Pat

I met my first husband while I was still at school. Barcroft was a girls school and they were all jealous when I met Mac. A year later when I was 15 we got engaged. I left school just after because I wanted a job so I could help save up to get married. My maths teacher and art teacher both cried when they found out I was leaving. They spent ages trying to convince me to stay on, but I was young and foolish and convinced we were in love and that it would last forever. What did I know? I got a job straight away and hated it but loved my next job at the Yale lock factory.

 
I married at the age of 17 in 1972 and gave birth two years later. I only have one child; Lyndsey Anne, she was born a beautiful healthy baby girl. I loved her so much. She was perfect in every way.
The day she was born she was holding her head up trying to look out her little glass crib. A nurse who was walking past said " Oh my gosh, look at her. She's been on this earth before.

Baby Lyndsey

M. Tell us what happened to Lyndsey?
Sadly when my little girl was 5 months old she developed encephalitis. Our GP treated her for colic and because the encephalitis was left untreated, it caused massive brain damage and epilepsy. She spent a week in hospital after her diagnosis. They ran a battery of tests and said she was suffering from a rare form of epilepsy called Salam Convulsions and these were caused by the Encephalitis. She was the only case in 40 years to have this type of epilepsy at the hospital. 

Lyndsey

They said she would never walk, talk or do anything. In fact she would be a cabbage - their words not mine. As they were telling me this it seemed as if they were drifting away from us. I was clutching Lyndsey harder and harder and felt as if I loved her more and more, if that was possible. I said to them “No, you're wrong. She will walk. She will, you'll see!” They just gave me pitying looks. I was devastated. 

The following year I spent months walking my little girl up and down the hall in our flat. It was a really long hall and back-breaking. She was two years-old by now and I continued to try to get her walking every day to the echoes of "Leave her alone, the doctor said she won’t walk!" from Lyndsey's Dad, but I had the last laugh. It was almost a year later on her third birthday that my sister Debbie, came to visit. She opened the front door when we were at the other end of the hall and she said “Come on Lyndsey!” and held her arms open. Imagine our shock as my little girl walked out of my arms the whole length of the hall right into Debbie's arms. We were screaming and laughing and crying all at the same time. The look on her Dad’s face and the consultant’s was priceless. 

Not long after Lyndsey learnt to walk we moved into a new house. It was 1978, my marriage broke up and we divorced. I was sad it had failed but we were too young and I don’t suppose our daughter’s problems helped matters. I was determined to make our lives as happy as I could and so life went on, but it was hard. I got a part time job as a barmaid to help with the finances. 

Mum and daughter

Life went on and I was happy. I had dates and the odd one lasted a while but I would never take anyone home to meet Lyndsey. I took her away every year to Butlins holiday camp in South Wales. We loved it there. When we got the train on that first holiday we had to stand all the way. After that I learnt to drive, determined never to rely on a train again. And I’m happy to say we never have. 

I also felt I needed to offer my support so I joined a mothers group at Lyndsey's special school and helped to raise money. I used to help the staff take exercise classes and go on outings every week with the kids because there wasn't enough staff to help or push the wheelchairs. I loved feeling needed. I helped raise money too at the local children’s respite home. 

Lyndsey

The years passed and it's true to say I had to fight for every single thing Lyndsey needed. I even fought to stop the council from closing the special school. They wanted to sell it to the Catholic Church and move our kids miles away, but we fought and protested and eventually won.

But my poor little girl was in and out of hospital all the time. 
If not with her seizures, which she has every day, it was chest infections. She had pneumonia nine times over the years. Then there were cuts and bruises from banging her head and face while having her seizures.  

Lyndsey with her trusted friend.

  

M. I suppose Lyndsey's epilepsy is always in the forefront of everybody’s mind.

A day in the life

Oh yes! Lyndsey's broken her nose nine times and once bit her lip off when she landed on her face. I was terrified they wouldn't be able to stitch it back but they did. The worse one ever was in 2011. Lyndsey had a seizure while she was in respite and landed on her face. Her two front teeth were stuck in the laminate floor and were broke off just leaving the roots. She broke her nose and had a hole in her tongue and inside her mouth was black.  She looked terrible and went straight into status epilepticus from the shock of the pain. She had over 100 seizures and the resuscitation team at the hospital tried everything to stop her, but nothing was working. They decided they would send her to intensive care and put her in an induced coma to try and save her. I was crying and thought I was going to lose her. My heart was breaking.....but just as the ICU doctors came for her, she stopped fitting. I couldn't believe it. Thank you God!

