“They’re mad as hell”.

https://www.nytimes.com/2019/07/30/style/theyre-mad-as-hell.html

This is a topic that I have often raised, yet I have found few who would engage with me on it. “They’re mad as hell” is the title of the New York Times article. And it makes so much sense to me.

Have women changed over the years? Are they suddenly more sensitive to the predatory advances of misogynistic men? Are they suddenly more liberated to speak out? Do we have more radical feminists amongst us? Why is it that women, for the first time in history, are taking such a public stand against men who abuse them?

That is not the only intrigue for me. What really is of critical interest to me is what happened to the millions of women who did not find a voice? The ones who were at the receiving end of years and years of bullying, sexual, emotional, physical. The ones who were never brave enough to speak out, who were beholden to the patriarchy, who had to keep quiet because they were disempowered? Can it be that many of them “are mad as hell?”

Madness is not a term that I would ever use. Being mad – as in being extremely angry – I even find difficult to use as a metaphor. We all know how women were labelled through history first as witches, then hysterical (given frontal lobotomies) and then as hormonal. I have a theory that the abuse that so many women suffered for many culminated in dementia, which not too long ago would have been classified as”madness”. Too many women were silent for too long, ending up paying the price in their last years when the disconnect has become pathological. The hurt, anger, resentment, humiliation, heartbreak, suffering just became too much. A broken heart can have the most devastating consequences on the Mind. Let alone abuse, abortions, miscarriages that were never aired in a therapeutic environment.

I also believe that it is never too late to start a therapeutic process of healing, contradictory as this may sound to some after my previous post. Thanks to the neuroplasticity of the brain we can develop new neurological pathways, neurolinguistic programming can create new narratives, empowering us to rewrite our own story, adding new chapters and healing characters. It is never too late to at least start some healing in loving relationships and supportive environments.

I have seen too many women living with dementia (many not diagnosed, but labelled as such) who I instinctively knew from the moment we met that there is an untold story behind their gaze. I have seen it in their touching me, I felt it in the way some of them melted into my bear hugs, sensed it in their glance as I walk away, that there is an untold Tolstoyian novel of grief and sadness locked up, a storm, torrid waves of anxiety and pain that fuels their state of being-in-the-world. And whatever it is, that something drove them to where “they’re mad as hell”.

We need to start giving a voice to those silenced women who stoically kept a stiff upper lip and got on with things. We need to encourage our Mothers and Grandmothers to find expression, to shout, to demand to be heard and seen. It is time.

Therapy?

One of my all-time (and many) bugbears – the term “therapy” being added to normal, everyday activities. Why is it that when people get old, they suddenly stop enjoying music and now have to have “music therapy”. Or art “therapy”? Or pet “therapy”? Why can they not just listen to music, do a bit of drawing or own a pet?

This is a major part of the medicalization of ageing, and the ageist positioning of people when they get old and are in need of support. The word therapy implies that there is something wrong, that you need “professional” help, that you are indeed sick!

A few years ago I vowed to NEVER attend a “dementia conference” again. In my opinion it has become a money making scam, playing on guilt of families and fears of caregivers, all these “therapies” that are invented for the poos sods living with memory impairment! Some of these are plain demeaning, reducing adults to toddlers, insulting them with colouring books and building blocks, bringing in the clowns and purring electronic pets. These “therapies” have become an industry – hence the term “dementia porn”! Like sex-toys for the “demented”…

There is very little research that shows that any of these supposed interventions have lasting positive outcomes from a “therapeutic” perspective. On the other hand – we know the power of music, or artistic expression and the joy derived from the unconditional love of a pet. But why make this into “therapy”.

I think it all stems from power issues. Instead of taking the time to sit and listen with someone to their favourite music, we horde everyone into the same room and do a Vera Lynn singalong! (All old people like the wartime fabourites, you know!). We get someone to bring their docile Labrador to let everyone pet the poor dog. I often think how cruel it is to give someone five minutes with a beautiful dog, only to take the dog away again. It must feel terrible to someone who really loves dogs!

