Companion – neither of us know

The Companion is the position of sitting with the person with dementia in their lack of motivation or direction or knowledge of what to do about the situation. Companion is the position of presence. Motivation and activity are low. It can be tiring to function at such a low level of activity. It can also be anxiety-provoking to sit with the lack of direction and action. However, it can bring you together in a way that you may not normally get to do when you are active and busy. This can be a companionship that brings comfort and calmness. It is the position of “being with” rather than “doing with”.

It may be that these are the times when dementia becomes the third presence in the room. Feelings about the dementia can emerge in each of you and come to awareness. How do you each feel about this “thing’ that has changed your lives? May be that is what you end up doing – talking about ‘not doing’.

Tomorrow we look at how to move from one position on the relationship compass to another

Collaborator (We both know)

This is a position of collaboration in which you can work together to enjoy moments of attunement and contentment. These can be rare but important in sustaining you both. It often means holding back from being the expert in order to allow the person with dementia an opportunity to use their skills and contribute knowledge so that their sense of agency and effectiveness can flourish.

As dementia progresses these moments may be less frequent and you may need to move to the expert position. The person with dementia may well feel relieved and calmer when you take over because it may provide them with security and a sense of safety. They are with someone who knows what to do. It is important here to do this in a manner that is gentle, calm and kind. Avoid being domineering, abrupt and bossy. That will activate either push back or withdrawal, both of which are unpleasant and unhealthy for the person with dementia, and damaging of trust and respect in your relationship.

Columbo (You know & I don’t know)

For those unfamiliar with the 1980’s American TV character, Columbo was the bumbling cop who came across to villains as an ignorant fool because he asked questions that showed he didn’t understand. However, he gets the crook by the end of the show. As Columbo you adopt an “I don’t know” stance that values what the person with dementia thinks and wants. You apologise for not understanding. You ask questions. You seek to understand. You put them in the expert position

Yes this is strategic. It is also the right thing to do from an ethical point of view. What the person prefers is valuable. Your goal here is to lift them up in the interaction by giving them importance and priority so they can contribute their perspective. They may be having difficulty finding the words to explain what they want. You can ask questions that help them clarify to themselves and to you. This is useful if you are both stuck in a disagreement about what should happen next. Often the steam will go from the interaction and you can then move to Collaborator with the person to find a mutually agreeable solution.

Tomorrow is the Collaborator

The Expert (I know & you don’t know)

This is the Expert position. You know what needs to be done. You know what is wrong. You understand. You can give advice. And the person with dementia doesn’t know nor understand or is not seeing the risk that you see.

There are times the Expert position is necessary such as when physical safety is at risk. The person with dementia turns to walk into traffic with no awareness of the possibility of being injured. You can see the risk and they don’t. The responsibility for acting is with you to prevent them being injured.

This is also the position of advice giving. You have knowledge and can share it. They may not have knowledge for the situation. You know the plan for the day is to go to lunch at the golf club and requires a rather formal standard of dress. You can suggest or tell (perhaps) the person what to wear. “You’ll need to wear a tie. That green one looks good on you”. This is the Expert position.

Tomorrow is the Columbo position

The relationship compass

This brings us to the various positions you can take when caring for a person living with dementia. As a Sherpa you will likely take up all of these from time to time. Being in a relationship with someone we need to be flexible. Try to avoid becoming stuck in one position or think you should be a certain type of carer or behave a certain way all the time. It may be that you have the idea of how a carer should act from watching someone you admire or perhaps you only know of one person who has cared for a person with dementia and they did it this way, or this way. So I should be like that. This will only make things worse for you both and cause problems, conflicts and upsets for both of you.

If we think of a compass there are many points around it. There are also many ways you can be with someone with dementia. On a relationship compass you will need to move around the many possible positions for you to maintain the person with dementia and yourself in a condition of wellbeing. This requires flexibility and timing to use the right position or approach at the right time. Have a look at Figure 1.