                  

M. How did you cope with all that stress?

I became ill, really ill. I started get severe diarrhoea. The doctor said not to worry it was the stress of caring for my daughter. But it was getting worse; it was everyday! My GP then told me it was Irritable bowel syndrome and not to worry unless I started losing weight.

Then it became constant and I was being sick twelve times a day. I lost 2 stone and when I went back to the doctor's he panicked and arranged for me to go to hospital. I was convinced I had cancer. I paid off my debts and made plans for Lyndsey to live with my sister. I resigned myself to the fact I was dying. I had many more tests over the next year and lost 6 stone before they found out I had Crohn’s disease and ulcerative colitis.

I was relieved it wasn’t cancer. But what was Crohn's and colitis? I had no clue. I soon learned though. It's absolute hell. There is no cure and they don't know what causes it. It affects your whole body. You have inflammation of the digestive system, boils and abbesses in the bowel or intestines. You can't eat or drink when having a flare up. You suffer from total exhaustion, anaemia and are in constant agony. Hell on earth.

I was put on steroids and a concoction of 48 tablets a day + 16 pain killers. Everything I did revolved around where the nearest toilets where. I soldiered on looking after Lyndsey and gradually gained weight and some quality of life. 

M. What makes Lyndsey smile?

Lyndsey's always loved traveling, that's why we went away so much. She loves going to Alton Towers and places like that and goes on the big rides. She has never had a seizure on a ride and loves the big dipper, the Nemesis and pirate ship and stuff like that. She has no fear and her consultant said it was okay. She goes to the disco every other Tuesday night which she loves, with her carers and they also take her swimming every week. She loves loud music and musical toys and boxes and those old style musical teddies that you wind up with a key. She likes to be outdoors and enjoys going for long walks which I can't do now, but her carers take her instead. They also get her out of the wheelchair so she can walk on soft grassy areas with them.   

She has her moments too and will screech and shout when she gets angry. I and her carers can tell from her sounds what she wants but strangers probably wouldn't. 

She does keep her clothes on and is not bothered by what she wears. She would go out naked if I let her. I like to dress her in modern up to date fashion if I can.

She is not bothered about shoes. As soon as she’s indoors they are off. She has to wear ankle boots or she looses them when she’s out in her wheelchair.

She doesn't go to the hair dressers any more. She was barred from two some years ago. I used to do her hair myself but can’t anymore so her carers help me. They are golden.

Did you manage to make time for yourself or meet anybody special?

 I thought no one would ever love me again what with this disease and Lyndsey to care for. Then I met Keith; the love of my life. 

Keith and Pat

He was divorced and had two children, which means I now also have two step children, Jason who's a year older than Lyndsey and Jane who's a year younger. They have never lived with us as they were all grown up when I met their Dad. But I love them as if they were my own and if it weren't for them I wouldn't have three lovely grandchildren that mean the world to me. 

Keith and Lyndsey

M. What was love like the second time around?

Keith and I were so happy. Every year we would take Lyndsey to Florida and Spain and we used to take her away to Blackpool or Alton towers every Bank holiday.  

He grew to love Lyndsey as much as I did. My health improved and I would just have the odd flare up, but we coped with it.

Wedded bliss

 He asked me to marry him and as we were going away to our friends in Blackpool for that Christmas 1997, we decided to sneak off and do it on the quiet. We had both been married before so we didn't need to have a big ceremony. 

I got a special license and we were married two days after Christmas. Lyndsey was with us so we decided to have a belated honeymoon in New York and Niagara Falls in Canada the following March; just the two of us.

And it was heaven.

I'll never forget how happy we were. 

M. And then tragedy struck?

We had been married for four years when Keith almost choked to death whilst eating his tea one Saturday night. I got him to the hospital and they checked him over and advised him to ask our GP to organise an endoscapy, which we did. But they couldn't get the camera down Keith’s throat. Turns out he had cancer of the oesophogus and he only had a 2% chance of survival.

We were heartbroken.

He was given two lots of Chemotherapy and had a massive operation to remove part of his stomach. After the surgery he did really well and began to gain weight. Fingers crossed our lives were getting back to normal again. We even went back to Spain twice during the following year but then two years later after returning from holiday my husband collapsed in the street with pain from his kidneys. The next morning he was yellow from head to toe. The GP sent him back the hospital in Birmingham where he’d been operated on.  

During this time I had been having a flare up, which I ignored because of worrying about Keith. I intended seeing my GP when he was well, but they kept Keith in, so I set about visiting everyday from 1.00 till 8.00pm.