And then there is “horticultural therapy”…let’s all plant plants in little pots, inside in the lounge, then they are whisked away never to be seen again.

Ok, so now I have yet again stepped on many toes. Why can we not simply create environments where we can encourage people to ENGAGE with life? Have pets that they can feed, can sleep in bed with them, that will bark and run and pee in a corner? (Like my dogs do all the time when it rains?) Why can we not participate in baking bread, making toast like we do at home? Or go outside in the garden and dead-head the roses or daisies? Or write letters (yes, that is what we all did) to far-away family and friends? Maybe even draw a picture just to add colour to the letter?

Risk. We have become so risk averse that we prevent people from living, as if they are sick, and then we throw therapy at them to mostly make US feel good, to show the world how well we uhm….care? I really think that when people withdraw it is because they often cringe so badly that they simply have to disconnect.

If ever someone puts a plastic bin around my neck and give me lukewarm sugary milky tea in an orange plastic mug and will also close my eyes and hope to die. Right there, right then.

Remember, “consciousness is never affected” for people living with dementia. They know, they feel, they hear, they see. They are aware, conscious. Try and imagine, just for a second, how you WOULD react if you were given a bowl of pureed sloppy porridge-like food for lunch. The sad thing is that the person with dementia most probably wants to react exactly the same as you would, but they have lost the ability to respond. So they stop eating.

We need to start believing that people living with dementia are conscious, adult, sensitive, human beings. They are not patients. They have a right to citizenship, power, autonomy, dignity, participation, agency. They are not “ours” to treat of care for (I often hear the phrase “my residents”), they are people in their own right whom we have the job of supporting, enabling.

If we can change our minds about people whose minds have changed, their lived experience (and ultimately clinic outcomes) will be vastly improved.

Embodiment

Embodiment – our “being-in-the-world” is validated by others (or not). We must move beyond the imposed golden standard of “normality”. In these really crazy times that we live in with the Boris’s and the Trumps, we can actually start questioning what is “normal”? Who decides on how anyone should BE, what is “the right way” to behave?

Living with a different ability (and here I do not refer to Boris or Trump) does not mean that we are no longer human, no longer have citizenship of autonomy or power. We are stepping out into the world differently, but no less real (maybe a lot more real) and no less human. It is when the world strips us of our power and citizenship that we “suffer”, not from having Alzheimer’s, but from the way that we are treated by the world.

When memories go, our embodiment is our presence and standing, both literally and figuratively speaking. And remember, we are always conscious of our being-in-the-world. And when we can no longer speak, out embodiment narrates our story. Embodiment is also our Divine expression – we are the manifestation of the Mystical Mind. It is not as if we suddenly have no purpose, indeed I believe that we fulfill a Higher purpose in our embodiment when we can no longer Be the way that we were before. We are now teachers…

It all sounds very esoteric and “airy-fairy” some might say. I know. It is! For me, a part of what is happening in this crazy world is exactly that – we have lost our Humanity. We have lost our sense of Being, we no longer see/feel/sense the Divine. People are reduced to biomedical phenomenon, a brain. They are robbed of their identity because we can no longer see/feel/sense their reflection of us, of who WE truly are. In this disconnected world we have become so private and individualistic that we no longer really care about each other, about the planet, about our Selves.

Living with memory loss, neurocognitive impairment, dementia, Alzheimer’s – call it what you want – does not mean that we are no longer living. And while we are living we have the sanctity of Life and deserve to be full citizens, not hidden away in Frail Care Centres or fancy villages specially designed for us. We should have the right to be who we are, different, in the world amongst everyone else. And the everyone else, who have so-called “normality” and should be able to make sound decisions, must learn to live with our difference, respect us for the way we are now expressing our Selves, see in us that “there but for the grace of God go you and I”.

Only once we stop the segregation, the institutionalization, the medication, the stigmatization, will we start to create a life worth living for people whose minds have changed.

The biomedical closet.

