On May 13th 2023, the life of my then 84 year old mother, myself and my girlfriend Margo was turned upside down for the second time in a year.
On June 24th last year my younger brother Michael passed away after a long battle with heart and many related health challenges. In his last months he would say how he wanted to reach his 50th birthday and to go on his long planned holiday to Corfu. He passed away just over three months after his 50th and just three days after he returned from his much anticipated holiday.
While we all knew Mike was seriously unwell, as I'm sure is often the case, due to his continued return after so many hospital stays over the last few years, as a family we had gained a false sense of security. While knowing in the recesses of our minds that one day he wouldn't, we kept on thinking he would always return. Ultimately his untimely death and how quickly things deteriorated came like a bolt from the sky. While we all felt the pain of loss, as she had lived with Mike for the last few years, his passing hit my mother especially hard.
Over the year that followed, we grieved, but also pragmatically made the best of it. Margo and I had mum regularly to stay with us in London for a couple of weeks at a time. We, or mostly just myself due to Margo's work, would go to stay with mum in Cheshire and occasionally we would also leave her alone, but not for long.
Despite her increasing frailty with AF and a chest problem called Bronchiectasis, which she had suffered since she was a young woman, and which was increasingly hard for her to deal with - mum was still fiercely independent and still enjoyed and needed some time alone. Though more than a week and she started to worry and fret. Whilst tiring faster than she used to do, mum would still try to weed the garden like a woman possessed, despite my pleas to the contrary. She also always wanted to help prepare dinner (cutting courgettes or mushrooms or stirring whatever), after which she nearly always would fight me to do the washing up. To say that mum was and thankfully is still a determined lady, is a big understatement.
Then on the 13th of May, Life changed - in a Stroke.
I was having a few days in London and was due to return on the following Monday, and mum was due to visit the local shopping mall called Freeport with her great friend Althea. At 84 like mum, Althea still drove, and was due to pick mum up at 2. Althea arrived at the bottom of mums steep drive and waited. The front door to the house was open but mum failed to emerge. Althea waited and waited and after 15 minutes, she understood something was up and that she needed to scale the drive to find out. Due to the incline of the drive, this was a feat she and many of mums aging friends had not attempted in a long time.
As Althea entered, mum was sitting on the sofa and was unresponsive. She wasn't asleep but had no obvious signs of a stroke either. She was just sitting with a blank expression, but it was obvious this was serious. Althea tried to to call 999 but in a bit of a panic she just couldn't work the phone. So she went out to get help. After getting no response next door she had to go back down the path where luckily she saw the daughter of Jim and Rachel, the neighbours who lived next door but one. Tiffany shouted her mum Rachel who quickly went up to the house with Althea climbing this steep drive for the second time. Rachel did manage to work the phone and around 20 minutes later the paramedics arrived - and straight after, Rachel called me.
The call came as a shock but in a way it was no surprise.
Mum had her health issues and both with Michael and her, for the last few years, I was always nervous about leaving them. Mum had a twisted bowel in August 2019. I was in London when she called me to tell me she was in pain - so I managed to call an ambulance for her which took her into hospital. I got hold of my brother who was out, and he went to be with her.
The doctors initially said it was nothing serious, likely trapped wind, and would sort itself out over the following days. Fortunately they kept her in just in case. I made the trip north early the following day. By Tuesday, they had realised it would not rectify itself and they urgently needed to do a bowel resection (take out the twisted part and rejoin mums bowel - which was a big operation at 80).
To cut a long story short, while some of the time it was touch and go - with infections and with her heart racing and jumping around like Usain Bolt - mum pulled through. It took 6 weeks for her to recover sufficiently for her to return home, and a few more weeks to get even close to normal, though properly weakened. Recovery for the elderly takes longer and is more difficult than for the young, and a bowel operation is quite the ordeal at any age, but at 80, its quite the trauma.