Each day I felt worse than the day before.

Then, one Saturday I got up after a really bad night and my stomach was so swollen. I made a coffee and suddenly a hole appeared in my skin and faeces was running out. I was horrified.  I didn't ring an ambulance as Lyndsey was in bed asleep, so I rang my mum who came straight to the house. Then I rang my sister who came home from Wales.

I hadn't realised how bad it was. I had a fistula and a blockage or stricture in my bowel. I had to have four pints of blood. Doctors told my sisters that I wouldn't live through the night but I'm a stubborn old bugger. 

I thought I'd be operated on immediately and would be visiting my poor husband within two weeks, but I couldn't have been more wrong. Thank God Lyndsey was being cared for by my mum and sisters.

M. What a shame you were in a different hospital to Keith.

We were in different hospitals for four and a half months. It was a nightmare. We fretted and worried about each other - and Lyndsey, and my weight dropped to 6 stone. 

Pat in hospital

I had difficulty breathing and sleeping because I was so stressed out with it all and I was too malnourished and sick to be operated on. When I was well enough to move off the bed they let me use their phone to ring Keith. Twice they let my sister Debbie take me to visit him in a wheel chair, on the promise I came straight back. I was shocked and saddened to see he was as thin as I was.  Then in May my world crashed. 

My sister Linda rang the hospital for me to see how Keith was and was told he'd been sent home. She said but there's no none there to help him and the nurse said, well he can wash himself!! Linda was very upset with them and she and Debbie came up to my hospital. They didn't say anything to me but went and told the staff nurse on my ward and all three of them were crying. The staff nurse then phoned my surgeon to see if they should tell me because they all thought I wouldn't be able to cope. But he was great and said no, you must tell Pat. She is well enough to be operated on now and she won’t die. Tell her to go home and be with her husband and her family and come back when she's ready.

I was at Keith's side when he passed away three weeks later in June 2003. My heart was heavy and broken, I loved him so much. He’d brightened up my life and I wondered how was I ever going to cope without him? The night before he died he whispered to me because he could hardly talk and asked me if it hurt when you die? I said no, it will be peaceful and you won’t be in pain anymore. It will be a beautiful place and everyone you ever loved who went before will be there waiting. He smiled and a tear rolled down his cheek. 

I was bereft after he passed away but of course I was relieved that he wasn't going to suffer anymore. 

After the funeral I went back into hospital to have half my bowel removed when all I wanted was to die and be with Keith. I couldn't believe God would give me this wonderful man and then take him from me so cruelly.  

I hated God.

A penny for her thoughts..

M. You also had the added worry of Lyndsey. How was she coping?

I had forgotten how Lyndsey would be if I left her; I was literally drowning in my own grief. 

It wasn't until Mum told me that Lyndsey was crying and going from room to room looking for me that I realised she needed me as does everyone else. 

I had to get well for my daughter.

M. Have you always had social work support?

Over the years, I’ve only had 2 social workers that have been any help. One was only helping us for a short while but she was lovely. Sadly she died from breast cancer, she was only young.

The one I have now is not much help so I tend to go higher up in the Department and find they take more notice and try to meet our needs. There was one social worker when Lyndsey was 18 or 19.  When I asked for some more pads for Lyndsey once he went mad and said, why don't you have a bag fitted to her to save money, I went mad and can’t tell you my exact words as they were bad. He said my niece had one fitted! I said your niece probably needed one for health reasons. Lyndsey doesn't and especially to save money, which is not even your money! 

I asked him to help me to get a down stairs wet room for Lyndsey and he said there wasn't room and that I would have to move to a bigger house, which I did begrudgingly. They would build one as soon as I moved in.  However, after I moved they kept ignoring my phone calls. I was so desperate as this was the time my Crohns appeared.  When I contacted the social worker he kept saying, I'm not your social worker, I'm Lyndsey's, and I replied yes, but if I am so ill and die who's going to look after her then? Five years had passed and still no wet room, so in desperation I wrote to the ombudsman.

As soon as she received my letter the council delivered all the building material. The Ombudsmen phoned me then next day and came from Coventry to visit us. She was very angry and wanted the names of everybody I had dealt with in the Social work Department and Council. She was also angry when I told her how Lyndsey’s social worker had treated us.  Not long after the wet room was finally built and Walsall council were made to pay us £10.000 compensation. I never heard from Lyndsey’s social worker again. In fact I didn't have a social worker for a long time.  