So yesterday I had the privilege of a nuclear bone-scan. Bit like an MRI, or “going through the tunnel” as my Mom would say. Thank God it did not have the accompanying clacking noise that comes with an MRI. Strapped onto a trolley, with this big white space-age machine closing in on you to literally a centimeter from your nose, staying there while you can feel yourself breathing against the metal. I had to haul out all my meditation techniques to not go into a panic and hyperventilate.

The whole procedure took forever without much information imparted. Reading all the warning signs, I had to ask the technician what it is that she is injecting into my veins that will be absorbed in my bones. “Isotopes” she said. “Oh, isotopes!” I thought. Nice. I wonder what chemical reactions needs to take place in my body that will make those little buggers go right into my skeletal system…

As a friend mentioned yesterday – the minute you are stripped of your clothes and in a hospital gown, you keys, wallet and cellphone (hopefully) safely locked away, you lose all agency. You are now a number on a file. They will tell you as little as possible, be as courteous s possible, and talk just softly enough to each other whilst scanning your body to make you think “OH MY GOD I WONDER WHAT THEY ARE SEEING AND DISCUSSING AND WHAT HAVE THEY FOUND AND MY LIFE IS OFFICIALLY OVER AND AND AND!”.

And after hours of lying there, spasmed up to your eyeballs having been strapped to an icy cold metal trolley trying to not scream “get me out of here!!”, they calmly say “thank you Mr. Stroebel, you may go now”. Like not a word of information. “We will send the report to your doctor”. Goodbye. Totsiens. And I want to scream “NO! This is MY body, you tell ME what you found, and I will tell my doctor, IF I FEEL LIKE SHARING IT WITH HIM!” Nope. Go home, worry yourself stupid for a few days, and the doctor will phone you when he has time. Eventually…(he did and all is clear. I am not going to die of isotope poisoning or anything else anytime soon as far as they know.

Now imagine living with memory loss or confusion, being much older and frail, and to be told that you have to go for a brain scan. (We know that a brain scan can detect atrophy, but then again most older brains have atrophy.) Is there really sense in putting someone through this hectic ordeal? I have my serious doubts…

What I try to bring across (and tried doing yesterday in my post about “old age homes”) is that we need to seriously re-think what we consider as “normal”, to redefine how we see and thank about ageing in particular. My friend and mentor Carol Ende says that she hopes in the not so distant future the current “frail care” of the world will be museums of antiquity, where we will take our children to see how older people were housed in the past. Much like visiting the Castle of Good Hope or the cell of Nelson Mandela on Robben Island. And our children will not believe what they see…

But for now, that is what we have and what we do. We somehow have created a new “normal”. Put old people in a hospital-like institution. It is good for them. We cannot look after them in the community and it is not safe for them. And they adapt. They even tell us that they are happy. In spite of the fact that all evidence point to the contrary, and the clinical outcomes show that it is not conducive to any measure of healthy ageing, we still do it. And yes, that is why we desperately NEED all the culture change movements we can get. It still does not mean that what we do is right!! We spend enormous amounts of money, time and effort to change something which is fundamentally and fatally flawed. Yes we make a difference, but we need to start looking at better alternatives. For us.

Again, just ask yourself the simple question: “is that how I would like to be?” Unless you can shout a resounding NO, we need to rethink the system. It will start to change only we can start facing our own mortality, start talking about it, and connecting with a different discourse on the future we wish for ourselves, create a new “normal”.

We must take ageing (and dementia) out of the biomedical closet. Give it a voice. Autonomy. See it, hear it. Photograph it, write about it in a different context, and see ourselves, all of us, on our way there…

The kindness of strangers.

Yesterday I had to take our Housekeeper to Victoria Hospital, the closest State hospital to our home in Hout Bay. It was an incredibly humbling experience, in so many ways. The rows of people, the Nurses, the Doctors, the man helping me to get a hospital bed to my car because there were no more trolleys or wheelchairs. The calm, caring manner in which everyone just went about delivering a caring service in what looked like total chaos to me. The charge was R70.00, to which the Admin Clerk added “if you can pay it now it will be great.” 

