"Why Caretaking Turns Toxic" - Caring for the Caregivers, Part 3.

Welcome back to part three of our series on Caring for the Caregivers. In our first two blogs, we discussed how those who provide care can add to their stress levels based on an irrational belief system. This included a look at how accumulated life experiences form the basis for how we interpret those things that occur around us and react or respond based on those systems of beliefs. And, we discussed the importance of accepting reality and once we learn to do this, we can begin the process of diminishing self-induced stress and adopting a more realistic view of life.

Now, to be fair, this is not to minimize the stress of taking care of a loved one because it is tremendously stressful, perhaps one of the most emotional and stress inducing situations in life. However, the point of these blogs is to learn why some people are more susceptible to stress than others and discuss some behaviors that may help you eliminate some self-induced stress while adopting some skills to proactively take care of yourself.

This week, we are going to look at the family system and how those things we learn become major contributors or major protectors from the stress of providing care. What occurs in the family system sets the tone for all future interactions with family members, friends, the environment and ultimately, your own thought processes. Let's begin.

In all families, roles are formed at an early age to help the unit negotiate everyday issues that may affect each individual within the group or the unit itself. For the most part, this is a normal part of learning to negotiate the real world, coming to understand that people, families and even the individual live in an imperfect world and make less than appropriate choices from time to time. People get sick and they may die. Cars break down and money may not be available to buy a new one. Some members of the family unit may need to sacrifice for the benefit of another member. It's about acceptance, give and take. That's the reality of life and most families find equilibrium at some point in a crisis and re-group to live and love another day.

But what about a family that lacks appropriate role models, or one which never seems to find equilibrium because one of the members is chronically ill? A sick family member means that behaviors begin to form to protect no only that individual but also the welfare of the family unit. Although the person who is sick may get better, the roles that other family members take on to deal with the family crisis continues in the absence of a problem. In other words, they continue to deal with everyday problems as if the sickness is still present. Addressing everyday life issues from the perspective of these acquired and oft times dysfunctional roles result in irrational responses to problems and a skewed view of the world.

If these roles are not addressed and changes made, they tend to play themselves out right into adulthood and if someone is thrust into a caretaker role for a chronically ill or elderly loved one, the behaviors re-emerge to the detriment of all concerned. It's important to recognize these roles and understand how being "typecast" never ends well. Let's look at these roles.

The Family Hero

When I use this term, it is not being done in a way to mock or diminish the caretaker. In fact, they are the family hero, undertaking the heroic action of caring for an ill loved one. But how far does the heroic behavior go before it becomes pathological? For instance, is the person in the caretaker role doing it because they want to or because they believe it is expected of them? If it is the latter, it doesn't bode well for that individual's long term physical and mental health.

In many families, the hero role is usually left to the oldest child, usually a daughter, or a spouse who is alone. This person takes on the role of being responsible but also tends to overachieve, to their own detriment, especially if they lack appropriate communication skills or are unable to ask for the necessary supports they need.

The hero handles all the medical appointments, legal issues and other chores needed to keep the sick parent safe. Their role allows others in the family to look to him or her as a source of "pride or the rock", as they are doing all the right things for the sick parent. Although other siblings hide behind the hero, there may also develop a deep resentment among them for the attention they garner and they can’t wait to find a fault in the hero that they can exploit.

The compulsive drive of the hero is not without problems as this activity often results in stress related illnesses and overwhelming frustration. Others outside the family may comment on his or her “wonderful character”, which keeps them overachieving in order to live up to the unrealistic expectations of others. After all, they must keep the facade of invincibility that feeds their irrational thought processes regarding how others see them.

In some extreme cases, the hero becomes an apex of morality. Much like a priest, they are expected to take “vows of celibacy” by other family members or friends to the person they are caring for, renouncing the world in service to that person. As this role develops, it further solidifies how others view the hero and any deviation outside of selfless devotion to the “cause” creates gossip that adds to any resentment that does exist, turning into a “see I told you so” moment among those who subconsciously want the hero to fail.

In the end, the hero often feels isolated, adrift in a world of false pretense, unable or afraid to experience intimate relationships and out of touch with who they really are. Other family members will judge them based on the smallest mistake they may make in order to cover for their own feelings of guilt and inadequacy. Friends, who claimed to admire them, will also become judgmental when they see the hero try to step outside of the caretaker role, ruining what semblance of support the hero thought they had from others.

When all is said and done, the hero loses their own identity and lives for the acceptance of others and not for who they are.

The “Conductor”

This family member is a master manipulator. They enable the hero in maintaining his or her behavior by constantly paying tribute to their “selfless giving”, but behind the scenes, they are really manipulating the hero to do the work they do not want to do – and if the “hero” makes a mistake, watch out!

The conductor orchestrates the roles that other family members play and may even search out a “villain” of the family, someone they can point and wag their finger at. In reality, the conductor is manipulating everyone in the family to cover their own guilt about not being able to or not wanting to help take care of the sick parent.

In some cases, the conductor may also take the lead in launching attacks on the family hero. These attacks give them an excuse not to be present to help because the hero is, in their words, "trying to control everything". Although this person appears to be the one providing nurturance to others in family, in reality, it is a self serving behavior that is dysfunctional at best and devious at worst.

