This brief clip shows Dr Patricia Coughlin PhD speaking about the importance of emotional experience.
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When someone you love has a mental illness
Living with a serious mental illness affects not only the person with the condition but everyone in the family. Mental illness can take many forms.
The most common are anxiety conditions such as panic, phobias and generalised anxiety; depression, schizophrenia, bipolar disorder, eating disorders, and obsessive-compulsive disorder.
A person with a mental health condition is likely to experience considerable tension and distress in their lives and this can affect those around them. Apart from this their behaviour towards others in the family and to those outside the family can often cause concern and strong feelings in those closest to them. This can be in the form of anger, fear, grief or confusion, particularly if the behaviour is aggressive, repetitive or unusual.
You may find you are grieving for the person that you once knew and now cannot see in the person they have become. This grief may need time and patience to understand as you come to grips with the changes in the person’s life and trajectory. The dreams you had for them may no longer be possible and this may take some time to adjust to.
However, it is important to remember that most mental health conditions are in the form of ‘episodes’. This means that they are not necessarily permanent or the changes enduring. People recover from mental illness and often learn a great deal about themselves in the process. This can help to become more insightful and informed and often better people to live with as a result.
If the person is your child or your sibling
It is important to have open communication in the family when a member has a mental illness.
Talking with each other about the problems other family members are having can relieve a sense of isolation that can arise if everyone stays silent and doesn’t talk about what is happening to the family. By sharing it you can work together to support and encourage each other and prevent further problems occurring in other family members.
It is common for those caring for someone with a mental health condition to experience anxiety and depression themselves. So looking after yourself with time away or just getting outside the house to walk around the backyard can be essential to maintaining your own mental health. Keep up a balanced life as much as possible with breaks, changes of scene or setting, or connecting with friends via phone or skype or email. This can relive the isolation and ‘cabin fever’ that can occur.
Always keep reminding yourself that the person themselves is still there and relate as normally as possible with them so they can keep up the bond with you as much as possible. Avoid speaking to them as if they are a patient or sick. Normal communication is very important in helping them to find their way back to you when times are difficult for them.
Be clear about what is acceptable or OK behaviour in your family home and make sure everyone is on the same page so that acceptable behaviour is affirmed by all members. For example, it may not be OK to swear or use a loud voice or be aggressive so that others feel afraid.
If it is possible you may need to gently and firmly remind the person of what is OK and not OK, always remembering to do it in a way that lets them know they are loved and accepted but that it is their actions that are not OK. Letting the person know they are loved and valued regardless, is a vital part of remaining connected with the person who is unwell. Sometimes this has to be said quite explicitly, more than you might in everyday life with someone who is mentally well.
If the person is your partner
The person with the mental illness may be your partner, so communication about everyday things that usually don’t cause a lot of tension, may become muddled easily and arguments and emotional explosions can occur. If this has happened or is likely, you may need to be the party who takes responsibility for being clear in your communication so that you can help them to be as clear as possible about the everyday difficulties and issues that healthy couples experience.
Every couple experiences differences of opinion or points of view that can erupt into problems out of proportion to the real problem. In this case it is helpful to be calm and clear yourself. Know what pushes your own buttons and work out a plan for dealing with this moment in yourself so you do not explode and add to the emotional discharge.
Having a partner with mental illness may require you to do extra things, take more time or be ready to step in to make situations OK when they feel overwhelmed. As above you will need to keep a balance in your life if your role has become that of carer as well as partner. What do you need in your life to remain healthy in your own mind and heart? It might be keeping up a healthy diet, a hobby, maintaining friendships, regular exercise, or doing something together that is outside your routine. You may need to talk this through with someone you trust to get some ideas.
Be vigilant about domestic abuse (verbal, physical, sexual, emotional and financial) and be ready to care for your own interests by making yourself safe if that is necessary. If you have children and their parent is the person with the mental illness you may need to spend time explaining or debriefing with them about their experience or understanding of what has happened or just explaining the condition in ways that make sense to the growing minds. Often children do not need a great deal of information or very complex information. Rather they need honesty and clarity in small bites that satisfy their need to understand. They will come back later when they need more information.