Relationship Compass

COLLABORATOR
(WE BOTH KNOW)
COLUMBO
(YOU KNOW & I DON’T KNOW)




EXPERT
(I KNOW & YOU DON’T KNOW)
COMPANION
(NEITHER OF US KNOW)

There are many ways you can be with the person with dementia, depending on the situation. Let’s look at each of four situations that are common. You might like to add your own combinations or relabel the positions here to make sense for your relationship.

Next posts will explore each type of relationship in turn

You are a Sherpa

If you are reading this blog post I assume it is because you have some contact with a person with dementia or a reason for wanting to know more about how to act or relate with the person with dementia. Or you may have had some difficulties that have prompted you to want to know more about how to do it.

The role of living with and caring for a person with dementia is akin to being a sherpa for a mountaineer who requires the guidance and support of our knowledge and skills to climb the mountain of dementia.

Sherpa originally referred to the tribe in Nepal whose social custom was to provide humane and courageous mountain guides to outsiders. (Urban Dictionary).

You know these peaks and valleys of their lives, their personalities, their life stories and can respond to their need, moment to moment. You help them without doing it for them. You do not take over but support so that the person with dementia can succeed themselves. Sometimes this requires very little support but on other occasions it requires the sensitivity to judge the moment and provide just the right amount and type of support at just the right time.

Sherpa is an honourable role and attracts great respect. It is not possible for strangers to ascend to the summit without your guidance and support. Humane and courageous. There are moments in the ascent of the mountain of dementia that require great courage and great humanity. Part of the sherpa’s role is to be aware of what the mountaineer needs from moment to moment. To think about them, to remember them, and at times to remember for them, to remember what they need and are likely to need. Encouragement, comfort, reality-check, knowledge, validation. They cannot do this without you.

More to come in the following days and weeks.

Forgetting is vital

Where is our acceptance of forgetting and not knowing? We pillory those who publicly forget as not worthy of our consideration. We deride those who cannot hold copious facts in mind ready to spew forth on demand. They are judged less than worthy and not suitable for high office if they cannot recall that facts we demand. We are impatient too with those older than us who cannot remember names of life-long friends, favorite plants and what we came into this room for.

Yet when you think about it forgetting is a vital part of human experience. If we were to remember everything we experience we would be overwhelmed with such quantity of information that we could not function, could not be present to what is happening right now, or prepare for what will happen next. Savants who have phenomenally greater capacity to remember than most of us are inundated with so much information that they cannot sift it, cannot evaluate it for importance and often have difficulty doing ordinary activities such as eating, dressing, planning ahead without help.

Studies over decades have affirmed that we can usually hold 5-7 pieces of unrelated information in short-term memory. The volume of short-term semantic or meaningful memory is greater: If information has meaning we can relate significantly greater amounts of information, particularly if it is linked in a narrative. Hence a ‘memory palace’ is a technique often used to remember large amounts of information where items are placed in locations throughout the imaginary ‘palace’.

Forgetting is important. It is crucial as we age that changes in our memory that make names for people and things more difficult to recall, that we practice, use and sustain as much of our ability as possible. But it is also important to recognize that what is important changes as we age. In my 60s I am less driven by achievement than by doing the things I find meaningful and valuable to people I love and that i judge to be important, worthwhile. I am less focused on speed than on the quality of what I do. I am also better now at nuanced conversation, at assessing what is important from what is not. I am a better listener now than when I was twenty and knew everything. Changes in memory and thinking as we age mean that older people can be valuable sources of wise, considered thinking. Gotcha journalists prize finding the ‘weak’ spot, the ‘flaw’ in political candidates. But what this shows is that they are poorly led by a lack of older journalists whose job it used to be to teach and guide these enthusiastic young journos with the benefit of experience. These editors have been sacked, made redundant. But that is a blog for another time.

