Communication breakdown in caring for seriously ill patients

This talk was given to staff at CLSC René-Cassin, 1996-3-28.

I am going to tell you a story. It’s about Mrs. A., who is 86 years old, a widow living in her own apartment since her husband died 12 years ago. She and her husband were both born in Poland, and were in concentration camps during the war. Each had family members killed in the Holocaust. Individually, they came to Montreal after the war, and met each other here. Her husband became successful in the garment industry, and she stopped working as a secretary when she became pregnant with her first child.

Mrs. A. nursed her husband at home when he became ill with diabetic complications, until he died. At that point, she extracted a promise from her daughter and son that they would not put her into a nursing home. Now Mrs. A. can no longer go out because of her arthritis; she recognizes that she has memory problems, and is fearful of using the stove, worried that she might forget to turn it off and start a fire. She depends on her daughter who shops for her, cooks extra meals which can be heated up in the microwave, and who stops in daily after her work to tidy up and visit before going home to her husband and children. She also bathes her mother twice a week. Mrs. A.’s son, also married and in business for himself, looks after her financial affairs and tries to visit several times a week, although this is less predictable because of the demands of his business.
Mrs. A. calls her daughter at work several times every day to tell her about her arthritic pain and to ask her when she will be coming over. She also pages her son on his beeper frequently. If he doesn’t call back right away, she will page him again. He thinks it’s an emergency, and drops whatever he’s doing to call her.

I saw Mrs. A. and her children in the Psychogeriatrics Clinic at the Jewish General Hospital, where I work.

The son and daughter brought Mrs. A. to us, feeling she was depressed. I asked if the mother was getting Meals on Wheels, if she was getting home care help from the CLSC or elsewhere. No, they said, Mother doesn’t like their food, and she refuses to have strangers in the house.

I felt the daughter was much more depressed than her mother, and was at risk for burnout, if not a breakdown. Her marriage was already in trouble. The son was considering moving to Toronto.

The topic of my talk is communication breakdown—what happens between caregivers and their seriously ill family member that gets in the way of communication. And because I’m a psychiatrist, I’m going to concentrate on emotions and their role in communication.

I’m going to start by talking about what happens in early life. Most of you are parents, so you will have observed this in your own children. How do babies communicate before they learn to talk? They utilize non-verbal communication: facial expressions, sounds including crying or laughing, body language. But even before these communication modalities, more basic mechanisms are already at work: touch, taste, smell, vibration.

Besides being a psychiatrist, I am also a systems engineer. One of the basic tenets of systems theory is that any system can be completely described by looking only at the inputs and outputs of the system. Thus, the system itself may be as opaque as the proverbial “black box”, but if you know how its outputs relate to its inputs, you know as much about the system’s inner workings as you need to.

People are like systems. Although we can look inside people, including their heads, to a certain extent with x-rays and cat scans and MRI scans, we really don’t understand very much about how the brain works. But we are able to study a person’s outputs, that is, behaviour; and we can relate those outputs to the inputs that same person experiences; that is, the sounds, sights, tastes, smells, and touches he or she is perceiving through their senses.

So if we look at a person as a system, we have inputs through the sense organs, and outputs which are behaviours. What sorts of behaviours are we talking about? Well, obviously the things that a person might do, such as yawn, have a drink of water, take a bath, make love, hit somebody; these are all behaviours. So are all the things a person says— “Please take out the garbage, dear”, or “I hate you!” are behaviours. Can you think of any other behaviours? What about more subtle things, such as an increase in blood pressure or in heart rate? Wrinkling your nose when you smell something offensive?

So what’s my point? The things that I have been talking about, these behaviours, they’re all methods of communication. Communication is something that happens between two people, or between two black boxes, if you prefer. Or perhaps more people, like in a family. One person’s outputs, or behaviours, become inputs for everyone else. For example: the successful businessman who becomes senile, remarries, and decides to rewrite his will, leaving everything to his new wife. The whole family gets upset, right? What is the communication that is going on here? Gets pretty complicated, doesn’t it?

