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Breaking Through the Barriers of Denial

The Search for Successful Communication, Part 3
By Suzanne Mintz

Do you often feel like a broken record, repeating the same questions over and over again: “When are you going to change your will?” “When do you plan on getting handicapped license plates?” “When are you going to sell that big house and come live with us?”

Getting someone else to do something that seems absolutely critical to you, but that they refuse to even acknowledge as a problem is a situation that arises in all relationships, but it takes on larger proportions, and more significant consequences, in relationships in which one person is disabled, chronically ill, or just incapable of independent living.

“I get so frustrated,” say Kathleen McElroy, caregiver to her husband Scott who has Lou Gehrig’s disease.  “Every time I say that we really ought to talk about our finances, Scott changes the subject.  I don’t want to be a nag, but I’ve got to get him to realize that we have to make plans for my future, and for the kids’ future too.  I’m afraid he’ll hate me if I act on my own, but I can’t just wait around until he’s ready.  I need to do something.  I feel so trapped by his inaction and manipulated by it as well.”

Denial Isn’t Necessarily Bad
This is a common caregiver complaint says Linda Samuel, a clinical social worker who for the past twelve years has provided services to families through the National Multiple Sclerosis Society.  “It’s a very difficult situation,” she adds, “because both parties are in pain.  One tries to cover it with denial and the other wants to work through it and gain some control of his or her life.  They are in different places, almost a different time zone in a sense, and so they can’t hear what the other one is saying.” 

Denial in and of itself isn’t a bad thing, Samuel is quick to add.  In fact, it’s a normal response to pain.  It only becomes a problem if people don’t work through it, move on, and start picking up the pieces of their lives.

“Denial gives people time to adapt to crises and significant changes in their lives,” according to Katia Lathrop, Care Manager at the Gerontology Center of Suburban Hospital in Bethesda, Maryland.  “It gives them time to overcome their fear.”

Recognizing that denial is a normal coping mechanism probably won’t blunt your frustration with your loved one’s inaction.  However, realizing that as individuals, we all cope with pain and loss differently, and at different speeds, can help you understand that you need to find a way to break through the denial so that constructive communication can occur.

Showing You Understand
Finding the way may well start with gaining a better appreciation of how the change in your loved one’s life has affected his/her ability to deal with long-term issues or think about the concerns of others.

One of the byproducts of being disabled by an illness or having an accident, etc. is the feeling of “having been done to.”  It makes people feel very vulnerable and takes away their sense of empowerment says social worker Samuel.

“It’s hard for people to recognize that despite the initial occurrence they still have choices, many of them, and many decisions to make, too.  They have to decide how they want to live the rest of their lives.  Trying to convince them of that is a key element in breaking through the barriers they’ve erected.”

Often people who are receiving help from others, or who have experienced a great loss, think that others, even their closest relatives and friends, can’t possibly understand their situation.  They become distrustful of any advice that is given, according to Suburban Hospital’s Katia Lathrop.

It’s important therefore for caregivers to verbalize the fears their loved one may be feeling, to show they empathize with the situation, that they understand their loved one has suffered a great loss and may be frightened about the future.  Linda Samuel agrees and offers the following introduction to a conversation as an example:

“Mary, I know you wish things hadn’t happened this way.  I know you wish you hadn’t been in that car accident.  I know you are frightened.  I am too.  I wish you were still fine and healthy, but the fact is you’re not, and we have to start finding out what our choices are.  We have to start making decisions, so we can move on from here and live the rest of our lives as fully as possible.”

Convincing your loved one that he/she still does have some control over circumstances is an important part of the communication process.  Words like choice, options, possibilities, and alternatives are important words to use because they are action-oriented.

Be Clear  About Your Own Feelings and Objectives
As important as it is to empathize with your loved one, it is equally important, if not more so, to under­ stand your own feelings. Alice Hammond, a psychologist with a PhD and 14 years of clinical experi­ ence to her credit, much of it with families in difficult situations,  says: "Be clear about your own emotional goals.   Know what it is you're feeling and what you really want to achieve."

I spoke to a number  of different caregivers before writing this article, and when I asked them what were the concerns  that  propelled them to insist over and over again that  their loved one take a particular  action, the answers seemed to fall in one of three categories: a concern for the loved one's physical safety or mental well-being, a concern for some sort of security, or a strong desire not to have to make critical decisions alone.