Aside from the immedate medical emergency, 6 weeks of hardly walking is akin to having 6 months of inaction for someone getting on in years. In mums case, someone who was fit and vital beforehand now would struggle with walking in general and in getting up the path and climbing the stairs steadily became increasingly difficult, especially as it became clear she had AF, which is an irregular heart beat. At the peak she now took 16 tablets a day. While essential for her ailments, these also had side effects which made daily life difficult.
She did not give up, but I for one could see how mums fitness and general health had suffered - and then came COVID-19. On top of everything, this vibrant and formally social person, was able to get out to see her friends less and less.
Then to Mike. His countless ambulance and hospital trips is another story which I will write about another time, but put them them together and this meant getting 'the phone calls' had become pretty routine for me. Always a shock but rarely surprise.
This time, however, it really was different. Life had changed, in a STROKE, literally.
While still on the phone to Rachel, Althea and the Paramedics - I quickly packed a case and immediately jumped in an Uber for Euston Station. On the way, whilst buying the ticket, I realised how fortunate I was. This was the day of the Eurovision Song Contest in Liverpool which inconveniently was also the day of one the national train strikes that were occurring at the time. I was fortunate because had the call from Rachel come even an hour later, it would have been much harder to get quickly to see mum.
I was able to get one of the last trains North getting as far as Stafford. Thankfully my friend Phil agreed to pick me up and to take me to the Royal Stoke University Hospital at Newcastle, which I was later to find out is reputed to have one of the best acute stroke wards in the country.
On the train I managed to speak to the Dr who informed me that it was a serious stroke and was life threatening, and I should get there as fast as possible. So naturally I was thinking the worst.
Arriving at the hospital just after 7 pm it was indescribable to find out she was still with us but she was clearly in a bad way.
The doctor showed me the brain scans and around 50-60% of the left side of the brain was gone, or at the least, severely affected.
I could squeeze mums hand and she could faintly squeeze mine, with her left hand only. Her right side was paralysed. Spending the first three days and nights with her, mine was a different kind of agony to hers. Mine was the agony of someone who knows whatever the future, if your loved one dies, or if somehow they survive, life would never be the same again - and it would be some time before I would know which of those two options it would be.
Having numerous chest infections, mums temperature, oxygen, breathing, blood pressure and heart stats were jumping around like crazy, before stabilising and then jumping around again, and again. Though, after fighting the fight, she got through the first days and weeks.
Seeing every little bit of progress was just amazing. I don't have children but I can imagine seeing each step forward mum has taken would be like the first steps, words or hand prints of a child. The term role reversal springs to mind.
Three weeks later she was transferred to The Heywood Community Hospital near Tunstall in Staffordshire for rehabilitation. This is only 10 minutes from home rather than the 25 for the Royal Stoke.
Now, as I write this post it is 10 weeks after she was first admitted. Mum is recovering slowly, and considering what she's been through, she is doing well. Despite liberal and uncontrolled use of the word 'Yes', wagging of her finger and hand, and some fantastic facial expressions - mums communication is extremely limited. The lovely Brenda who was in the the next bed - that is until mum was moved into a side room for getting C DIFF, which is highly contagious - was only able to say 'No'. Put them together and one couldn't help but smile. Both were communicating in their own ways, and both were doing incredibly well to make their needs met, despite their super frustrating restrictions.
Mums initial total paralysis of the right side eventually and for the last eight weeks, she has been able to walk, though with support. However she is only able to move her right hand and arm ever so slightly. This must be extra frustrating for her as she was previously right handed. Ask anyone what mums superpower has been over the years and they would most likely say communication, closely followed by being a great friend and style and colour co-ordination. So, while mum is very much aware of what's going on, being robbed of this capacity and knowing so - is just horrid. In a different way, it is just as horrid as the Motor Neurone disease which cruelly took my father in 1999.
Despite all what has happened, mum is a fighter. Her determination and personality still shine through all the things that restrict her. The staff at the fantastic Heywood and Royal Stoke Hospitals (mostly fantastic - but more on this another time) all seem to think the world of her, as do other patients and their families. And, just as my darling Margo answers the question 'what am I going to do with you' with 'Love Me', which I do, all I can do is Love Mum, which I do with all my heart.