Just another Monday morning…

The Care Sector truly operates on the back (literally and figuratively speaking) of angels. Why would any doctor or nurse choose to work in such chaos and mayhem? Why not choose a private hospital with order and strict management rules, scheduled appointments and enough equipment?

I also had the privilege of being part of a discussion group that is hoping to build an age-friendly community in a low/middle income neighbourhood. Yes someone will make money, but the conversation was focused on mindful community creation. Business men who care about their aunties and uncles, whilst taking into consideration sustainable development that is also environmentally focused.

Whilst I hear the discontent and grumblings about how our country is going to the gods, I see so much love and care around me, especially in our so-called ‘poorer’ communities. In Care Homes and community centres. On Mandela Day I was told that one of our employees (someone working in a kitchen as a Cleaner) who once a week makes soup for those in need in his community. He is not a man of means, but he makes a difference. Is it not fascinating that often it is the people who have the least that give the most. Creating community. 

Last night I had an international conference call with some colleagues about changing the culture of care for older people. It would seem that we can no longer rely on the basic humanity of people, that we have to spend BILLIONS globally to try and teach people how to care. Speaking to young Occupational Therapy students from the USA this morning, I am touched by their bright eyed look at the world of ageing, and I have to really guard against sounding like a cynical old man…. 

If you start looking for the good, the good will find you, it will present itself in ways that you never thought possible, and it will change your view of the world. Go and spend a few hours in the emergency room at Victoria Hospital, or any other state hospital. Speak to the people who work there, buy them a cake. In every single care home that I have spent time, I have been amazed at the patience, the tolerance, the forgiveness of people who have to do this job day in and day out. They are the heroes, the people who we should look up to.

The sanctity of Home.

The house is cold. I stoke a fire, mainly for the dogs as they love to lie as close as possible to the fire. I quickly run outside to pick up lemons that were blown off the trees last night in the roaring thunderstorm. I fell asleep with the rain pelting down on the tin roof, bringing memories of Ouplaas in Knysna where I spent my childhood holidays with my grandparents. I remember sitting next to the wood-burning stove watching my grandmother go about her cooking, baking and creating the most wonderful family meals. The smells, the sounds, the tastes come back to me as the fondest memories of childhood.

Outside it is still raining, I put a pot on the stove for pasta, make a cup of tea, put on classical music and join the dogs at the fireplace. The house is glowing in the light of the fire, soft, warm hues reflecting on the paintings. I can smell the St. Joseph’s lilies that Katherine brought when she came over for our usual Friday evening get together, a celebration of friendship over a pot of hearty pea soup with smoked paprika. 

At bed-time I warm up my happy hugger, crawl into bed with the two Dachshunds and Jojo in tow. Now the fire is forgotten to them. We snuggle up, listening to the rain on the roof…

This is home. In an essay written by Petra du Preez-Spaun on “the concept of the contemporary home as sacred space” I again become acutely aware of exactly how sacred this space is. Jung held that a home is an expression or manifestation of the Soul. It is the way we nest, it is our temple, it is how and were we ‘worship’ – whatever form that might take. It is where we house our families, where we surround ourselves with the objects that carry our stories. 
Every item in our house has a story to tell. From the first painting I bought with twelve cheques to the ceramics I created, the stone I picked up on the beach in Scotland. The two little Scottish Terrier money-boxes that stood on my grandmothers’s dressing table and the blanket my mother knitted before the arthritis took its toll. The carpet we bought in Turkey whilst on holiday with friends, the red wine stain from a party, the dog hair on the sofa after giving up on not allowing them on the furniture. Petra holds that our dwellings are indeed “symbolic of the self”.

I cannot help to think of what it means to the Self to come to a point where one feels that you have to give up your home. For us, not having children (and even if you do have, most millennial-children of friends hold little regard for their parent’s ‘stuff’) who will be interested in taking or inheriting our stuff, these things will be meaningless, sold as a job lot at an auction. Lots 3748. 