I did have a woman who was a social care facilitator for a few years, Shirley. She was lovely.  She did the same as a social worker but got paid less. Then a new Chief Executive of Social Care and Inclusion for Walsall Council came on the scene and got rid of her and all the mature social workers and replaced them with young people who seemed to lack experience and common sense.

M. So at long last you had home adaptions to make life with Lyndsey a little easier.

I did but I still had to fight for support for Lyndsey. In October 20012, I had another lucky escape. I spent the whole night throwing up and my stomach was agony. I had collapsed on the bathroom floor and couldn't get up because of my joints and Lyndsey was on the bed fitting and it took me ages to crawl back into the bedroom to help her. All I could do was phone my sister, she rushed round my house picking Mum up on the way.

I was rushed to hospital and had to have emergency surgery that night. The doctors said if I hadn't got there when I did I would have died. My blood sugar was 36.9 and my blood pressure was 36 over 42. I think I had God on my side.

After I came out of hospital, my nephew Matthew who was 34 at the time came to stay with us to help. I already had Harmony Care to have Lyndsey for 5 hours a day from 10.00 am till 3.00pm . The surgeon told me I wasn't allowed to lift anything or drive for 12 weeks so naturally Matthew was concerned that I wasn't getting enough help and rang social services to try get us extra support. 
Another sweeping change was that we no longer had a specific social worker and Matthew was put through to the duty social worker who knew neither Lyndsey nor myself.

I will never forget what she said.

She said I was making it up to get extra help and that I could manage if I wanted to or put my mind to it. Matthew was livid and so was I.

In the end they were convinced enough to let me have 24 hour care for Lyndsey for the full 12 weeks.

I still cannot believe she said I was making it up..

To know I can have 24 hour care when I need it is a big relief. I will need 24 hour care for at least 6 weeks for 4 separate operations to have both knees and hip operations.  Plus, I never know if or when I will have to get further operations on my bowel because of my Crohns. I hope not but you never know.

Lyndsey

M. Have you ever considered Lyndsey going into residential care?

No, I would never let Lyndsey go into a residential home. This Government and the one before convinced me how their inadequate actions of running the care system at even a basic standard of decency is disgusting , No compassion for the service users and even the QCC are questionable when things go wrong under their noses. Take Winterbourne View for example.

No way, never! Harmony Care who look after Lyndsey are a private company I know, but the carers are fantastic. They love Lyndsey and she loves them. If for any reason my sisters could not have Lyndsey when I die, I want her to have supported living with them in her own home and my nephew Matthew will make sure that happens.

M. What would you like to see done to make life a little easier?

 I have had to fight for everything Lyndsey ever had or needed. It’s been hell and I am sick of fighting. I want to have fun and be happy but all the time I am up against social services, but I will never give up. 

I try to make the most of life but I'm so worn out from the years when there was hardly any support. I need new joints but have been told I have to wait till I'm 60. I am 58 now so have to endure the agony for 2 more years at least. I am in agony every day and cannot take the usual drugs that other people take because of my Crohns.


A few months ago my doctor started me on Morphine for the pain. It has helped but for how long is any ones guess. I had to buy myself a mobility scooter because now I can barely walk and can only stand for 5 minutes at a time. I don't know why life has had to be this hard.

.

I also think all carers lives would be improved if the government stood by their promises to help us. They need to increase carers allowance to bring carers out of poverty like they promised in their election manifestos.  They need to ensure that all carers get the minimum of 48 nights per year respite like I had to fight like hell for and ensure that holiday breaks are available for us.  We save this country millions of pounds a year and now the government have made us feel like benefit scroungers and made us feel like second class citizens. Its outrageous.

Eve of the Millenium - Lyndsey, Pat, Linda, Mum and Debbie

M. Finally Pat you have a wonderful family. How would you have coped without them?  

I wouldn't have! My mum had a stroke and now it looks like she may have Alzheimer's. Mum is upset because she thinks she's letting me down because she can't help me anymore. She has been my rock over the years and like I told her, she has done her share and she needn't worry because we have Harmony Care now and she knows how wonderful they are.

"Here's to life!"

 
It’s not easy. But hey, we are alive and kicking and I am a stubborn woman.

I like a pint of Guinness now and then and I like a good laugh. You can’t spend your life being miserable can you? When I go I want to go out in style. I may not be able to walk far at the moment but when my joints are fixed, watch out world, you won’t know what's hit you.

Thank you for sharing your story Pat. You are a truly amazing woman. 





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