Stigma
The way mental illness is viewed in society has improved a lot in recent decades. However, there is still some stigma or prejudice against people with a serious mental illness. You may be concerned about letting people know that your relative or friend has mental illness. Choose wisely to share information with people you trust and whose judgment is not going to be prejudiced but is more likely to be helpful and supportive.
When people ask, you may need to work out a way of explaining the situation in a manner that is faithful to the person you love and helps the other person to understand.
Get help from professionals
There are many organisations available now to help with information, ideas and practical support. Examples include beyondblue, and Mental Illness Fellowship, which provide education and information for carergivers, and for people with mental illness.
You are not alone and you will benefit from joining in education and support groups so that you can gain from the experience and wisdom of those who have gone before you.
Express your feelings?
I once had a client who said when I asked what feelings he felt, “I don’t seem to have feelings”. This dismayed him and his eyes began to fill up. Slowly it dawned on him that he did indeed have feelings and that he experienced them so rarely that he thought he had no feelings at all. This was normal for him.
On the other hand I have also had clients who seem to have so much feeling that they come in weeping or angry and have difficulty talking without exploding in tears or rage. Usually it is tears as we are not all that comfortable to express rage in front of others.
Feelings are an important dimension of being human and they are present in all of us. If we are biologically human we have feelings. I am sometimes asked, “But if I have feelings, tell me what they are because I can’t feel them?” Examples of feelings include love, sadness, anger, rage, gratitude, guilt, grief, and anxiety.
How we experience our feelings can vary from person to person. In some households you may find that there is so much feeling expressed that it seems chaotic and out of control, even unpredictable. This brings us to a distinction. There is a difference between EXPRESSING and EXPERIENCING.
Expressing is when we do or say something with our feelings, i.e., Cry when we are sad, or hit or shout when we are angry. This becomes aggression. Anger is the feeling and aggression is the action or words. Experiencing on the other hand is when we have the physical experience of the feeling inside our bodies, without expressing it.
To help understand feelings better here we can identify three parts to a feeling. There is the COGNITIVE label or thought that goes with a feeling, i.e., we know we are angry and recognise it.
The second part is the physical experience of the feeling in our body. This is slightly different for each feeling. Sadness, feels heavy, comes into our chests and causes us to fill up with tears and crying so our nose runs and we have tears. Anger on the other hand is hot and it rises from our stomachs into our chest and up our spine into our shoulders and arms, We form fists and clench. We feel stronger and breather faster in readiness for action.
Anxiety is different again. In anxiety we have a sense of something coming from above and pushing down, raised heart rate in palpitations, dry mouth, shakes, tight chest causing sighing, increased need to go to the toilet to pee, and muscle tension in various body areas. Anxiety can also go to our gastro-intestinal tract, causing pain, nausea and bloating. If anxiety becomes chronic the muscles can become stuck in a tense state causing significant pain. Third, anxiety can affect our senses so we have temporary visual problems, hearing difficulty, or a sense of feeling drifty or in some cases blank out altogether for brief periods, leaving us with no memory for parts of conversations. Other words for anxiety include stress and tension.
The third part of a feeling is the IMPULSE. This is an urge we have to act in a way that releases the rising energy generated by the physical and cognitive parts of the feeling. This may be the impulse to cry, to hit, to shout, to hug, to walk up close to someone you love, look them in the eyes and tell them you love them.
When a feeling is experienced it is all internal, not communicated to others and is not expressed. All feelings can be experienced without expressing them.
When a feeling is expressed it is discharged or exploded out and others can see it or hear it in the actions that we have the urge to do or words we want to say.
An example is anger. This is the feeling. It is internal to the person and is experienced as heat rising like a volcano. As described above it causes a rising sense of strength and the impulse is to strike out, to grab, to throttle or to kick. We rarely give expression to this impulse so most of the time people around us are safe. However, some people have trouble containing the impulse to act and they express the feeling in aggressive or even violent actions, i.e., road rage.
