A disrupted rhythm of life, and a new normal

And just like that, one day you are walking hospital corridors, the next you are running up and down stairs. Yes, my wonderful wife Jane came home from hospital last week. It hasn’t been quite the smooth ride Bianca*, the Sister-in-charge of Jane’s last ward promised. In fact, you might say, since last Monday, at times, it has been a bit of a nightmare. Assuming of course, that you had slept and might perchance to dream.

Today is only day six following her discharge home, and so it’s early days of course. We both believe that Jane’s memory will improve, and her disorientation and confusion will diminish by having the next steps of her rehabilitation and recovery here at home. Care at home, or closer to home, when appropriate, will always be better than inappropriate care in hospital. Currently, across England, there are over 14,000 people each day who are medically fit to be discharged but who remain inappropriately in a hospital bed. They do so because care closer to home or in their home is simply not available to them.

I’m fortunate as, in the short term, much of what I do as an NHS Chair, can be undertaken by working from home. I’ve a great team too! It means in these early days of Jane’s recovery at home, I can be here to help her when necessary and keep her safe. She is doing well. That said, night time and sleeping are proving problematic, hence the notion of a nightmare above. At times, Jane has struggled to get to sleep, or to stay asleep. For the past six nights she has been restless to the point of agitation. Things will improve, but right now the disturbed sleep is certainly taking its toll.

Apparently, the longest time someone has gone without sleep is 11 days and 25 minutes. It was a world record set by the 17-year-old American, Randy Gardener in 1963. For my part, I’m beginning to feel like a dad in the first few weeks of the arrival of a new baby in the house. There were close to 600,000 live births last year, which will account for a lot of crying babies and disturbed nights for parents. I have been there, so know what it can be like.

Most adults need between seven to nine hours’ sleep each day to stay healthy. Young people probably need more, and older folk like me, often need less. Interestingly, you should not need to set an alarm to wake up in the morning. If you do need an alarm call, it is more likely than not, that you are not getting enough sleep to keep you healthy. I never use an alarm clock, and I rarely go past 4.30am, before waking up.

The effects of sleep deprivation are well researched, and the loss of sleep doesn’t have to be in the extreme form above to have a negative impact on someone’s wellbeing. In the short term a lack of enough sleep or disturbed sleep can result in irritability, lethargy, fatigue, memory problems, mood changes (particularly depression), and in some instances, raise a person’s blood pressure.  

Many years ago now, I attended an interesting lecture on the possible impact of ‘out of kilter’ circadian rhythms on a person’s mental health. Circadian rhythms ‘tell’ the body when to sleep, wake, and eat. In turn, they are governed by a group of neurons called the suprachiasmatic nucleus, located in the hypothalamus in the brain. It is the group of neurons that translate cues from a person’s environment into directives for the body to act upon. Such cues include light, noise, temperature and so on. So, for example, darkness can result in the production of melatonin, the hormone that promotes sleepiness. It is possibly these circadian prompts that are a little out of alignment for Jane at present. I also think, however, that it has been the disturbed rhythm of our lives over these past seven weeks that have also contributed to our current challenges.

Jane was fortunate (not sure the that is the right word) that her subarachnoid haemorrhage did not impact on her motor functions, and her speech; but it was still a serious brain injury. It was an injury that paused our joint life clock, and the familiar rhythm of our lives. There is a ‘new normal’ for us to embrace and nurture, but as we do, we will make the most of every day. Yesterday, Jane wrapped up warm and we went for a walk in the snowdrop-bedecked gardens of Lytham Hall. Something neither of us thought possible a week before. There truly is only one life, and we should all try and live it to the very best we can. We have made a start on our new normal and recapturing the rhythm of our lives.  

 

 *Two days after Jane was discharged I went back to the ward to pick up a Fit note for Jane, Bianca said ‘I thought you might have looked a bit more tired…’ – I just smiled and said thanks for the sick note.