Then there are those of us who are deeply forgetful, those with developing dementia who are important because they can draw us closer to each other, in relationships of mutual acceptance and positive regard for our common humanity.

We must forget in order to function in daily life. We must let go of much of what happened yesterday so that we can be present to what is happening today. We must let go of what is less important than our main concern.

If we are the leader of a group or project it is important that we have a team of people around us who can have their eyes on the detail, the specifics. Our job as leader is to formulate the vision with the team and then maintain it, develop policy and explain the rationale for our project. If we have the right people in the right jobs we can rely on and utilize those in our team who have their eyes on the detail. Forgetting enables us to rely on others and to overcome our narcissistic impulse to think we can do it all on our own. Forgetting enables us to be part of a community with a common purpose.

Forgetting is not a flaw or weakness. Forgetting is vital.

The gotcha journalist is us

Gotcha! Cries the young journalist with notes on his phone in the palm of his hand, along with every vigilante pleased to have skewered a politician on the sharp end of a pointed question. This is not the first time Albo has been unable to remember facts on the spur of the moment. So he must be an unworthy candidate, unfit for the high office of Prime Minister surely? How can we vote for a person who has trouble remembering facts under pressure? Isn’t coping with pressure a mark of quality leadership?

But then again maybe quality leadership is about more then being able to recall high volumes of information on a wide range of topics under pressure. Maybe he is a worthy candidate and the 20-something journalist has got it wrong.

This “gotcha” journalism, a feature of news conferences during the current election in Australia has revealed an assumption that exists like mycorrhizae in the life of Australia and every other western culture: That we cannot tolerate memory mistakes, that we can only allow people to be leaders, to participate if they can recall high volumes of facts under pressure and that this is what makes a quality leader, that needing others for information we do not have to hand is a weakness.

This is the product of what Prof Stephen G. Post called a “hypercognitive” culture. Memory is overvalued and other human functions under-valued to the extent that people with memory problems, who make mistakes with memory are side-lined, excluded from public discourse and edged out of employment. The under-valued functions include the capacity to work as a member of a team, to know when to call on the knowledge of others and to work with them, the capacity to be able to judge and assess information, to weigh up and determine a course of action based on the evidence. We used to call this teamwork and wisdom and it was prized. Now it appears to be despised.

This is also an ageist cultural assumption. Just as maleness has been accepted as the standard for human function until recent times, performance at age 20 has been accepted as the standard for thinking and memory function and the natural change in memory as we age has become regarded as a sign of a weak mind and a failure.

In addition to the ageist implications of gotcha questioning, there sits the idea that quality leadership is not needing others. The leadership that the young journalist seems to support is that of the solo performer who does not need others but shines by not relying on others, by not needing a team of people around him/her. This is the leader who despises forgetting and needing others as weakness. This is the hero who can slay dragons and stand victorious on the bodies of his/her enemies.

Th hypercognitivism of Stephen Post regards memory limitations as a failure, a sign of mental weakness. There is no place for people with memory limitations in this society. You can belong if you have the memory of a 20-something. You can float to the top if you can recall detailed information. This is you showing you are on top of your brief. You may not know what to do in a crisis or have the values to guide you to make worthy decisions for vulnerable others but you will be regarded as superior because you can recall those facts.

Success is remembering. Failure is forgetting. Needing others and relying on others for skills and knowledge we do not have or who others have more of than us is regarded in this hypercognitive culture as weakness. Success comes from not needing others to succeed. Be independent. Don’t rely on others. This is true strength. A sharp mind is a mark of the truly high functioning person who the young journalist embodies on behalf of us all. The gotcha journalist is us. We recoil from moments of forgetting, shrink from our inability to bring words and facts to mind.

An alternative cultural future for our nation is one in which we change over our lifetimes, in which our abilities are different to those around us and in which we need others in order to shine. In this culture differences and limitations on memory and thinking ability are recognised and valued rather than despised. This is a culture in which a person can draw others with talents together, can foster skills and celebrate knowledge, can give praise and genuine gratitude when others perform well. This person can be part of a community. We can all belong in this culture.