Now, remember my saying that you can completely describe a system by its inputs and outputs? There’s a little complication: time. A system’s outputs are a function not only of its inputs right now, but of all the inputs it received in the past. From time zero, we would say in engineering terms. With people, it’s the same thing. People learn, they have memories, so that today’s behaviour is a function not only of what is happening today, but of everything that the person has experienced since birth, or more likely, since conception.

For example, infants learn to associate being fed with pleasurable feelings: of being held and cuddled, of a sweet taste in the mouth, of the sensual qualities of a nipple in the mouth, of the smell of mother. Later in life, we re-experience the pleasurable emotions remembered from our infancy, each time we eat. This can, of course, also be problematic for some people who turn to food whenever they feel lonely, or hurt, or angry.

We can diagram the communications as follows:

So we have a complicated situation, with multiple modalities for communication, including verbal and the many flavours of non-verbal; multiple receivers, including eyes, ears, nose, tongue, and touch sensors all over our bodies; multiple transmitters, including the vocal cords and all the cavities in the nose and face for verbal communication, the many muscles in our faces which are responsible for facial expression, the apocrine sweat glands in our armpits and pubic areas which send out smell messages, called pheromones, which let others know when we’re sexually aroused, and so on. Sitting on top of all this, literally, is the brain, the black box which controls everything.
Boy, there’s so many things that can go bad, and louse up communication!

Let’s consider a typical situation: you are a caregiver, suppose for example the dutiful daughter of a mother who has developed Alzheimer’s disease. Even if she doesn’t have cataracts or a diabetic retinopathy affecting her vision, or need to wear a hearing aid which is forever getting lost, her memory is so bad that she cannot remember what you told her just two minutes ago! If you talk too fast, she gets muddled, and she continually gets distracted by whatever! The last straw is when she insists her long-dead mother is alive and expecting her, and you must take her there right this minute, 3 am in the middle of winter, and who needs a coat? Exasperating, right? Communication breakdown, right?

Who among you would feel frustrated and angry in this situation? Can I have a show of hands?
I’m not going to talk about the various things you can do to improve communication when eyesight or hearing deteriorate; when brain functioning and memory become impaired, there are various approaches which can help, and I’m sure you know about the various sources of information available to you.

I’m also going to avoid discussing aphasias and strokes and Parkinson’s and all the other conditions affecting communications. Anita Silverman will be speaking about them.

What I will talk about is the effect of emotions on the communication process. Does emotion get in the way of good communication? Boy, I sure hope not! Listen to this: (read from the text, speaking in a flat monotone):

“The earlier stages of the aging process seem like irritating character flaws. The family accuses the aging member of becoming irritable over minor changes, of trying to control things too rigidly, of never wanting to do things, of being hypochondriacal, of only talking about the past, of being stingy and conservative, of demanding attention.”

Contrast that with this: (Read with plenty of emotion):
“It is only after that person begins to get confused and to forget things that the family realizes that the brain isn’t hitting on all cylinders and the irritating habits were efforts at holding on. Then the old person begins to ignore personal hygiene, to lose things, and to hide things…. He or she may fail to cash checks, may put the bills in the refrigerator, and save old newspapers because they might contain something important but they can’t remember what.”

I hope I was able to demonstrate that emotion can improve communication. By putting emphasis in my voice and facial expression, by choosing expressions or vignettes which hit your humour button, I am supposedly influencing you to be more attentive, and to remember more of the message.

As newborns, our senses are not yet well developed, so touch and smell predominate in communication. As we get older, sight and hearing become more acute, and the brain mechanisms controlling these modalities become smarter. At around the age of one, speech begins. The capacity for symbolic thinking; that is, being able to refer to a person or an object mentally by using some sort of mental representation, a mental image or a word, seems to develop at around two or three years of age. This last capacity, for symbolic thought, was probably built in by evolution to permit verbal communication. I suspect that at least initially, this was consciousness.
What I mean, essentially, is that consciousness is necessary only for verbal communication. All the other communication channels work perfectly without any conscious awareness on our part; they operate subconsciously. Furthermore, they operate instantaneously, in real time (another engineering expression!). Because they don’t require consciousness, there is no reason to believe that any brain connections between these communication modalities and the brain centers of consciousness ever developed. Take our sense of smell. For dogs and many other animals, much of their behaviour is entirely controlled by smell. They don’t think about it, they just do it. People have the essentially the same connections between the nose and the rest of the brain that dogs do, so there is no reason to believe that people’s behaviours are just as much controlled by smell. What makes the difference is that the more advanced parts of the brain, such as consciousness, inhibit the more primitive, reflex behaviours.

