This afternoon I visited a couple, husband and wife in their 70’s. The wife called me because she is worried about her husband’s memory loss. Over a cup of tea and some really nice home-made biscuits, a story unfolded of more and more blank moments, him giving up taking responsibility for their finances and not being able to engage with his clients any longer. I could see that this was causing a lot of stress for them both.
Whilst he was trying to tell me about his general health, his wife told him “that is not relevant”. I encouraged him to tell me everything, which I could see was not what she had planned. We chatted about how he felt in general and what is sleep pattern was like. It transpired that he has a problem with having to get up at night to go to the toilet, sometimes up to five in one night. This is something new. He also then mentioned that he lost about ten kgs in just the last year. The red lights started going on for me. Not dementia lights…
urinary tract infection lack of sleep weight loss depression
This is a lethal combination of events, which all four together would cause an impaired homeostasis. This could present with “symptoms” very similar to that of dementia, and if it goes untreated will cause damage in the long run. Dementia is diagnosis by exclusion, and these four issues are but a few of the typical things that need to be eliminated before a discussion about dementia is entertained. The same goes for delirium, which often present with the exact same behaviours as that of someone living with dementia, and often is wrongly diagnosed.
I could feel the relief in the room by the end of our conversation. Not that I am saying he has NOT got dementia, but given what I have heard, it would be unlikely that his other problems are not the cause of his state of mind. In fact, a fifth red light went on when I asked him what he does with himself every day, and his wife gave the answer “he is bored, and that is driving him out of his mind”. I asked her to repeat what she said, and the penny dropped. If you don’t use it, you lose it….and while I strongly recommend that the expertise of a medical professional is sought, I also highly recommend a few immediate interventions:
1 Find something meaningful to do – they live walking distance from the beach, go and pick up some plastic off the beach every day to also get exercise. 2 Get involved with charity work – it will take your mind away from your own problems and see the bigger picture. 3 Do a gratitude journal every day, writing down three things for which you are grateful every night before you go to bed. 4 Eat healthy foods and drink one glass of red wine every night. 5 Find a time and a place for quiet time/meditation every day, or listen to soothing classical music for at least one hour every day. 6 Socialise – go out, meet new people, visit with friends.
It is so simple, and yet we are so reluctant to work on our brain health. I am very excited to see how he progresses….
The word integrity is often bandied about with little regard for the severity of its intent. To be a person is usually considered as doing the right thing even when there is no witness to one’s actions. For me, integrity goes much deeper than one’s doing. In fact, it goes right to the core of our Being. To BE with integrity means to be whole, integrated, that there is integrity in the way that one is constituted. In this sense it is more than just a value, it implies cohesion, being connected on emotional (psychological), spiritual, intellectual and physical levels.
To live a life of integrity is not just about doing the right thing when nobody’s watching, it is about Being in a way with one’s Self, with Nature, with the Divine/Soul/GodMind or whatever it is that is at the core of our Being and connects us to everything else on this planet. Integrity is to honour first and foremost one’s own Being, that which is part of the Greater Good. (I feel that I should write all these words in capital letters, as they refer to something above, beyond and inside us that we cannot know. It is indeed that great Mystery.)
To live a life of integrity is to be fuelled by the desire to be part of the Whole, to be inspired to make the world a better place, regardless of how big or how small our sphere of influence is. It implies and calls upon us to be true to our Selves, to be kind to others, and to be mindful of the impact that we have on each other and on nature. It demands of us to be constantly in tune with the Infinite. This is a tall order, and very few of us get it right all the time. But it is so important that we start with the way that we treat our Selves, in the simplest of ways. To live with integrity it to be first and foremost kind to one’s Self. To respect your Self in everything that you do – from the way that you make yourself a cup of tea, to be mindful of what you eat and how you treat your body. I think it is only then perhaps possible to exude integrity. Integrity is not a learned behaviour, but rather a state of Mind or a way of Being in and with oneself that comes with growth. It is a long and arduous journey.
