Our world changed in the blink of an eye on 4th January 2009.
We didn't know back then exactly where our journey would take us...or how long it would last.
My mum Caz, aged 42, suddenly collapsed at home. She was rushed to hospital where we were given the devastating news that she had suffered a grade 4 brain haemorrhage. Sadly following on from Mums bleed, she suffered a massive stroke that devastatingly left mum with severe irreversible brain damage.
Mum was critically ill and she battled for a number of weeks with the interventation of surgery and had to have 3 major operations including a craniotomy.
Approximately 2 weeks after my mums collapse, my dad was made redundant, a blow we definitely did not need. My dad, who was constantly by my mum side, decided that the time would be used to help and support mum with her recovery. He kept her positive, spoke to her and tried all he could to help her fight. We sought to find what support he would be able to get and were disappointed that there was no financial assistance available to him.
During this time my dad was a tower of strength and support for my mum. However, at this point, Mum was our only priority.
It was decided that after 3 weeks at John Radcliffe Hospital in Oxford, Mum would be moved back to University Hospital Coventry and Warwickshire whilst still on life support to be closer to home, as we were completing the journey to Oxford on a daily basis.
Mum amazed us by eventually waking from her coma, as we were told on a number of occasions she possibly wouldn't, so had prepared ourselves.
We were so relieved when mum did wake, but mum wasn't the same person she was that went to sleep. Mum was paralysed from the neck down and couldnt even hold her head up, she had also lost her speech, she needed 24 hour care, but we were hopeful.
We stuck together as a family and had amazing support around us from the rest of our family and friends.
It was decided that Mum would be admitted to Royal Leamington Rehabilitation hospital to receive physio and speech and language therapy. Mum started to show signs of recovery, she was saying some words, learnt to hold her head up, eating a couple of bites of food, however she was still unable to move or communicate on a consistent level. 6 months later we were advised that her recovery had platoed and there was nothing further they could do. My dad was devastated, he wasn't prepared to give up on her, he was with his love, from morning until night and even then it was a struggle to get him to go home. When at home, he didnt sleep, Mum was constantly on his mind. During this time, he was unfortunately still out of work.
At the beginning of September, we had to make the heartbreaking decision to place Mum in a young, disabled care home, Castel Froma, aged 43.
Our family home, could not provide Mum with a safe, comfortable environment, along with the 24 hour round the clock care that she would require. We never in a lifetime imagined that this would happen to us and the guilt we felt at having to make this decision on mum's behalf, left us feeling empty. Mum seemed to settle in well and we always promised her that we would all one day be reunited at home but she needed to work hard on her recovery and fight.
My Dad, who had worked since leaving school, a hard working & proud man, started to feel the pressure of their financial situation and it started to take its toll. We decided to do a fundraising evening to be able to help in the short term. It was a brilliant success and helped tie him over for a few month's. Finally with pressure from us, he decided to apply for Job Seekers allowance. Once his application was complete, he was called to an assessment. When he went for his assessment, he took along with him my mums full medical report, along with his own sick notes (his gp, had signed him off with stress and depression), however, upon the completion of his assessment, he was advised that he was fit for work and needed to find employment. We were also advised that because my dad was living in a mortgaged property, our family home, he would not be entitled to any housing support.
Mum continued with her routine, still requiring round the clock care at Castel Froma in Leamington Spa, with my dad visiting on a daily basis travelling from Coventry. Around 18 months after mum's collapse, my Dad returned to work. He struggled with his working hours, being up at 5am to be in Leicester for 7am, he would come home at 4.30pm, pick up my younger sister Jodie who was only 9 at the time, head over to Castel Froma to spend time with mum, whom he missed dearly and finally get home around 7.30pm. He would still cook us dinner and make sure Jodie was all ready for school in the morning.
This became our life.
Mum was learning to do a little more and we were hugely encouraged but we knew deep down that Mum would never fully recover. She battled infection after infection but still fought.
My dad never and still to this day has not lost hope. The love they have for each other, can be seen when he walks into a room, eyes light up just at the sight of him.
Our world was rocked again in July 2011. Mum had another bleed on her brain and was admitted to University Hospital Coventry and Warwickshire. We were so relieved that no further damage had been done to her brain. Once it was established that she was stable, Mum returned to Castel Froma.