Thus, when we become aroused sexually by the smell and sight of an attractive member of the opposite sex, we don’t immediately attempt to mate with that person as our instinctive reflex would have us do. We are inhibited from doing so by our ego and superego, using the psychoanalytic jargon.

What happens in the person with Alzheimer’s disease? The process is the reverse of what happens to the developing infant. Consciousness, verbal memory, symbolic thought are the earliest victims of this brain-destroying illness. After that, speech deteriorates, followed by the non-verbal communications modalities of facial expression, touch, and smell. In the final stages, when the person is no longer able to control their movements, their bowels or bladder, like the newborn, communication is restricted to babbling or crying.

During this slow but inexorable decline, painful for everyone, the inhibiting effects of the higher or more advanced brain functions on the more primitive reflex behaviours is lessened. What this means is that, paradoxically, non-verbal communication becomes more effective, not less, at least for a period of time. Consequently, the person with Alzheimer’s disease will be better at detecting our emotions which we communicate primarily in non-verbal ways, and they will respond with more strong emotional reactions of their own.

Thus, the family member may display anger, sadness, fear, guilt, panic, and joy with surprising rapidity and intensity. Moreover, any of these feelings may be replaced with astonishing swiftness by another, even contradictory emotion. This happens because the person has become more sensitive to non-verbal communications from us, while at the same time less able to inhibit their instinctive reaction or to place it into context.

So what triggers these emotional reactions? We, the caregivers, do! Very simply, our own emotional states, which we communicate non-verbally, through facial expression, body language, tone of voice, touch, and smell.

You recall the dutiful daughter looking after her mother, that I talked about earlier? Many of you agreed that she would be frustrated and angry. Would she admit to her angry feelings? What if her mother accused her, “You’re angry with me!” She might agree; on the other hand, she might deny it. Her non-verbal communication would be accurate, however. If her mother’s verbal communication skills have declined, she will unconsciously respond only to the non-verbal message of her daughter’s anger.

So, how do the emotions of two people interact? Happiness in one person triggers happiness in the other, sadness triggers sadness, fear triggers fear, anger triggers anger. Anger can also trigger fear. There are lots of other possibilities, of course. Tears of sadness make us want to reach out and hug the sad person. When a depressed person cries tears of anger, it makes us want to be somewhere else.

Of course, a person’s emotional reactions are based not only on their caregiver’s emotions. Many other factors may also play a role. As caregivers, we want to identify these factors and modify them to increase positive emotions. Why? Because negative emotions such as fear, anger, or panic interfere with verbal communication. In fact, they interfere with thinking, period!

How does fear or anger interfere with thought? How many of you have heard of the “fight or flight” response? Put up your hands. In basic terms, when we become angry or frightened, our bodies make certain physiological adjustments to help us to either run away or to stay and fight. For example, blood flow is redirected away from certain organs, towards the large muscles which will be needed for running or fighting; to the skin to get rid of excess heat produced by all that physical activity, and so on. Where does the blood come from? From the stomach and intestines, because digestion can be put “on hold” while we are busy running or fighting; and also from the brain! Less blood flow to the brain—our IQ’s probably drop by 50 points when we become angry or frightened!

If anger causes so many problems, why did evolution build it in? Well, anger is actually very useful. It gives us energy and courage to overcome obstacles; when we think less, we worry less about all the things that could go wrong, so we are less likely to be paralyzed by fear.

Imagine a mother in the jungle whose baby is taken by a wild animal. If she is unable to become angry, her genes will not survive, because her baby will not survive. A mother who can get angry, will go after that animal and fight to get her child back! Her anger genes will be propagated.