Some households have a lot of expressed emotion flying around. They shout at each other, swearing and calling each other names when they feel anger toward each other. These are rarely emotionally safe places to grow up. Children form defensive shells around themselves, learn how to handle feelings and intimacy from watching their parents and other adults and do the same themselves. They are often punished for it by the very parents they are modelling.
Couples can sometimes engage in expressing feelings to each other and this can be destructive if it is done in the heat of the feeling and without respectful concern for the emotional safety of the other person.
Expressing feelings is not as healthy for us as experiencing the feelings, knowing what they are and understanding the meaning of the feeling for us. This is all internal and only then does it lead to external actions toward other such as raising a concern, sharing thoughts and having a discussion together to reach an understanding of an issue that concerns you both.
For example, people will say to me, “But what do I do with it once I experience it?” The answer is understand it. If a couple are angry with each other and discharge their anger by shouting and calling each other names, swearing at each other or making statements about their past behaviour in anger or rage, the feeling is expressed but is this helpful? Not likely. The most likely result is that there is increased distance between the people and they do not communicate easily. There is silence and hurt. This can create loneliness and isolation.
The other alternative may be if both parties notice they feel angry, experience it internally, understand why they feel angry, understand the importance that the other person’s actions or words have had for them and only then once the feeling is understood, they engage with the other person to share their thoughts and that they have felt angry.
This is much more emotionally safe for each person. Words are not said in anger and people are not hurt intentionally because the love we have for the person is also felt alongside the anger. It is true that we can experience more than one emotion at a time. I have had clients say to me, “If I get angry that means I don’t love them anymore.” We can feel angry at the people we love most in the world.
Experiencing feelings first is more emotionally safe, better for relationships and better for us individually than expressing emotion without the experience.
See what feelings you can recognize in yourself. Monitor your own inner emotional life more closely by noticing what changes in your body when you have interactions with others. How do you feel when you are waiting for your partner to come home? Love? Anger? Sadness? Joy? Gratitude? All of the above? Nothing?
Expressing or discharging emotions does not communicate feelings and create understanding. Rather it pushes people away and creates hurt and loneliness.
Experiencing feelings enables us to create intimacy and closeness with others that is respectful, safe, and enjoyable. It also enables us to be productive in our work because our energy is available for creativity and effort. Finally it enables us to experience pleasure and enjoyment in our lives.
I was at a funeral last year and it struck me that sadness
I was at a funeral last year and it struck me that it is acceptable to cry at a funeral if you were close to the person because the person was important to you. But if the person was not particularly close and you still feel like crying you may find yourself thinking that it is not OK because you were not close enough to them to justify feeling so overwhelmed and sad.
I am interested in the fact that we put such restrictions on when and how much we can feel sad. Only if we are close enough, only if the loss was big enough to justify it etc.
This flies in the face of the fact that sadness is just that. Sadness. It is the normal and natural feeling we have when we feel loss of something valuable to us, perhaps loved. There may be many reasons we feel sadness come up in us at a funeral of someone we were not particularly close to. It may be that it touches off memories of someone we were close to in the past. Or it may be that we saw someone else crying and that was enough to trigger our own sadness. Or it may be that we are feeling loss in some other area of our lives, other than loss of someone by death, i.e., loss of a job or moving to a new town and feeling sad about losing the old town. Having an argument with your spouse can make you feel sad about the distance it creates so you find yourself crying.
It is important here to distinguish between reasons we cry. We cry because we are sad. But we also cry because we feel overwhelmed by strong feeling such as anger and so we discharge it by crying it out, as if the tears wash the feeling away. It can seem like a relief afterward but this relief is due to the fact that we were becoming anxious/tense about the feeling becoming so intense. We felt overwhelmed and so cried to get rid of it. This is not as healthy as the tears from sadness.
Sadness does not have a calendar to it so as with all feelings, it doesn’t know that the death was a long time ago. It just knows that you feel sad right now.