Our family home had memories of Mum everywhere, it was a hard place to be without her there. Mum was very family orientated, our house always had family over (anyone who knows us, knows how big our family is). With Mum away, our home became a base for which we returned to after spending all the time we could with mum. It was harder for my dad being there without her. He missed her beyond words but kept positive with hope that she would one day be home.
Mum amazed us all with her determination and showed small signs of improvement. She was an absolute inspiration and our eyes filled many times with pride. Mum had endured numerous operations since Jan 09 and will continue to experience many procedures to ensure that she remains comfortable and pain free. To watch Mum sing, say words, eat normal food orally - not through her pegg was simply amazing. Despite her poor health, my mum smiles and laughs on a daily basis, her sense of humour and determination, along with my dad's strength and encouragement, gets her through the day.
Mum watched me, the oldest daughter, get married in November 2012 and was delighted to become a Nanny in June 2013, something we all thought she would never be here to experience.
You can see the love she has for her little man, everytime she sees him.
Our Rio's arrival brought so much positivity to our family.
My Mum and Dad finally had a little boy in their lives after having 3 girls!!
Sadly, my dad's financial situation did not improve despite working all the hours he could, in October 2013, we lost our family home. Every family memory..... gone. My dads heart broke all over again. He was a broken man. My Dad had worked all of his, life paid all of his taxes, to end up here! We all started to wonder how much more one person could take. He seemed to be drowning. He had always tried to be strong for us but this devastated him, he felt he had let Mum down.
My Dad and Jodie, moved into rented accommodation but my dad was only existing, he wasnt living, he was a shell of the person he was before mum became ill.
In January 2014, he found a rented property that had a downstairs bedroom and wet room and decided to go for it in the hope that Mum would be able to come home for weekend visits.
In August 2014, mum didn't seem to be her usual smiley self. Mum was vomitting and unable keep water down.
Dad knew something was wrong.
On the Monday afternoon, he left work early with a gut feeling, knowing something was very wrong. He persisted and requested that she go into hospital.
Mum was admitted to Warwick hospital at around 2pm the following day and we were told she had an infection but as she was dehydrated, they were struggling to be able to take blood to confirm where the infection was.
Mum was very breathless and this was a concern. She was immediately put on antibiotics and finally around 10pm the doctors were able to find a vein.
My dad returned to the hospital in the early hours of the Wed to get an update from the doctors but at 10am, we received the dreaded call that we needed to get to the hospital urgently, Mum was seriously ill and she was being moved to Intensive Care as she was not responding the antibiotics. They were still unsure where the infection was but her kidneys were starting to fail.
The doctors were not hopeful and did not want to put Mum on life support should she get to that stage due to her current disabilities, we were numb.
A scan finally revealed that her kidney was blocked by 3 kidney stones that caused the infection, it had lead to sepsis. We were petrified. My dad perservied and pleaded that should she need life support, she should have it. She deserved a chance, we were her family and we knew her better than anybody, we couldnt give up on her after the battle that she had fought. The doctors listened and said they would give her 24 hours on a ventilator and the rest was up to her.
Thankfully, after a procedure to drain her kidney, she started to respond but she was still in a serious condition. Mum was smiling the following day and amazed not only us but the medical team with her battle and recovery!!
My Dad continued to work and visit. He was drained, not only emotionally but physically too. He wasnt the same person without my mum constantly by his side. He had faced some many barriers and closed doors throughout his journey, he was struggling.
Wherever he turned for help, he was turned away.
In November 2015, my dad was given the option to take voluntary redundancy and it made him think.
The time was right for MUM TO COME HOME!!
He was tired of existing, he was tired of working his fingers to the bone to miss mum every second he was away from her. He wanted to spend quality time with mum, without the pressure and routine of work, home, sleep, visit. He wanted to be with his soulmate every minute of every day. He didnt want to be lonely anymore. We started to make enquiries about the process to bring MUM HOME.
For the first time in 7 and a half years, I could see a sparkle in my dads eyes again.
Thankfully, Mums care at Castel Froma had been funded by CHC (Continuing Health Commission). After making a few phone calls. We were advised that it would be possible to bring mum home and she would require an assessment. We were told the process should take weeks not months. Finally, there seemed to be light at the end of the tunnel. The darkness was finally clearing..