Now, it’s important to understand that anger, like other emotions, is neither good nor bad by itself. It’s what we might do as a result of that anger, our behaviour, what we do and what we say, that gets us into trouble! We cannot directly control our feelings, and we cannot directly control our non-verbal communication of those feelings, which happens instantaneously and unconsciously.

So, what can we do, if we can’t control our feelings, and we can’t stop ourselves from communicating those feelings to others?

The first thing is to become aware of what we are actually feeling. Sounds simple enough, doesn’t it? Well, it isn’t.

Many people have grown up with a very powerful, unshakeable belief that it’s very dangerous to be sad. These beliefs are usually unconscious and occur in people who suffered serious losses in early childhood. This applies to many Holocaust survivors, and often to their children also. For these people, anger may be used as a way to avoid sadness. When this anger is turned against the self, we call it depression.

Professional help from a psychotherapist may make it possible for these individuals to become comfortable enough with their sadness so that they can mourn their losses. Grief and sadness are essential for healing to take place. Clinical depression can also be helped with antidepressant medication.

Other people have learned in their infancy that being angry is extremely dangerous. They cannot permit themselves to experience anger in later life. In reality, it’s impossible to avoid anger. Thus, these people get angry but they’re entirely unaware of it. Their anger does get communicated, however, and it will trigger behaviours which create problems.

Just becoming aware of when they’re angry can be enormously helpful for these people. It gives them some control, in that they can choose to continue to behave angrily or to modify their behaviour.

People who have been forced by early life situations to deny one or more of their feelings, are also cut off from experiencing other emotions, including joy. For them, it will take hard work to become comfortable with anger or sadness. But the rewards are considerable, and well worth the investment of time, effort, and possibly money which will be necessary.

OK, so now you, the caregiver, are at the point of realizing that you may be angry, and that your relative with Alzheimer’s can pick up on your anger and become angry or frightened in response. You will notice that I’m focussing on anger, because this is the emotion which in my experience creates the biggest problems. So what strategies are available for dealing with anger?

Well, there are actually quite a few strategies to choose from. One of the simplest, at least from a theoretical point of view, is to set things up so that we are experiencing positive emotions most of the time. It’s hard to be happy and angry at the same time.

Sure, you say. What have I got to be happy about?

Good question. Well, now we’re talking about attitude. Having a positive attitude, always trying to find the positive in a situation, is key. And that can certainly take up several more conferences and workshops. Invite me back!

But seriously, many people have written or talked about developing a positive attitude. Who remembers the book “The Power of Positive Thinking” by Norman Vincent Peale? Earl Nightingale was a widely-known radio speaker whose words are available in audio-cassette programs from companies like Nightingale-Conant and CareerTrack. Your local library should be able to help you track down this and other worthwhile material.

Another strategy for dealing with anger is to identify those situations which make us angry. Then, when we’re calm, we figure out how to prevent those situations from occurring. Again, a therapist can be helpful here in suggesting different ways of dealing with certain situations. Once we’ve figured out the approach we want to use, we may need to rehearse it in front of a mirror, or in role playing with other family members, to become familiar with it, to make it almost like a habit.
Basically, this strategy calls for practising assertion. Again, assertiveness training courses are available in seminars, in books, and on audio- or video-cassette.

Now, please realize that being assertive is not the same as being aggressive. Nor is it being passive-aggressive. If we have time afterwards, ask me how to tell the difference.

You remember the story of Mrs. A. and her two adult children that I told earlier? What would you say about their emotional states? Would you agree that the son and the daughter are angry? You bet they are, although they have a great deal of difficulty admitting it. After all, they say, Mother is sick, she has Alzheimer’s, she can’t control her behaviour. And besides, she’s lonely, and we’re all she has. She looked after us selflessly when we were little, now it’s our turn.

Why are these children angry? I think it’s because they are being abused. Do they feel they are entitled to be angry? No, they feel their mother cannot help her behaviour. So when they get angry, they immediately feel guilty.

So we have these people who feel they are being abused, which causes anger. The anger then leads to guilt. And what does their guilt do? It causes them to permit more abuse, thus closing the vicious circle of abuse, anger, and guilt.

