Yesterday was my mum’s funeral, the end of a long journey that started many years ago. Its initial stages were played out behind the scenes, out of sight, deep inside my mum’s mind. Unknown to any of us, friends or family, the 100 billion or so neurons in my mum’s brain started a countdown. These neurons in her brain threw out neurological branches that connected to more than 100 trillion points, allowing for thoughts and memories to be formed and recalled. Slowly, and completely silently, this number started to drop. With no fanfare, an incredibly awful and utterly incurable process began that would only begin to show itself years later.
When it did show itself, it did so relatively innocuously. It was the odd repeated question, the occasional double take, the subtlest of shifts away from engaging in conversation.
The science behind Alzheimer’s tells us that the areas of the brain most commonly affected early on are those that are used for learning and planning. I remember patiently sitting with my mum trying to explain to her how to use her new mobile phone. The simplest instructions seemingly lost in the seconds following the conversation. In retrospect I can see the folly of trying to explain, and reexplain, something new to my mum. That I failed to mitigate my own behaviour, let alone expectations, to allow for the early onset dementia is both something I regret, and something that makes me feel embarrassed.
How unequipped I was to support my mum in those initial stages leaves a deeper sadness in me now than the ending of her story. She was preparing for one of the hardest journeys of her life, and I turned up with no shoes to walk in, maps to direct me or rations to sustain us. I was woefully ill-equipped.
In retrospect, there was still so much left to celebrate at this stage and instead I was too focused on the immediate problems and challenges in front of me. The fixation on the next steps trying to ‘fix’ these problems blinkered me from spotting the wider landscape of where we were, how we got there and how much further we still had to go.
I remember asking questions about gardening and composting and getting encyclopaedic answers disguised under a subtle humble demeanour of a women with a life time of experiences not used to being asked to share them. The lack of notebook and pen in hand resonates strongly now to illustrate my own failings at the time to appreciate the delicacy of these thoughts that could dissipate at any moment.
By the time I spotted the severity of the journey ahead, my mum had been walking solo for years. Everyday a confusing challenge, walking a journey no one would chose to take. Each day trying to guide herself with sheer willpower through an ever-changing landscape.
To try to support her I took my first significant step in equipping myself for this journey. This was to read Oliver James’ book ‘Contended Dementia’. Although far from the miraculous saviour text some of its proponents make it out to be, it did set me off in the right direction. It was from this that I accepted that parts of my mum’s memory, and what makes her who she is was slipping away. I set about ‘relearning’ my relationship with my mum. This was beyond tiring and involved unlearning a lifetime of habits. My questions soon ceased to be part of our conversations. They were instead replaced with an ever-changing melody of chitter chatter which at times danced as freely as the topics that passed through her mind, while at others were strictly kept to subjects I knew to garner a positive reaction. I learnt the joy of hearing about parts of my mum’s life that were previously never mentioned and my curiosity about the patchwork of her earlier life grew. Even then though I struggled to prevent my focus returning to the ever-growing list of things we couldn’t do or talk about.
In retrospect, if I could change one thing from this whole journey, it would be to spend more time at each stage celebrating all that was left of my mum – the good, the bad and the utter complexity in between.
My mum had a fiercely proud personality, often contradictory in its nature, and a stubbornness that any mule would be proud of and in retrospect she plodded on this journey as any mule would – proudly, quietly and without complaint. She would never ask for help and would scorn the suggestion if anyone ever offered it.
And yet, in my mum’s mid-stage of dementia, I feel like I learnt new ways of interacting that allowed me to better help her. By just being with her and holding a conversation that was not threatening and didn’t highlight the missing memories I felt like, for a short period, I could carry some of the extra weight for her on this journey.
At this stage I began to spot the crucial role that emotions played. If I had a positive interaction with my mum, then I could tangibly see how these positive emotions lived on much longer than the memory of the actual interaction. Equally, if something distressed her it was clear that the anger, or hurt, or confusion would long outlast the initial problem. This moved me onto what I think of as the relentless optimism stage. Regardless of the reality I found a positive moment – the new flower that had just sprung in the garden, the fact that my wife was pregnant, that the sun was shining. The smallest of things resonated.