So why this Lifeinastroke.com site, blog and YouTube channel.
Writing this post it's 10 weeks to the day from when I received that fateful call. And what a 10 weeks it has been. Other than three separate days when I had to go home to London, I have visited mum once or mostly twice a day (only visiting once when I was able to arrange other visitors for her). That is well over 100 hospital visits in 10 weeks. It's been as exhausting as it has thought provoking, emotionally charged, and an absolute privilege to have the time to spend time with my mother, even in this challenging, very sad, but also hopeful situation.
As I have had a tendency to do, I talked to everyone possible about stroke, their experiences and learnings. Other patients and their friends and families; nurses; healthcare assistants; cleaners and catering personnel; and the doctors; consultants; physiotherapists; ocupational therapists: and occasionally; the speech and language therapists who are in such short supply. I've also gotten to know the security staff, administrators and porters - and I have enjoyed speaking to and learning from all of them. Yet, as a family member of a stroke survivor - much of the time I felt like I was navigating blindly down a raging river.
I was trying to navigate for mum, for Margo and myself, and yet despite trying hard to learn what was needed and what was to come, the river was throwing us around with hidden rocks and whirlpools everywhere. In short, I felt quite hopeless, and despite the good intent of so many of those professionals I had encountered, I felt powerless and very uncertain about what was ahead.
There was uncertainty everywhere and in many cases, it felt like we were left to fend for ourselves. It was also super clear that STROKE had such a huge effect, personally and on the very many people touched by it, that the potential to tackle stroke much more effectively, for all concerned - was simply massive.
For two weeks back in June, Hudson, my Brothers 26 year old step son and my mums step grandson came to stay. He came to see Rena, as he grew up knowing my mum, and to help with some work that was needed at the house. Hudson had a stroke 2 years ago. There is a good chance it was due to taking the Astra Zeneca Covid vaccine a few weeks earlier, though it is not 100% certain. Despite outwardly looking fine, he was left with fatigue and sight problems - which we discussed at length with those in and around the Sneyd (Stroke) ward.
Due to these conversations with Hudson, who had now returned to London, Margurite, a senior manager who had worked in stroke for over 15 years, and who we had met one day walking into the cafe, invited me to a meeting to do with young stroke survivors. The meeting was to discuss how the Trust was seeking to enhance the services it provided to the 10-15% of stroke survivors who were classed as young. I was amazed that you meant under the age of 65.
The meeting was eye opening, with about 12 people attending, mostly from the multi-disciplinary Staffordshire stroke team, but also included were three remarkable young women, and one of their carers.
They all spoke passionately about their stroke experiences. They talked of the stroke itself, their recovery and their interactions with the NHS and other members of the stroke healthcare community. They mentioned how in some cases they were not ready for the different forms of support when it was offered, and that the language and communication of those offering that support was in some cases quite overwhelming. These survivors, who were still clearly with long lasting effects, also mentioned the effect their strokes had on their employers. One employer was very positive but the other was negative in the extreme. After 15 years of employment and what was thought to be a close relationship, after she had a stroke and was clearly going to be out of action for a while, this employer dropped her like a stone.
This all got me thinking further about the extent that stroke touches society.
Whilst walking out of the meeting I was then able to chat with the consultant who had attended, called Phil. We stood in the car park and chatted for 20 minutes, talking about how stroke medicine had advanced to the degree that mortality had dropped from 30% to 11% in the past 15 years and how this remarkable achievement had created an even larger problem. That of ongoing care, rehabilitation and support, when patients are medically stable and can leave acute care such as at Ward 127 at The Royal Stoke to enter rehab facilities such as the Sneyd ward at The Heywood, to when they return home, or as is often the case, when they enter full time care.
The spark of the idea.
While I had been thinking, learning and experiencing many things to do with stroke in the previous few weeks with that meeting and the discussion with Phil afterwards. the idea for Life in a Stroke started to form. So much so that I even thought of and registered the name that very evening.
More on how the vision for Lifeinastroke came together tomorrow.
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