Moving into a Care Home, one room, shared bathroom, tiled floor, no wall space for paintings or shelves for objects to rest your eyes on. How do people actually do that? Does it mean that suddenly those objects lose their meaning? I have heard so many people say that you do not need all that stuff…. I disagree. Our homes as sacred spaces represents us, who we are, how we choose to be in the world. It contributes to making our lives meaningful, it is our sacred cosmos according to Petra. “The house is one of the greatest powers of integration for the thoughts, memories and dreams of mankind” (Bachelard, G., 1964, The poetics of space, Boston: Beacon press).

I find it so difficult to imagine how a soul can flourish when being displaced, in what ever form, albeit as a refugee, asylum seeker, a shack blown down by the storms in Imizamo Yethu or having to move to a Care Home. And of course, all the more so when living with memory loss. Our home is not only an expression of Self, it carries our memories, it reminds us, soothes us, it nurtures our Being. It narrates our story when we can no longer speak. It fills the gaps in our history, physically mending our broken history. To discard our things is to discard our story. And I see the impact, I see how people withdraw inwards, fall silent, walk slower, eat less, laugh less. Not because they are old or have been diagnosed with dementia, but because their world has been taken from them. No amount of compensation will fill the void where our story once stood. 

We have to reconsider this phenomena of moving people, displacing them. Yes, I know ALL the arguments about safety and being taken care of etc etc etc. I want to make a stronger case for ageing-in-place, for civil society, community. Getting your medication on time does not sustain your Soul. Getting up and making your own cup of tea, the way YOU like it, in your favourite cup, THAT sustains your Soul. We can do all the culture change interventions one earth, I will maintain that an “old age home” is not a human habitat that will ever create a life worth living.

Personhood and consent.

Personhood and consent – what does that actually mean in practice? The values base informs us that “persons living with dementia are entitled to be regarded and treated as persons regardless of their cognitive state. Being able or enabled to make choices is one of the core attributes of being a person and a demonstration of whether or not others respect us as persons” (Dewing, J, 2008, Process consent and research with older person living with dementia). We must now start moving beyond the stereotyping of people living with memory loss, and the discourse of decline that robs people living with dementia not only of dignity, but also of autonomy, power, personhood and ultimately citizenship. 
I know many people will challenge me on this debate – how is it possible to get consent from a person who does not communicate verbally? Just look in their eyes when you ask them a question! They cannot make decisions! Yes they can! They do not know. Yes they do! 
The challenge with consent does not lie with the person apparently not able to give it – it lies with our inability or unwillingness to ask or obtain it. Consent or assent can almost always be gained through a process of careful explanation and observation. 
Do we ask for consent and bother explain giving medication to a person living with dementia? Do we tell them every time what the medication is for and why it is important for them to take it? Do we negotiate consent before we undress them and take them for a bath or a shower? Do we obtain consent before taking them to a doctor or performing a medical procedure? Before we put food in their mouths? Before we take them out of bed and undress them? I know we don’t. Again, the argument of not having enough time or people on hand to do this will be thrown at me. 
Inclusionary consent it a process, a way of communicating around every aspect of our interaction with a person living with dementia. Do you mind if I sit down with you? May I take you to the dining room? May I take you to the bathroom? May I take down your trousers and put you on the toilet? And what if they say no? Do we actually listen or carry on regardless, enter into arguments and write in our report how “difficult” the patient was?
Imagine, if you can, for one moment that you are living with memory loss. You are woken up by a person you do not know or think you have never seen before. That person, without giving you time to centre yourself or without telling you who they are, start taking you out of bed and wants to take off your clothes and wants to take off your pants, no explanation. What will your reaction be?
Is it not time that we have a very serious conversation around our attitude and perceptions of people living with dementia? That we stand still for a moment, look at ourselves and deeply question what we consider to be our own humanity, how we wish to be treated, spoken to and regarded and then afford people living with dementia the same right? It is not about “allowing them” to choose – it is the most profound human right, the right to choose, to give consent or refuse it. Autonomy. Dignity. Personhood. 
“Surely it will be chaos!” – I have heard this often. No, it will not be chaos, it will simply not play out according to your plans. It will not be chaos, in fact, I can almost guarantee you that it will lead to less chaos, less stress for the person living with dementia and their caregivers, and ultimately lead to better clinical outcomes and a reduction in medication. But, and this is a big BUT, it will only happen if you are prepared to relinquish your position of power. If you are willing to risk adjusting your routines, letting go of your power base and control issues, you will find a new way of Being with people living with dementia. The more you respect their autonomy and their abilities, rather than focusing on their perceived DISabilities, the more you will discover the consciousness that is intact, the sense of humour, the playful inner child and the scared adult that is desperate to assert even the slightest bit of autonomy. And you will enable the person, support them to be the best that they can be.
The more attention you will pay to their body language, facial expressions, hand gestures and eye movements, the more you will connect and communicate with the PERSON behind the disease, and reconnect with the sacredness of their Spirit.
Let go. Let them be your guide and your teacher. Stand back, centre yourself, be authentically present. It is the right thing to do. It is what you would want for yourself if it was you living with dementia.