Again, I wish I had turned some of this optimism and positivity to all that she still had to offer at this stage instead of just distracting from all she couldn’t do. Whether or not this would have been possible I don’t know. I do know that I wish I had tried harder.
Later I would read that this importance of positivity wasn’t just my experience but one backed up by studies. One lead author of a study concluded by saying that “our findings should empower caregivers by showing them that their actions toward patients really do matter and can significantly influence a patient’s quality of life and subjective well-being”. It did for me. For some months, a year maybe, I could visit my parent’s house and let my reality melt away and interact with my mum wherever she was at that time. In her mind, if she was milking cows I would comment how good the fried breakfast was waiting for us. If she was worried about where her Dad was I quipped that I was sure he would have a good story to tell over dinner. If I didn’t know where she was in her mind I would look out of the window and say how special it was to be here at this time of year.
This is not to say it wasn’t incredibly hard work. Each visit I was constantly second guessing what was happening and trying to steer conversation away from any cracks in my mum’s memory road. I suspect though that this was just nothing compared to either her experience of living with the disease or that of my Dad’s experience living with her and for many years being her primary carer.
In the final year or so, it became harder and harder to muster these positive emotions. Verbal conversation became a less useful tool and suddenly I felt like I had slipped back to square one – back to being an unwitting bystander to my mum’s journey. At times I found ways around this. After the birth of my son, her grandson, we would sit together with her doting affection and my son performing back a series of giggles and smiles. It is hard, even after years of suffering from Alzheimer’s to not be cheered by the rapturous laugh of a baby. In the final months though we would more often than not sit in silence.
As these final months ticked by, I watched the seasons slip from one to another outside her care home window. This alone was enough to fill me with sadness to think how she once lived her whole life outdoors surrounded by animals. She was now sat in a thermostat-controlled room – I wasn’t sure of much at this stage, but I knew this was not right, and not what she would have wanted.
With the passing of the seasons so the number of neurons and connections continued to quietly drop. Basic functions disappeared but still, at times, there was the unmistakable facial expression or look that was uniquely my mum. In these last few months I spent more and more time feeling awkward and unable to help her. My weekly visits had slipped to every other week and sometimes longer and as a result the progression of her symptom became more pronounced between visits. By the end I would helplessly sit with her unsure if she knew if anyone was with her not.
Coming one time into the uncomfortably warm care home I found her slumped sideways on the chair. A member of care staff who was spoon feeding her explained to me that she had lost control of body positioning. Her eyes were glazed and focused on nothing in the distance. She weighed just over 40 kilograms. The length and severity of the journey she had been on had taken its toll.
Two days later she passed away.
When people now ask me how I am, I say I’m OK; that I feel both relieved and sad. A mix of emotions. But the more I think about it, the more I think this is the wrong question. There are much more pertinent questions to ask. How have I been for the last 8 years? How have I been throughout this long journey? At what point did I feel that the essence of my mum left leaving her body to keep on the journey? When did grief start? What have I learnt over the last 8 years? Do I feel guilty for not having done more? Do I feel proud for doing what I did? How did all those who loved mum struggle in their own ways to interact with this journey?
And then, and only then, a little for the here and now: how does it feel to be setting off on this next stage of life, on my own journey, without a mum that had, up until now, been a constant in my life?
At this stage, I’m not really sure.
The social distanced funeral and the need for primeval hugs
My Dad’s funeral was last week. It consisted of me, my four siblings and a vicar, all stood 2 metres apart in Gloucester Crematorium. The vast majority of people watched on through a live stream as the hymns and the eulogy echoed around the near empty room. The rows of empty silent pews speaking volumes about all the people who knew and loved Dad over the years who couldn’t be there.
After the funeral I have spent some time trying to answer people’s unimaginative question, “how was the funeral”? And I think this is the nearest I have come to an answer so far.
Crucially, both for coronavirus, but also for understanding what happened, there was no physical contact at the funeral at all. The vicar welcomed us with a polite nod of the head and my siblings and I all gave half smiles and weak waves back.