En route we connect with others. It is integrity that determines the nature of our Connection. Integrity however cannot be exercised if it is not integrated deep into our way of Being-in-the-world. Then, and only then, will we see the sacredness of the human Spirit in every person, plant and animal. Let’s go there, together?
This misty morning is filled with bird song that floats through a veil of soft, damp mist that hangs in the crowns of the pinetrees. A soft breeze moves the Tibetan bells to tinkle their faint notes. It is Sunday, a day that always holds a special charm. Sometime a special nostalgic sadness of childhood memories…
Going back to school hostel after a weekend at home filled me with terror and longing and immense sadness to be away from my home. Memories of church services that felt like they will never end, Sunday school that went by in a blur of disbelief. Family meals with tables moaning, brimming with leg of lamb and roast potatoes and soetpatats and green beans with more potato and onions, cauliflower with cheese sauce and white rice with gravy. And pudding with custard. Quiet Sunday afternoons with the piercing sound of sonbesies and pigeons calling “mamma kyk vir Pietie”.
Our worlds were small town small. A circle of family friends were always visiting. Some Sundays with friends were spent with braais that carried on till early evening, lazy days lying on the lawn listening to stories that we as children were mot supposed to hear.
I was always aware of a sense of wonderment – as a child I had no idea what it was or where it came from. Now as I grow older, I am so grateful that somehow in my plattelandse upbringing, this sense of wonderment and enchantment was instilled in my Being-in-the-world. When I left South Africa to go to Europe a dear friend said that I must make sure that I lie flat on the ground with my camera to take pictures of the magic that lives and grows close to the ground.
The first time I saw a Fritillary growing in a field I was overcome by this sense of wonderment, this perfect gift just waiting for me to discover it. The first time I saw the Mattehorn, the house that Mozart was born in, heard the cry if a Fish Eagle, saw a newborn baby. The firsts of our lives that build this library of moments that form our memories and our stories, that one day we will be able to draw from, or not, when we are sitting alone, waiting for this life to run its course.
But what if we lose our memories? Bollin talks about “the enduring mystery of human consciousness”. I often wonder if all those moments of enchantment and wonderment are lost in the hazy fog of dementia. Our memories of our wedding and the birth of our child, the smell of fried onions and the sound of the church bell on Sunday morning, the feelings if excitement from a kiss, the warmth of a hug. When we can no longer articulate or narrate our memories, are they gone? Is there an empty vacuous space behind the sad expression? I think not.
That, to me, is part of the enduring mystery of human consciousness, which is never affected by dementia. But how will we know this and learn more about this if we do not take the time to spend time with old people who are living with memory loss, it we hide them away and just pay our dues with short visits bringing biscuits and flowers? I think for many people it is just too frightening to contemplate that “there, but for the grace of God, go you and I”. Or more to the point, “we are all on our way there…”
We reason and rationalize, we say things like “oh she does not really know who we are” or “she had no idea that we visited” or even worse “she is no longer our Mom”. We protect ourselves from facing our Selves, from truly and deeply contemplating our own journey that might lead us there. To the room with a bed and chair. And our memories.
Michael Pollan starts his “How to change your Mind” with an Emily Dickinson quote: “The soul always stand ajar…(,ready to welcome the ecstatic experience)”
The soul should always stand ajar. Think on that. How often in life do we close our Souls, and our eyes and ears, to the enchantment and the wonderment of this thing called Life. How often are we too busy to stop and listen, turning our gaze away from that which we dare not see or engage with because we cannot bear the feelings that might come with seeing.
To connect is to open the Soul to that Divine knowing. To leave the Soul ajar is to allow Life to beam its light into the dusty corners, to show us where the magic might happen as a cobweb shimmers in its mysterious appearance. To be in harmony with all of the wonderment of the Universe and truly be alive, right here, right now.
The Dalai Lama holds that “the idea that the brain creates Consciousness is a metaphysical assumption, not a scientific fact”. The brain does not create Consciousness. We are the creation of Consciousness. Leave your Soul ajar. Fill your day with wonderment and enchantment, for one day soon you might wander through the passages of your Mind to find that she shelves are sadly empty. Build conscious moments and memories, because “consciousness is never affected”. It will be your companion forever.