Growth.

At my recent talk in Stellenbosch I asked a group of older adults to think about their internal dialogue. What goes on in their minds? What is the narrative/story that they engage with in those early hours of the morning, or at night, alone in bed before they fall asleep? How do they narrate their own story, frame their being-in-the-world to others? Our lived experienced is framed through our narrative – how do we tell our story? Because this framing loops back to how we think of and see ourselves.

Do we at the age of sixty or seventy think of GROWTH, planning for the future, making plans for the years ahead. Our brains, from about the age of sixty onwards, develop new neurological pathways that enables introspection and contemplation. We naturally start looking inward, have a deeper reflection and wider angle of viewing our Selves and our life. We no longer sweat the small stuff and have much more insight. We become wiser.

This is a remarkable gift that often goes unnoticed as a result of the doomed feeling of coping with losses. We become aware of our physical losses (hair, hearing, agility, spouses, friends, general health) and are told by the world that we are now retired/retarded/redundant. We feel more vulnerable and start taking on board the ageist projections of society. We fight back with implants and botox and Wella, have an affair or go on a cruise, walk a pilgrimage or buy a new Audi TT (from which we can hardly get out without crawling on all fours…). We read anti-ageing stuff and pretend that it is not happening to us. And yet…

There is a dichotomy, a clash of body and mind, and instead of letting mind guide us to new levels of awareness, we let society and the slowing of our bodies pre-occupy us into a facelift! What if we embrace the slowing and wear-and-tear of the body as a gift? That does not mean that we give up – on the contrary! We must work harder than ever to stay fit (yes and it IS four times more difficult), eat well, socialize and learn new things! But if we embrace our age. Accept the gift of wisdom over the burden of our perceived losses…

After the age of 60 we need to be a lot more conscious of how we frame our being-in-the-world, engage our minds and go about this thing called living. The time to mess around is now over. We have to start, consciously, investing in our future. Now, more than ever, we must contemplate growth. Spiritual growth, emotional growth, social growth. NEVER allow this sacred time to be filled with people who drag you down and are negative and destructive. Clean your cupboards – literally and figuratively speaking. Be wise in your council, choose your company well, choose your food well, choose your thoughts even more critically. Focus on the beautiful moments of articulation in your own story. Take all the patches of your life – the good, the bad, the ugly, and start stitching them together in your own patchwork quilt. Narrate the patches with the gold thread of own your own discourse of gratitude, seeing the gift of ageing as a time to contemplate, to give back, to make the world a better place. To grow with intent! Refrain from bonsaing your growth – let the rhizomes grow wild! Enjoy the wonderment of new leaves and branches and buds. Don’t judge the gnarled knobbles of hard and calloused wood – take a close-up photograph and sew it into this tapestry that will be your legacy.

