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

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.

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

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

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

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.

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.

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?

https://youtu.be/6JVDj2rEOas

All the Rage is a feature film about Dr. John Sarno and others who are pioneering mind body approaches to treating chronic illness.

This film is to be shown in Melbourne at Cinema Nova Carlton on Sunday September 3rd 2017 at 6.30pm. You can listen to local practitioners and find out about local resources.

For bookings contact rosehoey@gmail.com