You’ve seen “new stories” about “the latest” in dementia care. No surprise when it turns out to be a bit of technology, or an intervention that many of us have known about for years. It is not an innovation, or real news. It seemed to be news, or innovation to the editor of the TV show, or the newspaper. So, it makes the cut into the show. It is just fashion. Not innovation.
New recommendations have come from the WHO about dementia risk reduction which support what we’ve been saying for a long time – be moderate with alcohol, take exercise, don’t smoke, manage blood pressure and cholesterol, eat well, keep a healthy weight, manage hearing loss, treat depression and diabetes. Now this advice is backed by research and the health organisation with the highest global authority. Doing these things to delay risk is not “news” – the news is that the World Health Organisation has done the research and is lending its weight to spreading these well-known strategies. Everyone needs to know this.
So why has there not been much about the WHO guidance in the media? It’s because it is rather dull, really. Not as much fun as running a restaurant with people who have dementia, or a choir of people with dementia or throwing a kindergarten in amongst them and filming what happens. These things are so interesting they’ll get a whole TV series to themselves. The fashion in dementia broadcasting is for quirky exposure, or celebrity endorsement.
I think the important question to shout from the rooftops is “How are we going to implement the things we already know?” This is a serious question for policy makers and politicians. We haven’t implemented what we already know. We’d rather have people with dementia paraded before us and be put through the emotional wringer with them. And that lets the broadcasters say, “Now we’ve “done” dementia for this year.” There’s no room in the schedule for public health information. We’ve been distracted and it has been displaced by infotainment.
I got ambushed by a condescending man in the audience after I had talked about this at a conference recently. I had been pointing out that everyone is talking about singing for the brain as therapy and making the obvious point that there’s nothing about singing in the WHO guidelines. I had been clear that art and singing are vital for life itself, and I wish they could cure everything including cancer, but to label them as “dementia therapies” distracts the media, policy makers and politicians away from those things for which there IS evidence. That’s why they’re not in the WHO guidelines. They are a valuable distraction but that’s NOT what “therapy” is supposed to mean. In the coffee break this rather haughty man who seems to have influence on a national scale swished past me to say that people sitting near him thought I was dismissive of music.
His mistake. I don’t succumb to hit and run side swipes. I kept him with me for long enough to repeat that what I want to dismiss is the idea that singing is on a par with the things recommended by the WHO. It’s a nice (perhaps even vital) distraction for people with dementia and their carers. It is a fatal distraction for the people who should and could be doing more. Advocacy organisations should not be setting fashions. They should be working to make people implement what we already know.
Today my parents and I visited my Mother’s cousin. Lenie is 87 and recently had a stroke. She now lives in a so-called “frail care facility”. In spite of the fact that I have worked in and with facilities like these for the past 24 years, it still moved me to tears.
Lenie is the daughter of my grandmother’s brother, Oom Koos. They lived in Hoekwil, and Lenie was a missionary in ex-Rhodesia where she met a man who broke her heart. She worked in Saasveld when she came back from Rhodesia and cared for her ageing parents. Lenie was always the spinster cousin – very tall, soft-spoken, very religious, sharp sense of humour. We grew up with her soft presence in our family. She worked for the church and lived a simple life with a few good friends. Over the years we would always stop at her house on our way through George.
When we saw her in May of this year, I could see that Lenie was getting frail. She was still as tall as always with her beautiful hands and long fingers. Her hair set the way I can remember it from when I was a boy of four or five. Her little tinkling laugh, the smile. She was now walking with a four-wheeler, and enjoyed showing us how she could swing it around to become a chair. I asked her about the food at the home (she was living in a commune-like setup with four other ladies) she just looked at me with a look that said “I am not going to tell you…”. Lenie was not one to complain or gossip, ever.