No one is insignificant. Reflect, reframe, re-imagine. And in the stillness and slowed down pace you will find the Mind that connects you to the Source of your own Being that will graciously guide your Growth to fulfill your covenant with the Earth. These are the best years of our life.

Independence – is that it?

Yesterday I was on my way to do a talk at Azaleahof in Stellenbosch on “How can I stay as independent as long as possible?” Driving through the beautiful Winelands my thoughts wandered far and wide. This has been one of my themes over the past 24 years – for Older People, Quality of Life is directly linked to independence in activities of daily living (bath/shower, eat, toileting, walking and dressing by oneself.) It makes sense. Or does it?

Our Western approach to living is all about becoming independent as soon as possible – walk on your own, ride your bike, finish school and get out of the house as soon as possible to start your own life. Be successful, which means that you are independent – start your business! Is it possible that in this process we are conditioned to not need others? That in fact, it is a sign of weakness to admit to needing someone to support you. It is a fact that this attitude leads us away from family, make us create artificial and shallow friendships. Whilst Jung promoted ‘individuation’, I do not think he intended for us to become the selfish, self-absorbed individuals that so many of us have become.

In my talk I questioned this notion of independence, and tested with my very educated audience full of professors and doctors. I could see that it made them think – as it did me! Is it possible that this monster that creeps us on so many of us, especially Older People, called LONELINESS, is a direct result with our obsession with independence? Our stoic, stiff upper lip attitude where we mind our own business – has this resulted in people being completely disconnected, seeing the need to ask for support as a weakness? The fight between children and their aged parents about moving out of the house, stop driving and move into a Retirement Place – what is that all about? Is it to maintain independence , or is it to further alienate us from each other? To pass the responsibility to the ‘facility’?

We all live very busy and fast lives. We do not all have the means to support our older parents. But so many people live in communities that if they were more sociocentric, would support ageing in place. If asking for help is not seen as a weakness, we would create a civil society where people actually reach out, where they barter and gift, and where older people will be supported in intergenerational communities to live a life worth living, NOT necessarily an independent life, but a life worth living. If we reconsider our linear approach to ageing and see people being reabsorbed into a community, reintegrated and honoured for their contribution, the need for retirement homes will actually fall away. Yes, in South Africa safety and security is a major issue. However, I do believe that that is not the crux of people moving out of their homes.

Too often have I heard the phrase “we do not want to be a burden to our children”. What a horrid state of being would that be if a relationship has deteriorated to the point where someone feels a burden. Can it be that it is this very feeling, this state of being, that impacts more severely on the ageing trajectory than physical ageing itself? Is this not what makes people ill? What makes them disconnect to the point where they live with memory loss and eventually dementia? Because they see no purpose, no role, they have no reason to get up in the morning. Our insistence on independence should be replaced by a consciousness of interdependence. Of truly connecting across neighbourhoods to support, to nurture and to honour.

We do no need to look very far down the road to find an older person living on their own who could do with a little bit of support. We need a serious change of mind around the phrase “so what are your retirement plans?” Over lunch with my friend Lydia we talk about the fact that more and more people are asking her and her husband (who have both recently retired) “what their plans are”. Like “do you have a funeral policy?”, are you prepared for the plague? Again, I want to reflect on my musings around friendships. Possibly the best longterm investment that anyone can make is cultivating authentic relationships. The type where you can be vulnerable, ask for support, trusting your innermost feelings to that person. It is about reciprocity – these deposits and withdrawals over many years will eventually start building up dividends. the same goes for family – don’t wait for them to call. You make the call.

My Grandmother never had one day where someone did not pop in for a cup a tea, a good gossip and lots of laughter. She lived on her own for years, but I am sure she never had one moment of loneliness. See, she was giver. You bring her a bunch of grapes, next time you will get a jar of grape jam. Or rusks, or biscuits, or some other form of a gift. You never left her house without feeling good and having a gift in hand. And she never looked far to find someone to help her fix a tap, mow the lawn, move a piece of furniture to get a thread through the eye of a needle (that was usually my job).