Dr Who: observations from the anthropologist’s apprentice

One of the outcomes I treasure most from my PhD was my introduction to cultural anthropology. I had an academic giant of a supervisor. He allowed me to stand on his shoulders and get a very different view of the world. He opened my mind to so many possibilities, particularly what it might mean to be a person. I explored what factors make people do the things they do, what they believe in and how their experiences shape the way they behave and interact with others. That said, I’m not a ‘qualified’ anthropologist.

However, in our house, I’m the anthropologist, and Jane is the apprentice. It is a long running private joke that comes partly from the different ways we have of viewing the world. I have a ‘film track’ running in my mind that is constantly fuelled by observing what is going on around me. Some of the things I see get instantly discarded. There are other things I observe which linger in my mind, and it is these that make me pause, question or reflect. It is a more nuanced form of ‘people watching’ that exchanges superficial fantasy for a possible analysis reflecting someone else's reality.

This way of being, (or rather my way of being), sometimes surfaces in me asking Jane if she saw, or heard, of felt something I might have just observed. More often than not she will say no, and I will nearly always respond with ‘well you are not a trained anthropologist’. And we laugh with each other as we both know, however much I might posture, neither of us are. Critically, observation is the key factor in cultural anthropology studies, whether this happens through being as an active participant, or as a non-participant observer.

Now during the time Jane has been an inpatient in hospital she appears to have honed her observation abilities and her anthropological analytical skills too. Last week, following her successful shunt operation Jane was moved from the high care ward to a step-down neurological ward. My word what a difference a short corridor trip can make. Now despite what follows here, Jane continues to make progress, albeit it slowly. Once again thank you to all the readers of this blog who have steadfastly supported us both.

So, the spacious 4 bedded high care ward, the calm, and the quiet, has long gone. Replaced instead with an overcrowded (19 beds in a 16 bedded ward), noisy, hot, and often a seemingly chaotic environment. There is little privacy. It took me 3 days to get Jane a bedside cupboard and she is still eating her meals off a tray, on her lap, as she lays in bed. The hospital pharmacy has allegedly been unable to source her medication for over 48 hours. I have now fetched her long term and necessary medication from home. 

As bad as some of the conditions are (and I will pursue my concerns somewhere other than in this blog), what is more disheartening are the apparent attitudes of some of the folk working on the ward. For example, Jane, drawing upon her growing anthropological knowledge and skills, observed that none of the doctors caring for her introduced themselves while conducting the daily ward round or when undertaking a procedure. Nearly 12 years after Kate Granger started her #hellomynameis campaign, I found this both sad and hard to accept.

For those readers who don’t know of Kate Granger, she was a medical doctor who was also a patient living with terminal cancer. During her inpatient treatment, she found it frustrating that so many of the health care professionals caring for her failed to introduce themselves. Health care professionals introducing themselves to patients is not just common courtesy, it is something more fundamental. Kate Granger described such simple introductions as the ‘first rung on the ladder to providing truly person-centred, compassionate care’. Absolutely. It is the bedrock upon which effective approaches to active listening and therapeutic conversations can be built.

Please don’t get the wrong impression. I know, understand, and deal with the extraordinary pressures facing the NHS every day. The underlying factors causing these pressures have all been captured many times by folk who can describe them more eloquently than I will ever be able to do. But for me (and more importantly, for Jane) it’s just not about poor buildings, aging equipment and a depleted skilled professional workforce: its the lack of kindness in human interactions that matters. Kindness always matters and in the health care setting, being kind toward those you are caring for can positively impact upon a persons sense of self and aid their recovery.

Kindness to others, kinship and relationships have long featured in cultural anthropological research. Indeed, my PhD examined the professional and non-professional relationships between GPs in a so-called quasi health care market. Many of the anthropological studies have consistently noted that the factors that promote and foster kindness includes providing people with the opportunity to observe kindness of others. I think that an overcrowded neurological ward, where everyone can observe and hear the conversations of others, provides a great place to test out this idea.

