Where to Draw the Line_How to Set Healthy Boundaries Every Day

by Anne Katherine

But eventually many of these friends would burn out—having given too much—and would go away. When she would hesitate in making a decision, carefully weighing her capacity for an activity, they would sometimes view it as a manipulation. Because she would seem normal much of the time—the result of her careful and methodical management of her personal energy—some of her friends came to believe that she could overcome her disability with the right attitude, if only she’d try.

  THE GREAT DIVIDE

  We in the United States live at a pace that constantly demands optimum performance of our bodies (and our tools, our employees, our cars, computers, children, and mates). We get impatient when our cell phones don’t connect to a tower immediately. We drum our fingers if the computer needs an extra second to think.

  We have no space for illness, fatigue, or aging. Many of us treat our bodies like machines, demanding endless resilience of ever-diminishing resources. No wonder the incidence of chronic and autoimmune diseases is rising at an alarming rate.

  When people become ill, they cross the great divide to the ranks of the infirm. Meanwhile, the healthy people rush on. There’s a way healthy people separate themselves from those with illness.

  Partly this is just the nature of living. While we are alive, we want all the involvement that living can provide. But I wonder if something else—a denial or fear of the prospect of illness—enhances the separation.

  Usually people with autoimmune and chronic diseases want very much to participate in whatever life they can manage. Most don’t want to be seen as separate or different, and many find it difficult to ask for the concessions that would make participation easier for them. If everyone is standing, it can be hard to ask for a chair.

  Janet loved attending her prayer group, but sometimes a member’s house would be so far away that she couldn’t muster the energy to drive there. She missed meetings now and then because of this. She wanted so much not to be seen as different, but one day, as hard as it was, she forced herself to say that she wanted to go but didn’t think she could manage the drive.

  Because she did marshal the courage to speak, the entire prayer group suddenly caught on to her dilemma. They had a wonderful conversation in which Janet shared her enjoyment of the group and the difficulty she faced when she didn’t have the energy to drive herself to meetings. She even talked about how hard it was to have needs that were different from everyone else’s.

  Understanding opened up, and the group volunteered to take turns picking her up so that she could always go, no matter where the meeting was held. She felt included, wanted, and warmly supported. Over time, the group realized that the care and patience that Janet’s illness had taught her often held wisdom for them.

  We have each gained wisdom by walking our unique path. Everyone has something to offer. By shunning the chronically ill, we deprive ourselves of perspectives that can slow us down and inform us.

  THE DILEMMA OF THE BEDRIDDEN

  The minute her grandkids came through the door, Elsie bombarded them with a long list of things she needed them to do. “Mona, take my nighties to be washed. I’m out of powder. Bring me some books next time. Change the channel on the TV, Ted. Move my phone—the maid put it out of reach.”

  Ted and Mona sometimes felt invisible to her, as if they were mere servants, not her treasured offspring. They felt unimportant and, as a result, didn’t visit Elsie very often.

  A bedridden person is completely dependent on the legs and arms of anyone who comes through the door. As a result, they can easily get in the habit of greeting relatives with a list of their needs, out of fear that if they don’t, they’ll end up lying there waiting for another day, week, or month before someone can respond to them.

  If you are healthy, appreciate that a bedridden person must always wait to have any needs met. This is very hard. If they can write, encourage them to keep a running list of things they need. If they are alert, get them a little tape recorder and teach them how to record their needs as they come up.

  Whenever you visit them, let them know right away how long you’ll be there. If they know they’ll have plenty of time with you, they won’t feel they have to get all their requests out in the first five minutes. It can also help if, when you first arrive, you reassure them that you’ll pay attention to their list.

  Make physical contact to help them come out of their awful isolation. Hold their hands, brush their hair, touch their arm (unless, of course, any of this is painful). Touch will help them relax and be more present.

  BOUNDARIES WITH PEOPLE WHO ARE BEDRIDDEN

  • If you see a way a kindness can benefit them, offer it.

  • When you first arrive, always say how long you’ll be there. Stick to this commitment.

  • Keep the promises you make. If you say you’ll visit again in two weeks, do so.

  • Offer to listen to their experiences. Being understood can give them energy and fortify them for the next week of living. Let them talk about what they go through, how they view the staff, who their favorite caregiver is, and so on.

  • Take care to give only what you can afford to give. Be careful not to extend yourself so far that you’ll resent it.

  • Observe your own (often automatic) judgments and criticisms of the person. Try to spot any unfair or automatic assumptions. Do your best not to act on assumptions, but to respond to the living, breathing, unique person before you.

  KEEPING GOOD BOUNDARIES IF YOU HAVE A CHRONIC ILLNESS

  • Greet your visitors before getting into a discussion about what they can provide and how they can help you.

  • When a visitor first arrives, ask them how long they plan to stay so that you can pace yourself for their visit.

  • Ask directly for what you need or want. Remember, you are the world’s leading expert on your situation. You may have to explain exactly what you need to people unfamiliar with your illness.