At the end of the service there were no hugs, no shared tears, and no sharing of marginally inappropriate anecdotes at the boozy wake. There wasn’t even the usual socially awkward British handshake (or my personal favourite, when one persona goes in for a handshake and the other a hug) from friends from Dad’s distant past. Instead there were just awkward good-byes and splodges of hand sanitizer as the next cask was wheeled in for the next small group of mourners. As we all disappeared off to our own separate lives even the warmth of sun felt inappropriate. It was a beautiful warm day and I knew the next time I would speak to my siblings it would be through a Zoom call or a shared meme on WhatsApp.
To me it felt inadequate, a poor fraction of a funeral for a man that burst at the seams of life. I wanted a festival for him, I wanted to hear first-hand about how he used to rally cars, how he spent hours preserving ancient machinery, how at one point or another he would have poured everyone there a glass of desert wine and watched expectantly for their reaction as they took the first sip.
Instead, the inadequacy compounded a hurtful sense of the inadequacy in not being able to be there to support my Dad in his final weeks of life. Instead of holding his hand in those final weeks I counted down the hours and days left of his life just 20 miles from the hospital where he rested. I still feel disproportionately grateful to the palliative care doctor who told me she sat and held his hand while she spoke to him about steam trains.
Although I answer honestly when I tell everyone “I’m fine” it is, I think, important to acknowledge that with death comes a form of psychological pain. And ritual and contact normally plays an important role is helping us all deal with that pain.
While people deal with this pain in their own personal and socially specific ways, I read that everyone uses the same regions of the brain to process this pain. To one degree or another it’s a shared experience. When we come together to mourn a death remarkably similar thought processes are occurring in all of our brains.
Crucially though, these processes are the same parts of the brain that are used to process physical pain. To deal with this, most of the world has developed a form of ritual that helps release endorphins to dampen this pain – in our society this is around the social gathering and shared embraces at a funeral.
We know that endorphins dampen, incredibly effectively, our psychological pain. That is why at funerals hugs are shared so freely when in general in British society we normally avoid that close embrace of a hug. It’s thought that these endorphins produce an opiate-like analgesic effect but just much stronger (one study suggests 18-33 times the effectiveness). We have evolved this behaviour as social creatures over millions of years. As a behaviour pattern it really isn’t dissimilar to the grooming of primates. Cuddling, with its stroking, patting and even the occasional leafing through the hair (that’s a joke) is the human form of primate grooming, and is designed to create and maintain our relationships and to soften pain. Anyone parent will know the impulsive response to hug their child equally when they fall over as when they are upset about something.
In an increasingly isolated world that has become more and more physically distanced (I had a cousin watch dad’s funeral from New Zealand), these rituals of gatherings around births, deaths and weddings are more important than ever. Sometimes a decade could pass and these are the only occasions when my extended family will have got together. These are our backstop to maintaining the loving relationships that sit as the foundation blocks to personal, family and social well-being.
That’s why I feel a funeral could and should be a time to gather and share stories of love and shared history but perhaps more importantly to be there, physically, for each other. Instead it feels like the coronavirus not only stole the last part of my Dad’s life, and indeed also the small but important role that we his children could play – to be there physically for him, but it also stole so much of the ritual that we all rely on to help us through the mourning process. In these socially distancing times, it feels like we are being asked to go against the most primeval of instincts embedded within all of us. To gather, to give and receive a hug and to share our memories.
One of the most comforting thoughts now is the promise of a gathering when “all this is over”. I know that this is unlikely to happen any time soon but the prospect of it is something to hold onto. To really say good-bye to my Dad I want warm ales on a hot day and long anecdotes about narrow-gauge railways all shared by the unusually diverse group of friends that my Dad managed to hold onto. But most of all I want a moment when everyone is deep in conversation and the booze is flowing that I can turn to someone who knew him and loved him as much as I did and hug them, and to mutter softly how much he would have loved us all being there together.
Until then I am making do with photo-albums and the incredibly lucky sensation of constantly having two children climbing over me and to be sharing this all with the most loving wife.
I know in this sense I am lucky and my heart breaks for all those in comparable situations going back to empty houses. If you are still reading this I urge you to take the time to reach out to those people living alone – I’m really OK and they might well not be. This unprecedented time isn’t just changing the basics of the modern society that we have grown so use to, but also the slowly evolved rituals that we rely on more heavily than most of us realise. There is little that can replace the importance of a hug but just letting people know you’re there for them is also important.
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