The hero on the other hand has a lonely life on top of the mountain, watchful for enemies, ready to highlight weakness in others. Waiting for the gotcha journalist.

Can our leaders in Australia do what is right?

There is a lack of values driven leadership in Australia. By that I mean leadership that uses values such as community, equality, care for those in need, to relieve the suffering of those we can, as core criteria in political and social decision making.

Prior to an election many political leaders make speeches about what they will do. And they appeal to values such as the above (and others such as safety/security/tough on crime) in order to obtain votes on polling day. However, very shortly thereafter the decisions they make in parliament bear little or no resemblance to the pre-election promises.

Malcolm Turnbull inspired many (including me) who thought he was going to be a breath of fresh air after Tony Abbott, and likely to resolve the plight of refugees on Nauru and Manus Island, move to a more compassionate and fair Australia, and engage in a response to climate change that would be effective and courageous.

What we got was a series of disappointing compromises to the hard-fighting right wing of the Liberal party led by a vengeful Tony Abbott and craven moderates.

You have got hand it to Tony Abbott. He might have beliefs that I abhor but at least he stands for something that is predictable and he is prepared to cop the negative response that ensues. It inspires a section of the population that need simple explanations and a rhetoric that assures them their streets, jobs and future in a largely vanilla Australia will be safe in a time of instability and worldwide population movement. Ditto Pauline Hanson. Like America’s Donald Trump they have managed to inspire people who wanted this type of snake oil. It makes them feel inspired, better than they were, and more secure and hopeful.

Some of us however, are cut from different cloth. We need different values to feel hopeful about. We are not inspired by the right wing conservative view of the world but want a future where people can be confident they will be treated fairly by the courts regardless of their ability to pay for an expensive barrister. A world in which we make national and local efforts to decrease greenhouse gas emissions, in which the refugees and their children on Nauru and Manus Island are offered a life and hope instead of despair, in which our first nations people are regarded with respect and dignity and have the resources they need to make a life for themselves in this land. A world in which those of us in poverty can aspire to improve our lot, in which women are treated equally to men, in which integrity and honest dealing are evident in the daily behaviour of our political and community leaders and others in positions of responsibility.

Where are the leaders like Oscar Romero, the archbishop of San Salvador who was assassinated in 1980? He has been canonised this week in Rome. The courage of the man to oppose the right wing militias and thus risk his life. Where are our leaders in Australia with the courage to believe in something enough to stand up for it let alone risk anything other than their political careers? Where is the consistent integrity that inspires us to be better people? Silence.

The left side of politics is no less inspiring than the right at the moment. Labor has imbibed the coolaid and have no other vision than the conservatives. They sold out on refugees and have a watered-down version of climate change response. The Greens are squabbling among themselves and the only person who makes much impression for integrity is Cathy McGowan, the independent member for Indi in north-east Victoria. She acts local and yet has an eye to just dealing on the national stage as far as I can see. But she is one person and do little without the involvement of the two major parties.

At the core of this is a cleft stick. It’s the same nasty squeeze Malcolm Turnbull found himself caught in. To satisfy the right and yet not alienate the left. But what about what is right? This does not seem to figure in their thinking and it disappoints me again and again. I wonder if they know how to think about what is the right thing to do. Ethical thinking rather than pragmatic short-term-gain thinking. They have been thinking about what is politically expedient for so long that they have lost their inner sense of what is right. They resolve the conflict that is created by this clash of left and right by choosing the pragmatic, the lowest common denominator. What is right and good does not figure in the range of options considered by our current leaders. Where is our Oscar Romero, our Xanana Gusmão?