"I'm afraid she might go into a coma," said Bill Richardson, referring to his wife Sylvia. "If she doesn't have a living will, what am I going to do?   I don’t want to have to decide
how much or how little  treatment she should receive. I want to know what she would want me to do."
"Christine and I are in our sixties now," noted Marty Mateo. "We've cared for Julia all her life, but when we are gone, she'll need to live else­ where, have another guardian.  Christine refuses to deal with the issue, and I'm afraid we'll die before it's been resolved. What will happen to Julia then?"

"My father is the original macho man," explained Nancy Chason. "Despite the fact that  he is 75 years old and recently had a heart  attack, he insists that  he's in perfect health. I only want him to wear a personal response buzzer, just in case some­ thing happens again. I'm concerned that he'll have another attack and it will be too late when someone finds him."

Look closely at your own feelings and try to verbalize what’s causing you to harp on a particular issue.  Try to separate out the solutions to the problem form the issue itself, counsels psychologist Hammond.  “It’s the underlying concern that is more likely to get them to respond to your request rather than your insistence on a particular action.”

By expressing things in terms of what you need – less anxiety about your child’s safety, the security of knowing that your spouse’s illness won’t eat up all of your resources, etc. – you are more likely to get a positive response to your request.  “People tend to respond more easily to an emotional plea than they do to logic,” suggests Dr. Hammond.  By appealing to their concern for you, you are also helping your loved one move outside of themselves, Linda Samuel adds, because you are urging them to think about the impact of their inaction on other family members.

When You Can't Break Through
According  to all the professionals we spoke with, if you don't  get any­ where, despite your best efforts to break through  the barriers your loved one has set up, and you've reached your own limit in terms of living with the consequences of inaction, then  you are best advised to do what you can to change the situation by yourself.

The word ultimatum often has negative connotations they noted. It suggests setting up a situation in which one person wins and the other loses.  But an ultimatum need not be confrontational, especially when it is presented  in terms of your own needs.

"I am so afraid every time you get behind the wheel of the car. You've been so distracted lately and you just don't seem to have the concentration you used to. I am concerned you are going to hurt yourself, and others. I may not be able to stop you from driving, but I don’t have to get in the car with you either. From now on, I'll take my own car instead of going with you."

"Obviously the preferred solution is for your loved one to work with you to find answers to the difficult problems you face," says Dr. Hammond, "but if that doesn't seem possible, don’t be afraid to do what you can by yourself."

In fact your own action might just trigger the reaction you want, she adds, because nobody wants to be left out of important decisions, particularly an adult.

If circumstances are such that you must continually act on your own, and if you are consistent in your behavior, sooner or later, Dr. Hammond contends "...your loved one is going to want to be part of the act to regain some self-determination."

Let your loved one know how you feel and what you think needs to be done, the therapists we spoke with advise. Present your first solution ­ one that includes active participation by both of you. Let your loved one know you want him/her to help solve your mutual problems.

Be prepared to offer alternatives when possible. Note which of your suggestions include your loved one and which do not.  But also let him/her know you are going to do something on your own if you have to - that the current situation is untenable for you.

What's To Be Gained
Acting on your own isn't a turning away from your current  relationship or a disavowal of the other  person's rights. It's rather  an affirmation  of yourself as an individual  and your commitment to carrying on with life. By doing something you regain your own sense of empowerment and control over circumstances ­ and that's an important thing to do for your own health and well-being. This is perhaps the primary thing to be gained by moving beyond the status quo, but there are others as well. They include: chipping away at barriers to meeting your goals, feeling less anxious because you know something has been done, and learning new skills. In addition there is always the possibility that new options may open up because you have taken steps toward changing the situation that upset you in the first place.

Acting on your own to solve a problem that affects you and other family members isn't necessarily what you want to do, but when you are dealing with illness or disability, not all of the solutions to problems are going to be ideal. The goal is to make the best of a difficult situation.

By working toward breaking through the barriers of denial, that's exactly what you'll be doing. It requires fortitude, empathy, concentration, self-awareness, and a whole lot more. If you manage to do it, even temporarily, you will have accomplished a great deal. "I didn't realize what a rebirth I would feel," says Jason Strandquist, whose wife Joan has rheumatoid arthritis. "Now that Joan is willing to work with me on finding solutions to the problems we face, life is a whole lot easier. It's a great relief to be able to turn off my broken record."

This article first appeared in Take Care! Volume 2, Number 1 Winter 1993 published by the National Family Caregivers Association, now known as Caregiver Action Network.