You do not need to have a good reason to feel sad. Your psyche knows you feel sad so you will feel sad and then once the sadness has been felt in its entirety you will find the insight comes that helps you understand what it was about.
Emotions do not have reasons. The reasons come afterward to help us make sense of the feeling.
So sadness is a valuable emotion. It tells us how much we have valued something or someone we have now lost. This is important in loving relationships that we can know how much we have loved those we lose in death. Sadness tells us how much we love.
Gratitude is an old fashioned word we don’t hear much in everyday conversation
Gratitude is an old fashioned word that we don’t hear much in everyday conversation these days. Yet, it is the oil that greases the wheels of human relationships and makes us able to get on with each other so much more smoothly than we do without it.
Gratitude is simply thankfulness. I have noticed in some relationships people do not express gratitude for anything others do, but accept the kindness or thoughtfulness of others as if it is just a given, something to take for granted, that is always there. Some even seem to expect kindness and thoughtfulness and become annoyed when it is not readily available, but do not express gratitude for it when it is offered.
Being thankful is a way of recognising that what someone has done for us has been noticed and we are better for it. It recognises that the other person is important and offers them this recognition as a way to say, “I see what you do for me”. In effect this is like saying, “I see you and I value you”.
Close relationships are built on a capacity to accept another person in your life and allow them to affect you emotionally and psychologically.
Gratitude is a way to recognise that the other person has done something that has a beneficial effect on us, and we welcome this closeness. We welcome them into our lives.
Expressing gratitude for what others do for us is also a recognition that we are not islands, self-sufficient to ourselves, but need others and rely on others for much in our lives. These acts of gratitude may be for simple acts such as that someone has cooked a meal for us, or offered to drive us somewhere, or folded our clothes for us, or asked us if we would like a cup of tea/coffee.
Being grateful is a way of recognising the other person’s thoughtfulness, valuing it and letting them know that you understand you are better off because of them.
Often in long-term relationships it can easily slip into an acceptance that the other person in the relationship does what they will do and will continue doing what they do, and that we don’t have to keep thanking them for it. However, this can lead to the kindness, thoughtfulness and generosity of others becoming invisible and not being valued by either party. The solution is gratitude.
The type of gratitude I have in mind is regular small thanks for regular small things. Each time someone does something for you thank them for it. Thanks for making breakfast. Thanks for taking the bins out. Thanks for listening to me rant on. Thanks for tea. Thanks for doing that for me.
Thanks for reading.
Feeling is not doing
We are often afraid of our anger, that feeling anger means we should be guilty. But what have you done by feeling it? Nothing. Feeling is not doing.
We frequently get feeling and acting mixed up as though feeling angry means we have been aggressive. Let’s get a few things straight. Anger is a feeling and aggression is an action or words. One is interior (anger), and the other is exterior (aggression).
The feelings we have are a normal part of being a human being. They are a physiological response we have to experience and so are an integral part of relating with other people, the world around us and our own inner experience.
Take for example, the sadness we have when we lose a person we love in death. This is a normal reaction and not something pathological. We grieve because we have lost someone we loved. The grief is an indicator of the depth of love in us for that person. In this way sadness is to be welcomed because as painful as it is, it is never the last word. Love is.
Often when we have lost someone in death there is also anger toward the loved person. So we feel sadness and anger and love, all mixed in or one after the other in close succession. This can be confusing and cause guilt in us as if we are being unfaithful to the person by being angry with them. We feel what we feel – no judgment. It just is. if you feel angry about them leaving you in death or for any other reason then that is what you feel. Once you feel it deeply enough you can get to the bottom of why you feel angry. Just give yourself enough time to feel all of it without loading it up with judgments.
Keep it simple. Feelings are OK because they are a natural process we experience as much as breathing is a natural process. Feelings are like our emotional skin to the world.