There is in our leaders a short-sighted narcissistic need to relieve internal (party and personal) conflict to satisfy the almost instant polling of daily news feeds that fuel both sides of politics and propel leaders into expedient decision making and damage control on a daily basis. This is what all political leaders in living memory have done in attempts to remain in power: try to satisfy the demands of the mob. The shouting mob is led by the loudest superficial analysis and facile writing by major media outlets whose priority is grabbing the mob’s attention with sensationalist headlines that trivialised complex and difficult social, economic and environmental problems. See Rupert Murdoch’s goals for ousting Malcolm Turnbull.

Who is prepared to take a risk and stand for something that causes some short-term discomfort yet inspires because it is the right thing to do, e.g., release the refugees from the concentration camps we have created in order to discourage boat arrivals? Or take on the coal industry and make a significant decision to reduce carbon emissions? This may cause outrage among some. But it would be the right thing to do. To relieve the suffering of those we can. To take a stand. Our national conscience is at stake here. Particularly as we caused the suffering and despair of the refugees in the first place. Or is our national identity so polluted and self-serving that we have lost our sense of what is the right thing to do?

 

 

 

Silence maintains misogyny – time for a new standard for being a man

I am sick of hearing men blame women for walking in parks at night or dressing in clothes men consider sexual as if “they’re asking for it”. I am a 60 year old white professional man. I grew up in a family where I was taught to act fairly, to not be violent or aggressive, to be kind to people in need, to be thoughtful of others and to offer women a seat or to go first through a doorway. I read ‘Gentleman Junior’ at school, my perceptions honed on the rock of Catholic values. As a young man I joined the professional church as a seminarian and spent seven years as a priest. I left so I could marry and have a family. Those years shaped me for good and ill, in ways I still discover to this day. I work now as a psychologist and encounter daily the pain and suffering of people struggling with the lifetime effects of poor parenting or unjust, harmful behaviour from others.

I believed I was a fair, just and caring man.

However, I learned in more recent years just how ingrained is my sexism and misogyny, how normalised and therefore invisible to me are my assumptions that guide my judgments and beliefs and thence my attitudes about women’s behaviour, clothing and about them walking in parks at night.   I had it pointed out to me how much I corrected pronunciation and grammar; how I interrupted and talked over women, how  I assumed what women wanted or needed; how I took it upon myself to explain matters. And the kicker, I was hurt and angry when a woman wasn’t grateful for me doing this.

I noticed when male friends, shop assistants (not all men), real estate agents (mostly men) and tradesmen (all men) spoke to me rather than to my wife   when we were part of joint-decision making conversations.

I realised that I had long assumed that women dressed the way they did to be attractive to men. But discussing the issue with women, I discovered they choose to dress for themselves or for their female friends and less so for men. But males assume it is focussed at them. As much as this may shock some men, women are not walking around wanting sex! Mostly, from what I have learned from the women in my life, women want to live with equal freedom to men, to move around, to live their lives the way they choose. To go about their business without harassment or fear; or the expectation they will be interrupted and talked over. They want to sit on a tram or train without being ogled or touched up. Women would like to know they can walk in a park, or a street, or a laneway without being attacked, murdered and raped.

Yet, women live in a world that men seem to claim as theirs, physically, socially and sexually. It’s a man’s world. But it shouldn’t be. Men have no right to dominate the world or even a seat on a train.

I was part of a conversation recently with five males and one female, all professionals gathered for a meal at the end of a conference day. I listened with interest as the woman talked about the country she came from.   It was a compelling story of her own family’s experience. One of the men at the table came from the same country and had a very different life experience there and proceeded to interrupt and talk over her. To her credit she stuck to her guns for a few minutes, obviously used to this and able to hold her own. But he was louder and more insistent she listen to him and he dominated the conversation in volume and time. But it wasn’t a conversation anymore. And we were his audience. She fell silent. I said nothing. I saw it happening and I said nothing. Next morning I apologised to her for remaining silent. She was gracious and told me it was nothing, even made excuses for him. But what he did was unacceptable and it happens all the time. And I had been complicit in his disrespect to our female colleague.