Ubuntu. I believe that we have lost the art of community, and it is through this loss and disconnect that people age the way so many do. I do believe that because we are not truly connected, either to a community, nature or something bigger than ourselves that we become disconnected from ourselves and begin to lose our sense of belonging.

Being mindful is the first step in repairing this world filled with so much loneliness. Reaching out, asking for support and help, being vulnerable.

When speech is gone…

What happens when speech is lost? How do we express ourselves? Or rather, how do we give expression to our Selves? We give embodiment to our Being through our speech, or our writing, literally narrating who we are and how we want our Selves to be positioned in the world. And then it dries up…does that mean that when we are no longer expressed, that we seize to re-create our being-in-the-world? What happens?

I think that we have many ways of expressing our Selves, and while speech is the accepted way of expression, our communication abilities are more complex than just speech. In fact, whilst it can be extremely difficult for us when we cannot verbally express our Selves, it can also redefine our communication with the world. Perhaps people who are truly attuned to us will now pay closer attention. Perhaps they will look at us more intimately, perhaps even truly see us for the first time…

The ability to communicate does not go when we can no longer speak. It does however become more complex and intimate, and often I see people giving up trying to communicate – not because they cannot do it, but because they are not paying enough attention to be “heard”/seen. Instead, we develop ‘tricks’ and ‘gimmicks’ to control people living with dementia, to get them to ‘agree’ with what WE think they want or need.

A simple example of this is when it comes to giving medication. What is the right thing to do if a person living with dementia refuses to take their medication? Or refuse to take a bath, be shaved, have a haircut? Or refuse to eat? Do we honour their agency/autonomy, do we enter into a process of negotiation? Sadly, in most cases we take over complete control and force our will on the individual, robbing them of any power that they might need to assert. Through this we imply that the person living with dementia has no sense of Self, that they are not at all conscious, nor that they are actually trying to communicate something to us. Is this not in fact denying them or robbing them of their citizenship? At what point does the person living with dementia actually give up their right to citizenship, autonomy and free will? Do we consider that there is a right to free will?

If we can finely and intimately attune ourselves to the person living with dementia, we will learn a new code of communication. Through their eyes, hand movements, body language, facial expressions, they way they tilt their head they are communicating with us. There is often no need for language of verbal expressions – that is OUR way of communicating. It is when we open ourselves to THEIR way of communicating that we start to explore, to discover the most wonderful moments of articulation, different pathways of knowledge and information being transferred, and a true connection. Coming to think of it, language in certain cases where people are living with dementia, can often be a barrier to connecting. We sadly are SO caught up in our need to explain ourselves, that we have just about lost the ability to BE, to absorb every nuance of the person who can no longer speak. Someone mentioned recently that we are indeed human BEINGS, and not human DOINGS, yet we incessantly try and DO rather than to just BE.

Again, this is not easy. It takes time, it takes a lot of patience, centering yourself, taking deep breaths and the ability to let go of thoughts that might distract you from the moment of being. It sounds simple – yet it is not easy. It comes with practice, and with a true curiosity to connect, to honour the person living with dementia and meet them where THEY are, not trying to constantly drag them into our world. 

A few years ago one of our Residents suddenly refused to eat or take any of her medication. This was very difficult for the Nursing staff to accept. Plans were made to crush medication and put it in a spoonful of jam. Talk was of a nasogastric tube feed. I asked the Care Partners what they were thinking was happening. It was clear to them, this person wanted to die. I asked their opinion on what we should do. It was decided that we would leave her favourite food next to her bed, and offer her things to eat every time we came into the room. This was discussed with her family who agreed on our course of action. We also offered her her medication at the regular times, and after trying for a while we left it with her food, reminding her of it at regular intervals. She made no attempt to eat or take her medication. A few days later she passed away very quietly and peacefully, surrounded by the Care Partners. If feel that we honoured her autonomy and personhood.