  • Express your appreciation for what people offer you. If someone gives you time, a treat, or help, this is a gift. Thank them.

  • Remember, anyone who serves you does so out of choice. You are not entitled to their help. You are fortunate that others will give you the help you need.

  • Do not manipulate others to get what you need. People pick up the energy of manipulation, and then begin setting up defenses against you.

  • Keep a running list of the things you need on a piece of paper or cassette tape.

  • It will expand your world to find out about the lives and activities of your visitors. Ask them what they are involved in and what matters to them.

  CHRONIC EMOTIONAL DISORDERS

  Before Kevin married Marra, she explained that she had suffered for most of her life from severe mood swings that were finally diagnosed as bipolar disorder and were now successfully treated by medication.

  A few years after their wedding, Marra had to stop taking her medication for a few months due to surgery. Kevin was suddenly faced with a woman who was like a stranger to him.

  On her way up into her manic phase, she’d get as self-absorbed as a teenager. She’d take the car to get serviced and not pay any attention to what had been done. She’d wash half the dishes and leave the rest. Then, as she’d slide down into depression, she’d say mean things to Kevin. She’d be hostile and cutting.

  Finally she was able to get back on medication, and he found again the woman he had married. But he was reserved and still hurting from the things she had said in her wild volatile state. He tried to talk about it, but she couldn’t remember how she had been or the hurtful things she had done, so she couldn’t really acknowledge or appreciate what he had been through.

  Eventually he put it behind him and they settled into a comfortable marital relationship.

  Then, on a holiday, for no special reason, she was suddenly spiteful to him. He found himself pulled into absurd arguments that went in circles. Then he realized Marra had run out of pills and hadn’t bothered to refill the prescription.

  These ups and d
owns continued for years. Kevin finally learned that the minute she went off the medication, he had to set boundaries. Only when she ran into consequences—consequences only he could establish—would she get herself back on medication.

  After such episodes, she continued to have amnesia about her erratic behavior. Thus she had no idea that when she changed, his whole manner of operating also had to change. She literally did not know of the adjustments he made when she was not well.

  Once, soon after she’d recovered from a relapse, he asked, “Did you feed the dog?”

  She was offended. “Of course I did. Do you think I’m not a responsible person?”

  He felt stymied. She didn’t know that during her relapse, she wasn’t a responsible person. It was lonely for him not to be able to talk to her about it.

  When someone suffers from an emotional disorder that affects their thinking, behavior, attitude, or mood, sometimes the only thing that will save the situation—other than effective treatment—is boundaries.

  Some people resist continuing with medication that lifts them into joy and life. Over and over again, I’ve watched certain clients fight medication, even though they are tortured mentally when they aren’t using it.

  If you are close to someone who needs medication but is resistant to staying on it, you can set a boundary of not having contact with them when they are not in a healthy mental state.

  This is done not to control the other person, but so you can determine the kind of experiences you allow into your life. You have the right to limit contacts that are hostile, abusive, or crazymaking.

  Kevin found that setting boundaries was the one and only thing that would penetrate Marra’s out-of-kilter states and jar her into realizing she needed to be taking her medication. Before he caught on to setting boundaries, he had turned himself inside out trying to talk to her, cajole her, encourage her, manipulate her, and monitor her into taking her pills. None of these worked. In fact, they all only fed her disease and increased her manipulation. Only when he stepped back and took care of himself did she come forward with a healthy response.

  In my own practice, I’ve learned that when a client has a disorder that causes them to be manipulative, I do them a disservice when I allow their manipulations to work. Accepting manipulation only feeds the disease. In contrast, holding firm boundaries feeds and encourages the healthy person buried under the disorder.

  And what if you have a disorder that causes you to lose your memory or mistreat someone you care about?

  Don’t hide behind your disorder or use it as an excuse. “Well, I only did it because I wasn’t in my right mind.” Remember that the other person still suffered, whether you meant them to or not, whether you could help it or not. They still were hurt because of how you acted.

  Take responsibility for your behavior. Make amends for the hurt. Appreciate the gift the person gives you in choosing to hang in there and stay committed to the relationship.

  Don’t expect them to quickly and automatically become trusting again after you’ve recovered from a relapse. They can’t simply push a button and feel safe again. Even if you can’t remember what you’ve done, understand that it will take them awhile to learn that you are paying attention and being responsible again.

  Sometimes, the best gift you can give the other person is simply to listen as they talk about their difficult experience. As you take responsibility for your own treatment and do what you can to be as healthy as possible, you will have a greater capacity to hear the other person’s side without feeling a loss of self-esteem.

  SETTING LIMITS

  Most people will respond to consequences. By setting firm boundaries around the actions you will not accept, you can influence the course of your relationship with almost anyone.

  Siobhan’s mother had been self-absorbed all Siobhan’s life. Now, eighty-six years old and afflicted with Alzheimer’s, she was meaner than ever. Siobhan would pick her up every Monday and take her on an outing and to lunch. She would endure a continuous litany of complaints and criticisms and then take her mother back home.