I have always regarded myself as a caring, empathic person who was respectful toward women. But as you can see it is not the case. It was not easy to accept the way I saw   women was not in a caring nor empathic manner. I was unthinking, wrong and often misogynistic. Even sexually, with embarrassment, I can remember times in my late teens  when I had behaved in thoughtless and self-centred ways that must have put the woman I was with under pressure.

When Jill Maher was killed I wanted to march with the citizens of Melbourne who were grieved and enraged by her rape and death. I didn’t. I watched it on the news. And now that Euridice Dixon has so tragically met the same fate I am despairing about the behaviour of that man, and those men who want to blame her for walking home along the streets and across a sport’s field of Parkville at night.

After Euridice Dixon’s rape and murder I came across a Facebook post urging women to not walk in unsafe parks or streets at night, to call an Uber or taxi. The male writer wrote that he will teach his daughters to avoid these areas at night, to learn martial arts so they will know how to protect themselves against men who want to rape and kill them. He wrote Euridice should have taken a taxi or Uber, she was foolish and that’s why she is dead. ‘It’s her own fault,’ he said.

Men like this man accept that the world is the way it is and you (read women) have to adjust to it, learn to be afraid and restrict your life in order to survive. Men like this do not believe in the possibility of changing their behaviour in order to change the   world where men and women can walk about in freedom and safety. These men believe girls and women should live by different rules to themselves. They accept the idea women should limit their lives, be silent and listen to men when they speak, feel afraid or not dress as they please because they are physically smaller and less able to defend themselves.  They assume that it is only women who should make fearful adjustments to their lives while men do not. Men can dress as they please, walk where they want, sit any way they want, talk over women, take over spaces for themselves, make sexual jokes and passes at women. These men do not believe they should adjust their lives in order to be considerate of what women want, need and deserve.

So what can I do?

The spectrum of situations in which women experience sexist or misogynistic behaviour from males ranges from being talked over in conversation to criminal physical and sexual assault. Several writers have talked about the need for men to take positive action, to speak up, and I support all of that. I have been silent for too long. My wife says I am a good man. I am deeply grateful for her seeing good in me. But I have been silent in my lounge room and in life for too long on this. Too many men are mute.. Men must speak out to other men and risk an aggressive push-back or ridicule, not just when misogynistic talk happens in a pub, but at dinner with friends, on trains, trams, at work when female colleagues are talked over at meetings, or during any conversations.

Speak out when you see women closing down because a man has taken over the conversation or actively shut her down, or made a sexist remark or joke. Listen with respect. Take equal turns when conversing. Avoid speaking more loudly than women to make your voice heard. Wait to hear, give the person time to speak. This is not difficult.

Don’t correct a woman just because she pronounces a word different from you. What does it matter? Get over the need to be right, to be the person who knows more stuff. There are many ways to see situations, not just yours. A woman’s view is just as valid as yours. Maybe she is not interested in getting the name of the thing correct but in the smell or colour or taste of it and values it for its beauty. Maybe she wants to be with you and connect with you emotionally. Be open to another way of experiencing life?

Look at women in a new way, as people with a perspective as valid as yours, not as sexual beings who are restraining their lust for you! Notice how you use your eyes to stare or gaze at women as they approach, as they walk in front of you. Are you treating them as a person or a sexual object? Beauty is in the eye of the beholder, so don’t go imposing your perception onto a woman. She is just going about the business of her life.

Speak up in the small stuff, the daily invisible misogyny we all share and have responsibility for maintaining. Silence maintains misogyny. Many men are afraid of being criticised by stronger louder more aggressive males. So we stay silent to preserve our own social skins. Imagine if every good man spoke out and took a social risk. Let’s face it, do you really want to remain part of a group that stays silent and won’t support respectful relationships?

It’s time all men stood up and set a new standard for how it is to be a man, and that includes me.