Shedding a tear (or two) at the sound of silence

Last week, as dry January came to an end, I saw a social media posting that caught my attention. It was a picture of a hand holding a glass, in which, was a generous measure of a dark malt whisky – the caption read ‘Hello darkness, my old friend’. Just for clarity, it was not my posting, I’m still alcohol free, and will remain so until Jane comes home, and we can celebrate with some champagne. After all she has been through, I think it will be at least two bottles at that!

The caption is a line from Simon and Garfunkel’s classic song the Sound of Silence. I was never a great fan of Simon and Garfunkel songs. Perhaps if I say I thought the Rolling Stones (I Can't Get No) Satisfaction released at the same time, was more my kind of music, you will perhaps understand why. However, time passing can sometimes mellow opinions, and the social media post did strike a chord. So, I listened to the song once again. You can too, here. The words resonated.

Paul Simon was writing about a very troubled time in the US and the worlds history - not that the US troubles have got any better or the world has become a better place either. Whilst some 60 years later, the song possibly still reflects the current zeitgeist, the song’s lyrics resonated with me for very different reasons, more of which in a moment.

Now, some of this blog’s readers will recognise that silence is often used in therapeutic conversations. Sometimes as a prompt to someone to say something about the issues they are facing without interruption. Or to enable the person to process their thoughts and feelings without distraction; and to reflect and gain clarity on possible ways forward. In a therapeutic sense, silence can be a powerful and enabling approach for the therapist to draw upon. However, it seems to me that in a non-therapeutic context, silence is often viewed a as space to be filled somehow.

For example, why do so many folk have their tv on, even when they are not watching it? We are just as guilty. As a couple, we love music, listening to it, making music and apart from Taylor Swift, we share a similar taste in music. However, whilst Jane always drives with her music playing, I like to drive and talk. She has her music headphones on while she runs, I walk in mindfulness silence. Billy, our parrot hates silence, and will chatter away all day to avoid it. Sometimes he makes sense other times he just whistles the blues.

And be honest now, how many of us have fallen out with a loved one where the result is a stony silence between you and them. A silence that can last an hour, a day, or even longer. I know I have. At such times, I have sometimes been accused of sulking, or not wanting to address the cause behind the falling out. Whatever the reason, sooner or later someone needs to speak to break the silent deadlock. This type of silence can be corrosive. But it is not the only type of a silence that can be damaging.  

Since Jane has been in hospital, I have encountered silences that can be equally challenging. You have probably had similar experiences. You know that silence that becomes all engulfing as you wait for a promised phone call that never comes (in my case, from the staff on Janes ward). And the associated silence, that’s punctuated by only of the sound of an unanswered phone ringing, as you finally give in and ring the person who promised to ring you.  

Then there is the silence that comes with its own soundtrack. In the 32 days since Jane’s brain bleed, I’ve watched everything on tv I wanted to and much that I didn't. I soon turned to asking Alexa to play my favourite music instead. So, she obliges, and I sit of an evening listening to music I have already heard many times. 

Paradoxically, this produces a different kind of silence. In that silence, I have found that for the first time in a long time, I’ve heard loneliness knocking at my door. Please rest assured dear reader; despite shedding some tears on more than a few evenings recently, I’ve sent loneliness packing. I thank you all, for the support you have unconditionally given Jane and I. It is appreciated, although you will perhaps never know how much.

Jane has endured her own sound of silence this past week. A promise of a life affirming operation, only to be dashed at the last moment. Not once, but twice. This was a frustrating silence and pause in her recovery. Thankfully, yesterday Jane had her much needed operation. It was an anxious afternoon. I was able to take her to the operating theatre, tell her I loved her, and sealing our love with a kiss.

What seemed like a long 5 hours later, she returned to the ward. Jane held my hand, opened her eyes and gave me a smile. It was a special moment, and I gave her a welcome back kiss. Everything went as planned with the operation, and this felt like a big step forward on Janes recovery journey. I was silent on my drive back from the hospital, but it was a truly grateful silence.        