If we let feelings be themselves, feelings will come and go. I often hear people say (as a justification for not crying) “If I start I won’t stop”. This is not sadness talking, it is anxiety. Anxiety that you will be out of control if you let yourself feel sad. So we avoid it. This has the makings of depression if we sit on our feelings and won’t let them be felt.
This brings me to my last point. Experiencing is not expressing. This is the difference between anger and aggression. Anger is an experience, and aggression is an expression of the angry feeling. I am encouraging you to experience rather than express your anger or whatever other feelings you have
Notice in yourself how you relate with your own feelings. How much anxiety do you have about experiencing (not expressing) your feelings? Give yourself close attention so you notice the physical experiences that make up your feelings. This means practicing self-monitoring, or self-observation. If you don’t do it naturally, you may have to learn to do it by practicing is regularly, daily and just notice your inner sensations. What do I feel right now?
Take
Anti-depression habits to support your wellbeing
Are you dragging yourself round and saying to yourself, What is wrong with me? Pull it together!”.
As Christmas comes around we can think we have to feel the ’joy of the season’ if the advertising is to be believed. However, some of us do not feel joyful or even neutral. In fact we can feel blue and down in our mood and for no apparent reason.
Since beyondblue made depression better known in our community more people have a better understanding that feeling down or blue or low in your mood for extended periods is not the normal way we should.
Depression is much more common today than it was in the community 50 years ago. Even though we are more likely to talk about it today than we did 50 years ago, more people are experiencing signs of depression.
Depression is often misunderstood so let’s be clear about what it is and what it is not. A diagnosis of depression will be made if mood is low for at least two weeks, if your self-esteem is low, you are extra critical of yourself, you feel unreasonably guilty, you have feelings of being worthless, you have no energy and feel lethargic, your appetite has increased or decreased, you can’t concentrate, your sleep is poor, you have trouble getting to sleep, you wake repeatedly, and/or you wake early, you have lost weight without intending to, or you find yourself thinking about suicide.
If you more than one of these signs you should contact your GP to speak about it. Perhaps a friend may have spoken to you about changes they have noticed in you. Depression is often not recognized by ourselves but can be noticed by others around us.
Depression is not sadness. Feeling sad is a normal part of life. Depression is not normal.
Feeling like this can be very unpleasant and sometimes painful to feel so low in your mood. It is best to go to your GP and have them ask you a series of questions to establish what the possible causes may be and how life is for you right now.
It is important to remember that sometimes depression happens for no particular reason. There may be an interaction between the events in our life and the personal history or our biology that causes a change in the chemical levels that shape how we feel about ourselves, our life, future and others.
Treatment is often a combination of medication and psychotherapy. For mild depression psychotherapy alone may be sufficient to relieve the low mood and other signs.
However, when depression becomes more severe it is important to use the tools at hand that have proven effective. The evidence suggests that medication plus psychotherapy is the most effective way to treat symptoms of low mood and other signs of depression and to ensure that you do not have further problems in the future. This is called relapse prevention.
There are some strategies that can be useful for all of us in preventing depression. First, pay attention to yourself – do not neglect yourself. Be aware of your mood. How do you feel right now? Most of us do not have a clue and so become alarmed when we notice we are feeling low.
Second, exercise regularly. Exercise has been shown to have a beneficial effect on mood. Several times a week go out of your house and walk at a pace that makes your heart go a little faster. Some say “walk like you’re late”. For 20 minutes three times a week. Check it with your doctor before you walk if you have medical conditions that concern you.
Third, socialize. Have at least one conversation, however brief, each day. This keeps you connected to others. If you don’t feel like doing it, make yourself do it. Form the habit. Do it every day for six weeks and it will become a habit.
These are anti-depressive habits to support your wellbeing.
7 rules for mental health at Christmas
What is Christmas dinner like at your place? Advertisers would have us believe we need a full table, happy smiling people all the time, all decked out in the latest clothes and having a wonderful time. Unfortunately, or maybe fortunately you might say, the real family Christmas is often far from that fantasy.