And of course, Mrs. A. was easily able to pick up on her children’s anger, even though she was unaware of it. And it frightened her; she felt more lonely than ever, and had terrifying thoughts of falling in her apartment, not being able to get help, and dying of pain and thirst, abandoned by her loved ones. Her fears led her to redouble her efforts to have her children nearby at all times.
Naturally, when Mrs. A. felt frightened, it was impossible to reassure her, and so her children felt helpless and trapped, seeking to escape either by moving far away or by becoming ill themselves.
Any suggestions about what can be done?

OK, I felt that if we could tone down the children’s anger, Mrs. A. would feel less frightened and perhaps more amenable to interventions from people other than her children. To tone down the children’s anger, it would be necessary to break the vicious circle of abuse, anger, and guilt leading to further abuse.

There is no single place to break this circle. In fact, it is responsive to interventions at several different points.

First, the guilt. A rational explanation to the children of the roots of their anger and its inevitability and normalcy, given the circumstances, helped to reduce their guilt.

Second, the abuse. Together, we explored ways that the children could set limits on themselves, on their responses to mother’s demands. For example, the son agreed to set a firm schedule for his visits, and to telephone daily at a certain specific time. If she called him at other times, he would calmly and gently remind her that he would be visiting at such-and-such a time, and that he would also call her at his regular time.

The daughter agreed to involve other family members in the daily visits. For example, the grandchildren were drafted to each take one day every two weeks, to make visits after school.
Third, the anger. Because this was at least partially due to the Mrs. A.’s excessive dependence, we looked for ways for Mrs. A. to be more independent. The local grocer had a delivery service, and one of the grandchildren agreed to be present when Mrs. A. telephoned in her weekly order. Another checked to be sure the order was correctly put away.

Mrs. A. agreed to an assessment at a day hospital where she could receive physiotherapy for her arthritis. The son arranged his work schedule so he could accompany her to the evaluation, and then to go with her on the special van the first few times she attended the day hospital program.
So what do you think happened? As we predicted, Mrs. A. reacted with increased fear and agitation to the changes in her life, and she redoubled her efforts to have her children be at her side. But they were highly motivated to follow the program, and eventually things settled down in the new routine.

Of course, that won’t be the end of it. Mrs. A.’s cognitive functions will continue to decline, and her dependency will increase. Sooner or later, the family will have to decide about placing Mrs. A., hiring live-in help, or having her move in with one of them.

I think I have just a couple of minutes left, so I’d like to talk a little bit about the effects on the family of role reversal. When a parent develops Alzheimer’s or other serious illness, and the children begin looking after that person, the parent has become the child, and the child the parent. Of course, becoming a child means giving up a lot of autonomy, giving up control and power. For the younger person, getting this power seems very attractive.

When there have been conflicts between family members, the reversal of power structure may soften these conflicts. The elderly person with declining powers becomes more accessible, less frightening, and easier to forgive. The old battles just don’t mean as much anymore.
However, the elderly person may resist vehemently this loss of control, and seek to retain it through a number of mechanisms. When money is involved, keeping the potential legatees guessing about who will inherit what, can be a very powerful means to keep people in line.
Other people use their dependency and ability to push their children’s guilt buttons as a way of retaining control.

Children, on the other hand, may relish the sense of power they now have, and act in ways to accentuate their control, for example, by infantilizing their parent. Please keep in mind that these kinds of behaviours are rarely conscious, and thus can be very difficult to modify.

An example of this infantilization is the celebration of the elderly person’s birthday or anniversary. Frequently, particularly in nursing homes, staff and relatives bring out a colourfully decorated cake, party hats, noisemakers, and party favours, and sing “Happy Birthday” just as we would for a child!

I believe we can greatly improve the morale and attitude of people by honouring them, by paying tribute to who they are or have been, what they have accomplished. A well-thought-out and convincingly delivered speech of tribute enhances the honouree’s relationships with the audience and boosts self-esteem. Receiving respect is strong motivation for behaviour worthy of respect.

I would like to close with a quotation from the German philosopher and poet, Goethe. After many years of studying the human condition, Goethe concluded, “Treat people as if they were what they ought to be and you help them to become what they are capable of being.”

Thank you very much.

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