When I heard that Lenie had a stroke, I decided to take my parents to see her. The Care Home is an upmarket establishment (meaning it is not cheap) and belongs to the Church. It is clean. Clinical. Lots of staff and fancy furniture, wide passages, plastic flowers. It is quiet on the Friday afternoon, staff milling around. We go to the Frail Care Centre that is access controlled by fingerprints of the staff. Everything about it shouts hospital – nurse’s station, trolleys and walls filled with information posters about strokes, diabetes, dementia en blood clots. The staff are friendly and calls me “Oom”. (It is the Platteland after all.)
Lenie is at the far end of the centre – a small room with a hospital bed and a wooden dresser that has photographs and personal belongings. Above the bed is a chart with her information – Magdelena Hendrina Gerber (Miss), date of birth, next of kin, allergies. And a photograph of her obviously taken after she had the stroke. In a chair next to the bed sits Lenie. I can see in the flicker of her eyes that she immediately knows who we are. There is a recognition, a soothing smile, a deep connection. She has lost a lot of weight, her hair has not been combed and there is porridge from the morning on her chin above the few long gray hairs sprouting from a mole. She can no longer make conversation, but here and there a word comes out. Her answer to how are you is “old”, with a deep frown. Followed by “tired”. She looks so strikingly like my maternal grandmother that my heart aches from the recognition of family bonds. She looks in my eyes, long, lovingly, sad, lonely, tired, peaceful. She has made her peace with the world. She is waiting to die. My mother says “Lenie, I am also on your path…”
Being in the same room with Lenie, my mother (78) and father (84) I am so aware of the mortality, the vulnerability, the journey towards the end. This will most probably be the last time that I see Lenie. I am deeply moved by the knowing. I feel helpless and in awe at the same time. Here we are, practically saying goodbye to someone who has been a part of my life for 53 years. Someone who represents a part of my bloodline, someone who has known me from the time I was in my mother’s womb, who has always only been kind and loving to me.
We drive back in silence. I know what my parents are thinking…who will go first. In Heidelberg we go and visit the graveyard to put a colourful Mexican flowerpot filled with succulents on my grandparent’s grave. Their grave is surrounded by the graves of people we knew so well – we laugh in recognition, share stories as we remember them when we read then names on the tombstones. I remember standing next to many of these open graves at funerals of people who we knew well. Friends. And I cannot help but think again how difficult it is to contemplate our own mortality. As the last rays of the sunset touch the canola and wheat fields, we drive home in silence. I cannot help but feel deeply touched by the day’s events, the vulnerability, the wonderful memories, the knowing that it will all come to an end maybe sooner than later. As evening sets in we go for a pizza. Sitting opposite my parents I am so grateful for time together, for the connectedness of belonging, of being able to celebrate life, and for the opportunity to have seen Lenie one more time.
Every time I visit my parents (which is never often enough) I am aware of the privilege of having both my parents alive and well at the age of 53. (They are now 78 and 84). Married for 57 years, holding hands whenever they walk anywhere, not only because my Mum is a bit wobbly on her feet, they have done this since I have become aware of their presence. The manner in which My dad takes care of my Mum really amazes me. A mechanic, never one for fussing or being fussed over, he makes her tea the way she likes it, helps her with patience and grace. And opens the car door for her every time they get in and out. Every night he makes them an egg on toast, she gets a slice of toast with Peanut Butter and a cup of tea.
Today I visited the graves of my maternal grandparents. My Grandfather loved gardening, having spent his life in the Knysna forest. He knew how to cultivate Proteas, and for the last years of his life had the most wonderful vegetable garden. I sat on the side of their grave and pulled out all the weeds that were growing between the pebbles. An immense sadness wrapped itself around me. They were such an incredible part of my growing up. I spent almost every school holiday with them. I learned about cooking, milking a cow, slaughtering a chicken (which really freaked me out), the importance of family. My Grandfather was kind, always soft and gentle. My Grandmother was funny, always making everyone laugh, told the most outrageous stories, recited things from her childhood and loved having a sneaky cigarette with me. Sitting on the side of their grave filled me with such gratitude. Being at home in my parent’s house makes me even more grateful for the fact that I am still someone’s child. That I can be looked at in a way that only a parent can look at you, be aware of unconditional love, of a bond that goes beyond anything else on earth.