Christmas is different things to each of us and there is no one right way to celebrate this time of the year. It is often when we place unrealistic expectations on ourselves that we end up creating tension, anxiety, depression and withdrawal for ourselves and difficulties between us and those we love.
Expecting it to all go smoothly and have no difficulties means we can be overwhelmed when it doesn’t go to plan.
So Rule #1 is to keep your expectations realistic. This can avoid much anxiety and depression that can occur because we don’t met these unrealistic expectations. Family dinners are often tense times and just because you have arguments around the table because someone did not bring the food they were to bring doesn’t make it all a failure.
Rule #2. Life is not black or white, it is often very colourful and mottled. At Christmas, it can be easy to think in terms of fantastic or dreadful. Keep it within reasonable bounds and remember that life is varied and it is normal for life to be complex and colourful.
Rule #3 is that just having one problem does not make Christmas a failure. Just because the turkey didn’t come out the way you wanted or you didn’t get the presents you wanted or Aunt Joan cannot come for Christmas, doesn’t make it a failure. This can help you keep it in proportion and not become catastrophic in your thinking.
Rule #4 is be prepared to let others help you. Do not try to do it all yourself. Being a martyr for the cause is not going to make Christmas any more enjoyable and probably will make it tense for those around you as you try to cope and possibly unpleasant as they deal with your tension. Engage others to do things to help you prepare so it is a team effort.
Rule #5 is make a list of what needs to be done so you can be organized and plan ahead. This makes for a calmer environment for everyone and those around you can be involved in doing what needs to be done in a timely way.
Or offer to help the hosts. This can give you a sense of inclusion and no doubt your hosts will be very grateful.
Rule #6 stay in the present. Avoid flying off into the future in your thoughts about Christmas and worrying about details and events that have not yet happened. Stay in the present. If it has not yet happened it needn’t take up your mind.
Rule #7 think about what you can control and avoid worrying about what you cannot. If you cannot control the outcome of something don’t worry about it. Other people are responsible. If you take over it makes other people less responsible and in the end, less accountable. You doing it all, only makes others more childlike around you, instead of more adult and equals. If you want cooperation you must give people responsibility.
In the end remember, there are no rules!!
Appreciative Inquiry as a new method of response to behavioural and emotional difficulties in dementia
What could we do in dementia care if we were not focused on problems and deficits, but focused on what the person can still do and wants to? Have we become so focused on what is wrong with the person that we forget who they are, who they can be?
I don’t know about you but if I am surrounded by people who love me and appreciate me for who I am I am a better person than if I am surrounded by people who are not interested in me or have misconceptions of me. What is it like for the person with dementia who maybe can’t use words to understand and communicate their own feelings and experience anymore?
Most ‘behavior management’ (don’t like that term anymore) is focused on what is wrong, the problem caused to others. Usually the person themselves is regarded as the problem by the time a professional is called in to ‘solve’ the problem for them. This loses sight of the person and who they are disappears under the weight of negativity, frustration and judgments about the person.
I suggest we may be better to go in a different direction. Let’s look to Appreciative Inquiry.
Appreciative Inquiry focuses on approaching organizational change from a standpoint that the organization is a “solution designed in its own time to meet a challenge or satisfy a need of society” (Cooperrider and Whitney, 2005). This approach focuses on what is working well and effective in organizations rather than on seeing the organization as a problem to be solved. In this way I think we can approach the individual person as a solution designed in its own time to meet a challenge or satisfy a need. This is indeed what the human brain is constantly trying to do. It is trying to work out how to survive, how to make sense of the massive inputs it receives from the world around it so that it can keep the person alive long enough to pass its genes onto another human being. The desire to stay alive is phenomenally strong in the human being.
As the human being faces the threat of diminishment by a condition that destroys the very organ that is designed to keep it alive, the human being goes into survival and responds to this by seeking out attachments, by fighting or fleeing, by behaving in ways that make perfect sense as efforts to ‘make sense’ of the confusing world and to simply survive.
