Come, sit next to me.

Come sit here next to me. Somehow this sentence is always comforting. It is an invitation one expects from someone who cares – a friend, a lover, a parent or grandparent. It feels comforting, reassuring, welcoming. And non threatening. We are on the same level, and I don’t have to feel that you are looking at me. We can look in front of us, non confrontational. And I can feel you next to me. I might even hold your hand or place my hand on your knee. Gently.
We do not always have the courage to look someone in the eye. Sometimes we just want to avoid the reality of a stare, the vulnerability of facing someone or something. Then we need to just sit next to someone. I want to suggest that it is a way of dealing with the difficult things in our lives – pain, sadness, loss, trauma, fear. We are taught that we should face things head on, that we should look them in the eye, stare them down, be strong, be brave. Stand tall. Sometimes we simply do not have the courage to do this and just want to run away. Well maybe “come sit here next to me” is an alternative.
For many people dealing with a loved one who is living with dementia is too much to face at times. We do not have the answers as this is not what we signed up for. We have no idea what to do and beat ourselves up every time we make a mistake. We feel terrible when we are not the brave superstars that everyone says we should be. We lie awake at night, worrying about where this is going. We always feel that we have to ACT, that we have to DO, make things better, solve problems and have answers.
What if we simply invite this “unknown” to come and sit next to us. To be simply BE with that feeling – the fear, anxiety, anger or hurt, the unknown. Invite it to come and sit next to you. Close enough to feel its presence. Next to you so that you are aware of its presence, but don’t quite have to look it in the eye. Close enough to feel it, smell it, hear it breath. And just be with it, in the now, sitting and getting to know it. Then perhaps put your hand on its knee, gently feeling what it feels like. No need to talk or to explain or to answer questions. Just BE.
In this way we can get to know each other on a much deeper level. Sit there for a long time. Watch the sun set. Hear the birds. Don’t rush. Then get up and go on with your life. Maybe make a date for another sitting tomorrow. And the day after. And perhaps you will get into a pattern of sitting comfortably with the discomfort of whatever it is that is difficult for you. The same would apply for your loved one living with dementia. You do not have to talk or do anything. Ask them gently “come, sit here next to me”. Your presence is the biggest gift that you can ever give someone. Be generous with it, for it will open your heart and your mind to receive that person’s vulnerability and share your own.
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 rayne@mindsmatter.co.za <mailto:rayne@mindsmatter.co.za> www.mindsmatter.co.za <www.mindsmatter.co.za/>

Anticipatory grief

What Is Anticipatory Grief? “Anticipatory grief is defined as grief that occurs before death (or another great loss) in contrast to grief after death (conventional grief). Rather than death alone, this type of grief includes many losses, such as the loss of a companion, changing roles in the family, fear of financial changes, and the loss of dreams of what could be.”
My friend is experiencing a deep sense of grief. Her husband is living with dementia. Amidst the challenges of COVID and a deepening sense of global angst, this grief is gripping and at times overwhelming. I have seen this often, and mostly it manifests as a withdrawal or disconnect from the person who is expected to die. Many, many people in fact take leave of a loved one long before their death as a result of this anticipated experience of loss. If nothing else, this process of anticipatory grief is as real as is the grief experienced after a person has died.
The sad thing is that this reaction to impending loss means that both the person who is grieving and the person whose death is imminent are losing out on quality time and connection. Let’s just stand still here for a minute. We are all going to die. We are all going to die. I am not for a second diminishing the fact that anticipatory grief is not a debilitating emotional condition.
However – I learn from my friend. In her deep sense of the anticipated loss she is getting closer and closer to her husband. She has forgiven him all the little things that – like in every long partnership – were obstacles on their way. She sleeps with him every night. She holds him, laughs with him, lives with him and loves him more than she has ever done before. She embraces their time together, she is fully focussed on his needs. She honours him as husband and not as “patient”. She props him up, makes sure that he is always immaculately dressed, groomed, that his teeth are flossed and the hair in his ears and nose trimmed. He wears a spectacular pair of spectacles, and an even snazzier pair of sunglasses. He is first and foremost her husband and lover – in spite of the fact that he loves with advanced dementia.
I always say that death teaches us how to live. But it’s too late when someone dies to have the life we should have had with them. That is why I think anticipatory grief is a good thing – IF we are not paralysed by it. So. Think of the people you love. Try and imagine their death. Sit with that, visualise it, feel it deep in your Soul. Sit with it a bit longer. Now get up and embrace the life you have with them. With open arms and an open heart.
When next you hear someone say “she is no longer our Mother” or “we don’t visit her in the old age home because she doesn’t know” – think of this. (S)he is always your Mother/Father/Husband/Wife. Always. Even after their death they will remain that. Death – and our anticipation of it – must be foremost in our minds. It will teach us to be more present, to be more mindful, to appreciate how precious this life is. And it will hopefully bring us closer here and now.
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 Rayne.Stroebel@mindsmatter.co.za www.mindsmatter.co.za