Now I try to never judge or condemn others. Unconditional positive regard is my watch word. But I also have my failings, see above. It seems to me however, that those who could reassure and/or confirm what might be happening to folk like Jane in these moments of high anxiety, are too often unable to do so. I don't know why. On Jane's ward the busyness is something to behold. I have sat there as the ward phone has rung and been left unanswered. I don't believe for one moment that those who have been caring for Jane have intentionally remained silent. I guess in the moment they have other priorities to address. That said, our experience has made me reflect on how my own NHS organisation communicates with service users, carers, families and colleagues. As I have found, the sound of silence, whatever the reason, is never going to be right or helpful.

Memories are the key not to the past, but to the future

Goodness it’s February 2nd already. January has come and gone, and what a month that was. This past week has been sprinkled through with memories of the past, some of which were good, others were rather more challenging. It has been 5 years since Brexit. It’s hard to identify what has been good about Brexit, well certainly not in this house anyway. Sadly, Marianne Faithfull died aged 78 last week. She was born in the same place as me, Hampstead, in London, albeit 8 years earlier. She was the 1960’s ‘it girl’ (younger readers please ask your parents what this means) a singer and an actress. For a while she was the muse and partner of Mick Jagger.

Although she died in 2016, there was another Marianne (Ihlen) who was the muse and partner of Leonard Cohen. He wrote a song in 1967 which although written for ‘his’ Marianne, I think captures the spirit and zeitgeist of the time. Listen to it here. All 4 of these folk featured one way or another in my teenage years.

More poignantly, last week we also remembered the liberation of the Auschwitz 80 years ago. Last Monday (27th January) Along with many others I’m sure, I lit a candle and placed it in our front window. It was a symbolic shared testament to our solidary, respect and remembrance for all those killed in the death camps. As our King said on the day, ‘the act of remembering the evils of the past remains a vital task’ – we cannot let todays generation or our future generations, ever forget the most wicked act of inhumanity against others the world has ever known.

I have been to Poland a few times. Mainly to Warsaw, which I discovered last week is now one of the top 20 vegan cities of Europe. I have never been to Krakow, the nearest city to Auschwitz. It just 30 miles away and today is a popular tourist destination. For many reasons, none of which I wish to go into here, I have never wanted to visit Krakow and by its association, Auschwitz. Jane went last year and was able to visit Auschwitz and the other concentration camps nearby. Her visit had a profound impact on Janes sense of self. Watching the memorial services this year convinced me that I should make that trip. Jane has promised to come too.

And travel memories featured this past week as well. I spent a lovely couple of hours with Jane going through the photos of our travels together. There were over holiday 6000 photos on my phone (the curse of camera phones I guess). What made the time together special was Jane being able to recognise the various places and tell me stories of what we did and saw on our travels. Given her short term memory is still not where it should be and confusion still reigns supreme, this was a positive and very welcome glimpse of my Jane.

Her confusion caused consternation last week. In the middle of the night, Jane decided she was being poisoned and being held prisoner by a group of people she didn’t know. So, like anyone finding themselves in such circumstances, she rang Lancashire Police. They were confused. Jane was confused. The ward staff were confused when, after tracing Janes call, the police contacted the hospital. Her phone was confiscated, explanations provided, and we all got back to sleep.

The following day Jane had no memory of the incident, and to be honest we had a bit of a laugh about it all. However, consequently, and with her permission, Jane’s phone is now locked up overnight. Unfortunately, Janes current treatment regime is still not helping her. This being the case, she is scheduled to have a permanent shunt fitted this coming Tuesday, and that should be a big step forward for Jane and her recovery journey. Keep her in your thoughts and prayers please.

It has been a journey of discovery that’s for sure. Descartes’ philosophy that the mind and body are conceptually distinct has underpinned much of western culture and medicine for centuries. Illnesses are thought of as being either ‘physical’ or ‘mental’. I have long advocated that there can’t be a separate category of illness that this idea suggests. I’m with the World Health Organisation in that there is no health without mental health. This blog is not the place to explore the brain and what we might think of as our mind. However, as we have found out, a bleed on the brain, can have a huge impact on the way our mind works. Thankfully, in Janes case, her memories are still there, and we will make new ones soon for sure.