My Dad went to the Citizens Advice Bureau to find out what financial support would be available and the process on how to apply. Again, all positive, he was told what he would be entitled to claim for and the amounts he would receive. After careful review, it was deemed that he would be financially stable and would be able to support mum on her return home.
After reviewing all the information and discussing with CHC the process and short timescale..... the time had came, it was time to welcome Mum home.
My dad took voluntary redundancy at the end of November.
Before Mum was taken ill, Dad would go all out at Christmas, our house would be full of fairy lights and christmas trees, Dad hadnt celebrated christmas since Jan 2009. This year, it would be different, he had not only got his sparkle back, he had got his christmas spirit back, knowing the love of his life would be home in the new year.
New year came and went, we were no closer to bringing mum home. We were receiving limited info from CHC and when we finally did, the process didnt seem to be as easy as we were originally told. It was far more complicated than anticipated! My dad started the process of completing his benefit applications and submitting them. The barriers reappeared, as Mum wasn't living at home yet, he would be unable to receive any payments until she was. Without a date this was gutting. Then it can take upto 16 weeks for the application process to be complete. How is this fair?? He was crushed yet more determined than ever to continue with the process. My dad called everyday to be told different information by different people, frustrated doesn't even cover it. How can you plan for somebody who has been in a care environment to come home without any income? There is also no dedicated support worker or department that can assist in cases like this!
Days turned to weeks, weeks turned to month's and we were still in the dark as to when Mum would be home.
Mum was starting to get aggitated and fed up as she was overjoyed at the prospect of coming home.
On the 3rd June, mum finally came home. To say it was emotional it an understatement, after a long and hard 7 and a half years away, she was home.
To see Mum and Dad together, permanently still brings tears to our eyes. To see the love and bond they share despite their battle is beautiful.
Mum has settled in amazingly at home. She is the happiest she has been since she became ill. Mum still hasnt regained any movement from her neck downwards and still requires 24 hours round the clock care, however, Mum is already showing signs of improvement, she is communicating more, asking questions - which she never did before!!
To see them together, melts our hearts, she lights up whenever she sees him or hears his voice. My dad is now my Mum's fulltime carer and a stirling job he is doing!!
Our battle isn't over yet.
My dad has not received any income for the last 8 months.
We were told that it would take weeks.
When mum came home, my dad submitted all of his forms to claim his entitlements. He has been receiving housing benefit but no council tax support, PIP allowance, carer allowance etc. We finally received from help from The Law Society, who delivered a gut wrenching blow.
Without having Court of Protection, they are not entitled to PIP allowance, if you don't receive PIP allowance, you can't receive carers allowance. Without this income, my mum, dad and younger sister cannot survive!!!
If we had initially been told this by the Citizen Advice Bureau we would have prepared for this. There is so much red tape it is impossible to know what the correct information is.
We have therefore set up this page.
It's our turn now to try and support our parents who have been on such a difficult and tough journey so far and overcome so much, we can't let them give up now!!! This is the time where they should be enjoying each others company and living life again, not constantly worrying about the financial pressures they currently face!
To apply for Court of Protection costs a large amount of money, once this has been obtained (approx 12 weeks), it can take upto 16 weeks to apply for this payment. It can then also take up to 12 weeks to apply for Carers Allowance. We are facing 6 months we NO income!!! Our benefit system does not help those that desperately need it, despite us all working and paying our taxes. There are so many barriers in the way and the processes are never simple.
We want to help raise enough money to enable my dad to apply for Court of Protection and also to provide financial stability until they start to receive this payment.
This will take a huge amount of pressure off my dad and enable him to focus on caring for my mum . Despite experiencing such dark times, my Dad has always been there for us, no matter what he is facing, now its our turn to be there and help him! He, along with my Mum, didnt deserve any of this and we hope we can make life a little bit easier for both of them.
As a family, we have already received a huge amount of support from our family and friends and without this, we would not have got as far as we have, we will always be eternally grateful. We are finally in a place where there is light at the end of our very long dark tunnel but just need that little extra bit of help to get us to the finish line.
Please share our page as much as you can. If we raise more than our target, we would like to also make a donation to Headway, as this charity is very close to our hearts.
With all of our love and thanks,
Rachel, Rebecca and Jodie