  She paid a terrible price for allowing herself to be abused. She felt bad about herself; she was bottled up with anger and grief; she hated Mondays; and she stuffed herself with sweets every Monday evening to help numb the pain.

  Through counseling, however, Siobhan slowly learned to set boundaries with her mother. One Monday, as they drove toward the restaurant, her mother started in on her. Siobhan stopped her and said, “Mom, if you are going to continue criticizing me, lunch is out. I’ll take you home.” To her surprise and delight, her mother suddenly stopped her torrent of criticism.

  They had a pleasant lunch together. Then at the grocery store an hour later, her mother made a cutting remark. Siobhan took her mother by the arm, left the basket, and led her from the store.

  “What are you doing?” her mother cried.

  Siobhan said, “I’m taking you home.”

  “Why?”

  “You were rude to me.”

  “I didn’t mean it.”

  “I’m still taking you home.”

  “I want to get some oranges.”

  “I’m taking you home.”

  By setting a firm limit and not accepting any excuses, Siobhan gained power over her emotional space. And her mother, despite her Alzheimer’s, learned to stop criticizing her. Since any activity was immediately aborted the minute she became critical, she quickly stopped being critical.

  (Can everyone with Alzheimer’s learn or is this case special? As the brain deteriorates, one’s ability to learn, process, and remember decreases. Still, I’ve been amazed at how people with all sorts of physical or emotional conditions will repeat a behavior that is rewarded and stop a behavior that costs them something they want.)

  Never accept abuse. The cost is too high and the other person is never benefited.

  Chapter 23

  WHEN SOMEONE IS DYING

  Even though we all know we’ll be exiting this world, everything changes when we are given a rough idea of our time of departure. Our entire focus shifts, and we begin to see both life and death differently.

  Each person approaches death uniquely. Most of us go through the stages of grief—denial, sadness, anger, depression, and acceptance—but we vary in the amount of time spent in each stage, and some people repeat the cycle at ever deepening levels.

  In addition, dying people often face physical challenges. They may feel sick or in pain or be medicated. They could be dealing with loss of mobility, energy, or options. They may be faced with giving up their home, activities, work, or lifestyle.

  Let the dying person set their own limits for how often and how openly the two of you discuss their death. But do make it clear that you’re available for such a discussion.

  “Gram, do you want to talk about this at all? I want to be here for you any way you need me.”

  “Aunt Jessie, if you have thoughts about dying or leaving home, I’ll listen. I care about you. You sure have been through a lot of changes.”

  If you need to convey your own feelings about the person’s illness and death, let them pick the time. For example: “Carrie, could we have a little talk, sometime when you feel like it?”

  Don’t keep bringing up their death in casual conversation, however. When someone is dying, they usually try to get in as much living as they can. If they’re drinking in the beauty of a rose, don’t mention that it’s probably their last summer. This is like drenching them in ice water. A tactless comment can interrupt their deep and rich living—and take them out of fully experiencing the moment.

  Sarah was traversing her last fall. She loved the brilliant leaves of the maple tree outside her bedroom window. She noticed, though, that it seemed to be losing its leaves too quickly. One afternoon she saw her sister shaking the tree.

  “What are you doing?” Sarah called in horror.

  Maggie answered, “I’m raking leaves. I’m trying to get the leaves out of this tree so I can be
done.”

  If you live with a dying person, don’t be in a hurry to close off the seasons. Don’t rush to put away holiday touches. Who cares if the Christmas tree stays up a few weeks longer? If your loved one is gaining pleasure from the beauty of a decoration, don’t be confined by arbitrary time limits.

  Be careful about making statements such as “You look great” or “You don’t look sick at all.” While someone concerned about their appearance can be reassured by such a comment, a different person might be insulted, as if you think appearance really matters, even though much more important things are happening. Yet another person might feel you are doubting their diagnosis or invalidating their dying process.

  Be mindful about reporting the latest remedies you’ve heard about. We do this because we want to be sure a loved one has every opportunity for recovery. But by now the dying person is probably an expert on their disease. They probably know much more about it than you do, and they’ve likely been considering their options extensively. If they are finished weighing pros and cons and have already made the difficult decision about how aggressively to fight their condition, new information can be upsetting. If they are at peace with a decision, your well-meaning enthusiasm for a treatment you read about in a weekly magazine can be stressful. They may feel obligated to look into it when, in fact, they’ve already moved past the decision-making stage and are focused on something else. This could take them backward instead of forward.

  Sometimes a death sentence can be a relief to someone who has had a hard life. It’s permission to let go and quit trying. No matter how much we love that person, those of us on the outside must let them make the choice to die. We each have sovereignty over this basic issue. Lecturing someone on the ways they might fight to live can be a burden.

  Some people do fight to live, of course. They want to know of every remedy, every research article, every smidgeon of information about their disease. That person will probably welcome what you’ve found. The simplest way to do the right thing is to ask. For example, “Do you want to know about the remedies that have helped other people with this problem?”