Traditionally in modern dementia care we take a psychiatric approach in response to this range of actions that people engage in when threatened with annihilation. We call it a symptom of an illness (Behavioural and Psychological Symptoms of Dementia – BPSD) and medicalise the normal reaction into an abnormal sign of illness; and ‘disturbed’, or challenging’ or disruptive’ all of which says more about its effect on us and our perceptions of it than anything about the behaviour itself. We gather evidence of this problem and label it aggressive, wandering, repetitive, vocalising, mood swings, agitation, or attention seeking, or manipulative, or clinging. And then we medicate it away because if it is a symptom then medical solutions are called for. So we use psychotropics to modify the person so they don’t do these behaviours. The unfortunate side effects that we tolerate are sedation and confusion, dull emotions and slowness. But its a small price to pay for peace and quite, isn’t it?
Appreciative Inquiry uses 4Ds as a process: Discovery, Dream, Design, and Destiny. Lets look at each a little as they might be applied to an individual ‘behaviour management’ issue.
Discovery:We seek to understand the situation by engaging all stakeholders to articulate the strengths and best approaches to responding to this person. In this way the person can begin to come alive in our minds and the ‘problem” can diminish in our perceptions. What works? What is the best of what is and what has been in this person and our time with them? Let’s ask what is working in this person’s life right now that we want to maintain? What is going well? What are the threads or aspects of this person’s life that they and we want to maintain? What does the person say is going on for them, from their point of view? Rather than focus on the ‘problem behaviour’ let’s focus on the success this person has in functioning in the face of a condition that undermines their very confidence in their own perceptions and memory for reality.
Dream: What is it we want? What is the result we want here if this is what is working for the person and for us? What is this person calling us to do and be with them? What do they need from us?
Design: Create ‘possibility propositions’ of the ideal relationship with this person, articulating an ideal arrangement of people, routines, relationships that we think this person is capable of engaging in and drawing upon and magnifying the positives about the person to realise thsi ideal relationship and situation with them.
Destiny: Strengthen the affirmative capability of the situation, organisation, family, enabling it to build a hopeful and sustainable momentum for positive change and high performance of excellent human relationship.
As Cooperrider and Whitney state a crucial step in this process and centre of the process is affirmative topic choice. this is what will define and direct the process. If we remain focused on the topic as a problem for everyone we will ultimately see the person as a problem and not just what they are doing. However, if we can reframe the topic in an affirmative way the topic can become an agenda for relationship with that person, for improving their quality of life and an agenda for care actions and care planning.
Lets have a look at an example: Monique is refusing to come away from the door to the aged care home stating that she needs to go home to her mother who said she has to be home by dark or she will be in big trouble. She is packed and is not prepared to back away. Staff have been approaching her and trying to cajole, to persuade to lie to her, to bully her and most recently to threaten her and physically manhandle her in order to get her away from the door. She is not letting anyone get through the door until she gets through the door first. She doesn’t believe anyone and is firmly convinced that her view of things is correct and others are liars.
If we take an AI approach we begin with Discovery by asking what is going well in Monique’s life. What is working in her care? You might think that not much is working in her life right now and she may say the same thing. However, it is clear that she has a strong attachment if fearful to her mother. This is a positive. A child wants to please their mother by doing the right thing and right now she sees herself as a child needing to go home to satisfy her mother and so avoid trouble. Also a positive is that she has enough ego strength to resist the efforts of numerous cognitively intact people to maintain her stance. This is a positive. Her brain has not yet relinquished its ability to protect its own interests. What might be construed traditionally as resistiveness may be reframed as ego strength and capacity for relationship. We want to assist her to sustain these abilities.
Dream: We ask what we want. What is the desirable future state we want? We want the door way to be open and we want Monique to be contented and peaceful. Happy is too transient a state. Contentment may be more achievable and desirable. The other thing to do is ask what Monique wants. She clearly wants to leave in the short term. She also wants to see and be with her mother, to be attached or connected to her mother. She wants to be a good daughter, an obedient daughter with a satisfied mother who is not angry.