Presence

We are all interrelated and interdependent. No person exists merely as one person. I am the becoming of my mother and future. Our children are our expression. In Afrikaans the word “vergestalt” describes how language gives meaning, makes concrete our feelings and emotions. We express ourselves through language. But what if I start to find language difficult? Does that mean that my feelings disappear?
People living with cognitive impairment often find language difficult. This means that the way that they express themselves becomes difficult. If we cannot say how we feel it does not mean that we stop feeling. On the contrary, I think it often makes our feelings stronger. So inside of us things would start boiling and percolating, all these feelings and emotions and thoughts that we can no longer express are now all bottled up inside. Whilst many people communicate in non-verbal ways, and often do so very well, it is our understanding and interpreting of their non-verbal communication that lacks insight and understanding. We all come to each other with our own filters and preconceptions. It is very hard to be completely open to the message that someone is trying to express, especially when that message is expressed in a non-verbal way.
The result is that people living with dementia will often simply stop trying to communicate. NOT because they are living with dementia and lose their ability to communicate, but because we simply do not have the ability to be present enough, take the time and listen intently enough to “hear” them. The problem lies with us, not with them. Slowly their frustrations will get the upper hand and they will withdraw inward more and more. They will consciously cut off from the world because it becomes just too hard to navigate our inability to communicate with them.
The further dilemma is that the world also then gives up, thinking that the person with dementia no longer FEELS, because they no longer express their needs, desires or thoughts. There can be nothing further from the truth. And then, we stop treating people living with dementia like human beings. We let them sit in a chair for an entire day without any meaningful engagement. We talk over them. We administer tasks like bathing and dressing without as much as acknowledging them, let alone asking their permission. We crush their medication into their food when they refuse to swallow it. We dehumanize them to the point where they simply become living dead people. Bodies. Numbers.
It is very hard to bring about any change in the way that people living with dementia are treated in many residential care homes. I see a new interest in this globally, with the USA focussing on a new “Care for Our Seniors” act being proposed as a step towards transformation. Sadly, the focus (in my opinion) is again off mark. Unless we start with the rights of the people for whom we propose to care, no amount of quality indicators or workforce development or structural changes will make a difference. Yes, employees need to be paid more. However, an increase in pay will not improve care. The fanciest building in the world will not create a life worth living. The best standards, and the best oversight of such standards will not change the hearts and minds of the people who care for the vulnerable.
It is only when we get to the point where we truly understand the ecobiopscychosocialspiritual complexity of our being-in-the-world that we start seeing change. From the inside out, not the other way around. Andries Baart’s www.andriesbaart.nl/presentie/ <www.andriesbaart.nl/presentie/> brings us to the essence of care. We need to shift our focus away from the concrete towards a more holistic approach, one that is truly ethical ethicsofcare.org/becoming-a-care-ethical-institution/ <ethicsofcare.org/becoming-a-care-ethical-institution/> These are very hard questions that we need to ask ourselves. They require that we become very still, that we look deep inside, that we build the bridge of empathy towards a greater understanding of the vulnerability and precarity of life in general. Only then will we truly see the person behind the disease and begin to connect on a more spiritual level, honouring the Soul of the person living with dementia and those who work with them.
Somehow I think my suggestions will fall mostly on deaf ears. We want to write policies, create standards, police people. I will not give up.
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 rayne@mindsmatter.co.za <mailto:rayne@mindsmatter.co.za> www.mindsmatter.co.za <www.mindsmatter.co.za/>