Family dynamics play such an incredible role in our lives. Whilst many of us might have experienced our childhood as less than amazing, growing old gives us the opportunity to make amends and to connect. I do believe that as we grow older we must try to get closer to our parents and siblings. Somehow I believe that we have chosen them for good reasons, that we are meant to learn from and grow with them. In the many years that I have listened to the stories of people living with dementia or memory loss I have too often come to the conclusion that family dynamics can have an enormous impact on our ageing trajectory. (At one point I considered doing my PhD research on “The prevalence of dementia in dysfunctional families”). Most families have a dysfunctional streak, and mine is no exception. However, the lifelong battering of a wife or a toxic relationship that was endured for thirty or fourty years can lead to a disconnect that presents with all the signs and symptoms of what would be considered ‘dementia’.
The generation of our parents have not had the privilege of marriage counseling, coaches or psychotherapy. They stuck it out. They put up with it. Maybe drank a bit too much, stayed at the golf club longer and longer, had an affair or just worked all hours. But they stuck it out. Then, when they are forced to retire and can no longer escape each other’s company so readily, the pawpaw hits the fan. The toxicity rises to the top like the frothy scum on sour milk. And one day, lo and behold, it starts bubbling and the lid shoots off, leaving a right royal mess. “My Dad hit my Mom in her face”, or “My Mom just lashed out at him with the kitchen knife”. And everyone is hysterical, blaming “the dementia”. Easy. After a few conversations and a bit of prodding someone will let the cat out of the bag. The relationship was always toxic. There was no love lost between them. Their marriage was always rocky.
One has to ask the question – is it “the dementia” that caused this behaviour or did the stress of the relationship cause “the dementia”? We are finely wired Beings, our Souls are intricately tuned to the perfection of nature. We are Connected to the cosmic rhythm, the ebb and flow of the tide, the waning and waxing of the moon, dawn and dusk and coming and going of the seasons. We are not separate from this perfection. If our Souls are out of sync, if we are not in tune with the Infinite Wisdom of the universe, things will go awry. And they do. The wiring in our Systems will be affected, negative synaptic connections will inflame and eventually take its toll. We know enough about the brain now to know that it is not just beta-amaloyid placques and tau proteins that cause what we call dementia. We need to take care of our Minds, we need to protect our Minds from toxicity, not only of the chemical kind (which is by itself a huge threat to brain health) but also of the emotional and psychological kind. We need to detox from anger, resentment, hatred, jealousy and all other negative emotions for our brains to stay healthy. We need to grow new neurological pathways through meditative practices – walking, singing, meditating (in whatever form works for you), listening to classical music, spending quiet time in nature, sleeping at least eight hours every night for hormones to be released that will restore us, and be with people who love us. This is essential, imperative, not negotiable if you want to save your Mind and keep your Soul intact.
A few days ago I wrote that it suits the scientific world to not acknowledge the Soul. In fact it suits a lot people, because if they had to acknowledge that every living thing had a Soul they would have to treat these living things with a bit more respect and dignity. I am now beginning to think more and more that it suits us to think that there is no cure for or cause of dementia, simply because it seems impossible to take responsibility for our own ageing. We travel far and wide, spend billions, do the most ridiculous things to avoid simply acknowledging that we need to start honouring our Souls. Just that. And if we do that, we will be so much more mindful of what we eat, the stuff we put on our hair and skins, the cars we drive, the relationships we tolerate, the friends we keep. (Do you ever think of the harmful ingredients in lipstick – especially if you kiss your kids with a lipstick that contains lead? Or the shampoo or expensive cream that is not forced by law to reveal what ingredients are used to make it?) Yes, we can all become paranoid about this. Or we can start a different conversation, a Mindful one where we learn to respect our Selves. Where we honour our bodies and Minds and embark on a new journey of ageing. And where we honour our ancestors, our parents and grandparents, repairing relationships and healing wounds that will grow new neurological paths through neuro-plasticity, brain reserves that will enable us to grow old as independent, healthy people, contributing to the world.