Design: We want to be able to create strong attachment relationships in which Monique feels safe to be angry and afraid and sad, where her emotions are acceptable and it is OK for her to be wanting her mother. We want to have people in our staff group who have the capacity to be unafraid of Monique’s rage and sadness at not being able to get what she wants and who are not overcome with fear at her rage and sadness, who can stand with her at the door and remain in relationship with her rather than pull her away. This may not heal the wound in Monique but it may contribute to a more peaceful life for her. This is a possibility proposition. It is an ideal and it is what we work toward achieving for Monique and for us.
Destiny: We work to select and training staff who have the personal capacities and motivation to achieve our goal of an emotionally robust staff group who can stand with people in their distress and empathise and be in relationships that are equal with enough peace and enough contentment.
Appreciative Inquiry can be a useful way to reframe the current medical model of ‘behaviour management’ and the symptomology of BPSD into a more humane and affirmative, healing and hopeful approach to life with dementia.
Socio-emotional consent, sex and people with dementia
Sexual interactions and people living with dementia is a topic that causes much discussion and concern among family members and professionals who are asked to guide or support decision making about these important interactions.
For many people who live with dementia sex remains and in some cases becomes an important part of their wellbeing. They want to experience sexual interaction in some form. In addition to the issue of where the interactions occur (i.e., public situations vs private) the question that causes distress for many is that of consent. If the person is not capable of giving consent because of their diagnosis how can they be regarded as capable of saying yes to something for which we normally require the capacity to give consent?
My proposal is as follows. Although the person may not be able to give full legal consent such as required by law to sign documents or enter into contracts, they may still be able to provide what is known as implied consent. This is the type of consent recognised by law that is based on signs of the person’s behaviour and words that imply or communicate their intent or willingness to engage in the activity. The experience they have is often at an emotional level of attraction or contentment, or anxiety about being in close proximity to another person who may or may not remind them for important attachment figures such as a spouse. In this situation it is not simply sexual experience that is important but intimacy, the experience of closeness and bond that expresses love and affection. This is the social and emotional context of them being able to signal to you that they either want to be in the relationship/interaction or they do not.
The signals they give you by their behaviour are important signals of their internal willingness to participate or not. These signals may include: leaning toward the other person, moving toward the other person, relaxed posture, making and holding eye contact, touching in a relaxed or affectionate manner, smiling at the person and others while with the other person, being content with receiving touch from another, and talking in a relaxed tone and volume. These are the signals that they wish to engage or remain with the interaction. If you do not see any of these signals the interaction should be interrupted.
The signals that the person is not OK or willing to remain in the interaction may include: staring ahead, lack of verbal communication where you would expect there to be some, tense body posture or rigidity, lack of eye contact, movement away from the person, passive cooperation, tension in the voice, other overt signs of anxiety such as shaking, chest pain, headache, and trembling.
Some of the second group of signals above are indicators of freezing that are commonly associated with traumatic reaction to overwhelming experience and may indicate that the person is experiencing something overwhelming that they do not have the words to communicate to you or to the person they are with. They may freeze and show only passive cooperation and no overt signals of distress, i.e., they look calm but on further examination they may not be calm but frozen with fear. What you see is the absence of what you would expect to see if there was overt distress or pleasure. You see nothing. If all you see is calm and no signals of overt pleasure or enjoyment you should interrupt the interaction until such time as you have enough evidence to facilitate it continuing, if at all. No one has the right to impose themselves on others regardless of their diagnosis or marital status.
Some may see this move to interrupt as overbearing paternalistic control. However, the action is required by our duty of care where there is a risk to emotional wellbeing. The risks must be weighed up. What is the benefit if i facilitate this relationship by not doing anything? What is the risk if I interrupt it and one of the parties is annoyed and the other is relieved and can no relax and enjoy him/herself?
I hope this focus on socio-emotional consent and the listing of specific behavioural indicators may help in guiding people to make decisions that either facilitate in the right place or interrupt in the right place, all for the wellbeing of the people involved.
Bernie McCarthy