Confusion

We have slumbered into complacency accepting the status quo. We must wake up. Chances are that we – yes YOU – will grow much older than what you thought you would. Imagine…being 85. Try and visualise yourself as an 85 year old. Take a good look at yourself in the mirror – what do you see? Can you actually visualize yourself at that age?
Think of yourself in so many years from now, when you have become more and more of who you are now, all the sharp edges are now sharper, the blunt ones are blurred more than they are now. You are a more difficult version of yourself. Do you like this older version of yourself? Are you gracefully accepting the changes in your body – having to get up three times a night to go to the toilet, being perhaps hard of hearing, maybe have three sets of spectacles (one for tv, one to read, one to find the other two pairs). Perhaps you live alone. Or maybe your current relationship has fizzled out to a droning irritation. Your children annoy you and you avoid your grandchildren at all costs. Worst case scenario!
Maybe it is not the worst case scenario – what if you realised that you have started to be slow of cognition. You really cannot remember important events, names, dates. You have to leave sticky notes everywhere to remind you of your chores, your passwords, your appointments. Sometimes you read the sticky notes and you have no idea why you made the note in the first place. You feel terribly insecure. You lose track of time and become confused in conversations. Your children shout at you when you nod off in conversations, but you find it is your only escape. Sometimes, in the middle of a family gathering, you want to just scream at everyone at the top of your voice to LEAVE YOU THE HELL ALONE. You feel incredibly sad and lonely.
You wake up in the middle of the night knowing that something is wrong. That something is really wrong. You fret and worry about what your children are discussing behind your back. When you wake up in the morning, exhausted, you simply do not have the energy to tackle the day, least of all because you have no idea what day it is.
Confusion is a terrible condition which often presents itself to older people, for many reasons, and is extremely debilitating. People get confused because they have no reason to get up in the morning, no purpose, with one day flowing into the next. Confusion can be as a result of dehydration, or poly-pharmacy. Often people do not take their medication according to the doctor’s prescription (AFTER meals, last thing at night etc) which could result in an impaired homeostasis or iatrogenic disorders (side effects of medications or other well intended medical interventions). Incontinence often appears as another “old age problem” which is seldom discussed – an acute bladder infection or urinary tract infection could lead to transient incontinence, which if not dealt with properly can lead to chronic incontinence. One of the most common signs of this condition is confusion.
A long term depression will lead to confusion. Up to 80% of older people (especially those in long term care) suffer from depression, which will lead to confusion and other so-called “symptoms of dementia”. Too often older people are dismissed as “just being old”, when in fact they are at the mercy of conditions that could easily be solved with a proper geriatric assessment.
Confusion should not be confused with dementia. People living with dementia can often be confused, but not all older people who are confused are living with dementia. We need to distinguish between dementia, depression, delirium and confusion. Dementia is a diagnosis by exclusion – there are a host of conditions that need to be excluded before even thinking that a person might be living with dementia.
Point is – we are all growing older. We will all be at the receiving end of at least some of these issues. The bigger question is – how would YOU like to be treated? What are you investing at this early stage of your life to make sure that you are treated with dignity and respect, that people listen to you, care about you and will care for you? Don’t wait until you are 85. And perhaps if you are not quite ready to look at yourself in the mirror, look around you at older people. Well, sadly most of them are under lock and key in “old age homes” so you might not see many of them…. But try and connect with them. See if that is the way YOU would like to Be when you are old one day.
We need to start raising more and more awareness of how older people are treated in society. If for no other reason than to make sure that by the time WE get there, we will not be locked up in institutions that profess to be there for our protection. Old age is not a crime for which you should be “admitted”. Educate yourself, decide today what your old age will look like. Make the invest to ensure a life worth living!
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 rayne@mindsmatter.co.za <mailto:rayne@mindsmatter.co.za> www.mindsmatter.co.za <www.mindsmatter.co.za/>

What if….

I wonder what would have happened if we considered dementia to be an “altered state”, reframing it as not a syndrome or an illness, but a different way of being in the world. What if there had never been this obsession with the biomedical rhetoric of brain dysfunction or cognitive impairment? What if people who were forgetting or who saw things that we could not see or who became detached from our way of thinking or looking at time differently were considered not demented, but living in an altered state of consciousness. What if we honoured them as people who were in touch with their higher Self, or in touch with a world beyond the here and now?
First of all I think these people would be living a life not filled with fear and anxieties. They would not be labelled as mad or demented, they would not have what we label as “behavioural and psychological symptoms of dementia” nor would they “wander” or “vocalise”. They would be fully integrated in our lives, they would be living in the now, something that most so-called evolved Souls long for and spend lots of time and money in spiritual retreats to try and attain. They would sit among us, we would look up at them, and we would treat them with respect and reverence. If they want to walk, we would walk with them. We would not play childish games with them to cajole them out of their sense of now, nor would we ask them stupid questions to “test” their cognitive ability.
For you see, if we do not frame their altered state as a sickness we would not have to test or assess or screen them, we would simply accept them for who they are, where they are. We will aspire to be like them, we will sit with them to learn from them learners at the feet of wise people. We will not medicate them or tie them to chairs. If we see them as Elders, wise people who are our teachers, they will be exactly that. We will learn patience, forgiveness, and tolerance. We will want to be in their sacred presence.
Is it not time we start to reconsider “dementia”?
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 rayne@mindsmatter.co.za <mailto:rayne@mindsmatter.co.za> www.mindsmatter.co.za <www.mindsmatter.co.za/>