Remembering Rosie

Beloved mummy, mum, nanny, big sister, mother-in-law, aunty, great aunty, dog nanny, surragate mummy, dear friend, travel buddy and everyone else who had the privilege to meet her.

Unfortunately, our lovely mum passed away on the 21st April having suffered a bleed on the brain on the 30th March.

Most people knew mum as having a heart condition, one that she had from a child when she had contracted Rheumatic Fever which had gone undiagnosed, she had several major heart surgeries over the years, including open heart surgery to enable her to carry her youngest child, Joanna (me).

So, I guess we all thought that it would be mums heart that would take her from us and maybe if it had we could except the loss a little easier, we had after all lived with this fear all our lives.

However, for those who don’t know, Mum suffered from very bad restless leg syndrome (RLS) and unfortunately at times this was so bad it would very much limit her sleep due to the restlessness, and she would wonder around her house trying to alleviate the symptoms throughout the night, unfortunately due to this she would then fall asleep standing up while pacing and cause several traumas to her head.

Sadly, on her last RLS fall it caused accute internal cranial bleeding on the right handside which resulted in her being paralysed down her left side and spending 3 weeks in hospital, however by the 2nd week she had started to show signs of improvement, and the sharp, intelligent and extremely witty Rosie was starting to shine through once more, but unfortunately started to deteriorate a couple of days before she passed away due to her injuries and being in hospital she devastatingly died of hospital associated Pneumonia, something that since Covid is less common, as essentially her being in hospital killed her.

This has I am sure you understand devastated us as a family, the sad fact is if she hadn’t had RLS, there is no doubt she would be with us today; the strong and independent woman that she was, who was very much looking forward to traveling more this year and celebrating her 80th birthday with her family.

We tried everything we could to get her the help she needed, we paid for a private neurologist who gave her patches which were for about 10 months a great success, at the time she was also referred to the sleep clinic, but they never saw her in person, and we continued to fight for her, pleading when we could to anyone who would listen. Of course mum being mum demanded her independence (I mean why wouldn’t she, she was Rosie after all and fully capable doing anything she put her mind too). To support and help her maintain her independance, we installed a lifeline alarm system, changed the layout of her flat, even installed cameras so we could check on her, but it was a constant worry for us, when would the next fall happen and when would the next call from the alarm people or from her.

However, since the start of this year the patches unfortunately started to not be as effective for her, so we went back to the private neurologist who again wrote to her GP to again refer her to be seen by the sleep clinic and for them to admit her for tests, as nothing had been done, despite her having RLS for several years. Unfortunately, however she never made it to that appointment which was due a week after her passing. So sad that we fought so hard for her to get help, but people were not taking us seriously, despite in the last year her having to visit A&E several times with head wounds and a previous bleed on the brain due to her RLS and falling.

Randomly, mum and I (Joanna) would come to have some of our best conversations in the waiting room in A&E and it became our thing to take a selfie together to share with the family and she always had a smile on her face and a thumbs up to show that she was ok, even if she did have a ‘comedy’ bandage round her head, but it was ‘our thing’ and maybe a bit of the Kelly sick sense of humour.

Unfortunately, on this occasion it was just one too many falls. She wasn’t a frail old lady (and she would have slapped you if you ever tried to accuse her of being), she still drove, attended her local classes, and had a zest for life and living it to the full. Sadly, we do actually have videos of her having multiple falls as we installed cameras in her house to try and show people what she was going through most nights and upsettingly we have the fateful fall on camera and can see her hitting her head on a door frame.

Hopefully by reading this you can see that we tried so hard to get her the help that she so required but we failed to find the help she and we as a family so desperately tried to get for her.

As part of her funeral arrangements, we would like to ask people should they wish to donate to RLS- UK charity, this is a small charity and one she was a member of. Their intention is simple; raise awareness of this syndrome and to educate people on how debilitating it is and was to her and ultimately lead to her sad and untimely death. Also, another charity close to mums heart was Marys Meals, which serves nutritious school meals to children in some of the worlds poorest countries and a charity that mum has been a supporter of for a very long time.

Finally, please do not feel like you have to donate, our mum taught us throughout her life to be kind and treat everyone how you would like to treat others (she even wrote this in a letter to the 3 of us the night before her last major heart surgery in 2010), so please even if you just become more aware of this condition would mean a lot to us as family.

Mums funeral will be on the 2nd June, please message any of us for details.

Much love, her 3 loving children, Marie, John & Joanna