The Villain

This may be the sibling who is exceptionally guilty about the situation and acts this out through a number of unacceptable behaviors, including drinking or anger towards others in the family. This behavior, however, may be the result of the conductor’s attention and faux admiration focused on the hero. The villain often has the most negative things to say about the hero, becoming the face of the resentment felt by other family members and a convenient scapegoat for the conductor. The villain usually lacks any deep relationships with others in the family and those who are a part of their inner circle experiences a person who is shallow and inauthentic. For the villain, this is not a new behavior and usually something learned early in life.

The Ghost

This is the sibling who is quiet, withdrawn and invisible. They often feel like outsiders within their own family. They retreat from the family chaos, often have poor communication skills, and remain aloof from the situation that is present. This sibling may be unreachable by phone or may have moved thousands of miles away. The ghost usually has few support systems and tends to indulge in extreme activities as a way of self nurturance. Often, they will become obsessively focused on activities like working out or taking care of animals and may be overly involved in material possessions as a way to compensate for their lack of appropriate social relationships.

The Cool One

This is the sibling who is the “life of the party." He or she becomes the center of attention in order to divert others from being focused on the problems within the family. One can never discuss problems with the “cool one” as they change the subject constantly by making jokes or engaging in lighthearted banter. This sibling often has intense inward anxiety and fear and uses humor as a defense against those feelings.

The anxiety of the “cool one” is often too much for them to bear and they may use alcohol to keep their emotions at bay. To outsiders, they seem to never be bothered by anything and may even be admired for the way “they handle things”. For immediate family members, they become the focus of resentment because they never “take anything serious”. They are also exploited by the conductor who can move this sibling between the role of "villain" and being "the cool one." In reality, this person is being consumed internally by their overwhelming anxiety and sadness so they try so desperately to hide those feelings from others.

What about a family with an only child? In a situation where an only child or a spouse provides the care, he or she may take on parts of or all of these roles, moving back and forth between them, sometimes playing all of them at the same time. This person tends to experience tremendous stress, emotional pain and confusion. Without a healthy outlet or support system, they will crash and burn.

So are these roles a sign of an unhealthy family or person? Yes...and no.

In a healthy family, members do take on roles but not in such a rigid way. Instead of pressing each member to embody a role to fulfill only one family function, each member is given the opportunity to experience each of the family roles. As a result, they incorporate positive adult and parental modes of functioning. They are able to maintain themselves, their identity and their own families. They are able to give and receive nurturing. They are able to establish a network of intimate and friendly relationships in which they can experience love and belonging.

They tend to respond to family issues and not react, and because they had an opportunity at a young age to experience multiple roles, they can move between them in a healthy and appropriate way as needed, always maintaining their own identity. Although they may experience stress when acting as a caretaker, they know where to look for help and how to get their needs met.

We have reviewed these roles and we see that each one has a purpose in protecting the family, its members and themselves. But there is one more role that is so dysfunctional, it leaves the person alone and isolated. It is a learned behavior that can be passed down from one generation to another. It is an emotional and behavioral condition that affects an individual’s ability to have healthy, mutually satisfying relationships -- not only with others, but with themselves as well. These people must be in control at all times and can become abusive when they realize control is beyond their reach. In the world of addiction, it is known as codependency. In this discussion of caregiving, we will call this person the Magnanimous Martyr.

The “Magnanimous Martyr”

Best described, it is “the need to be needed”, someone who will give till it hurts -- no matter who it hurts. For these people, caregiving is not a profession, it's their identity. They take jobs early in life where caregiving is the central theme. They are always the one offering up advice to friends even if it's not solicited and get angry if that advice is not heeded. If a family member becomes ill, they jump in with both arms and both legs.

For this person, there exists an ingrained pattern of irrational thought and emotions that lead to negative consequences. But for the martyr, the outcomes are “perceived” as positive ones, but only if they had a hand in the matter.

The Magnanimous Martyr's behavior is the result of a dysfunctional learning process through experiencing events that may have been present during childhood or living in an environment where there are adult expectations of children on a daily basis. They want to control everything because, and as we said before, in control there is safety. But because control is an illusion, they never feel safe, so every thought and action is aimed at controlling those around them, the environment and the outcomes - a goal that will never be realized.

Martyrs tend to grow up in homes where dysfunction is the rule rather than the exception, where the result is patterns of behavior that lead to poor outcomes in everything from relationships to vocational performance. At the root of this problem is the inability to communicate their needs or trust in what they see occurring around them, always assigning some devious motive to situations.

If you ever work with a martyr, it is an experience you will not soon forget. They seek perfection in everyone and if you do not meet those standards, you are no good -- there are no gray areas with them. Martyrs can appear to be tremendously structured and follow rules very well, and have no problem pointing out someone who doesn't. The martyr can create enormous chaos in the workplace and sit at their desk above the fray while the fires they cause burn around them. And if things are rolling along fine, they will find a crisis so they can jump in and make the save.

These behaviors are learned and the beliefs they possess cause a distorted sense of reality. Since the family is the classroom for all of us, the irrational beliefs learned do not give them the tools to deal with the outside world, hence the need to control and the comfort in chaos. Their distorted perceptions lead to unrealistic expectations of others throughout their lives resulting in constant anxiety, emotional upset, goal blocking and personal stagnation.

As children, they never knew where they fit and as adults they develop a false persona that must be maintained at all costs. They live for others and not themselves. Genuine feelings are hidden, a negative attitude towards self develops and they become angry adults who are envious, critical, blaming and perfectionists.

Often, these adults know only “conditional love” resulting in a lifetime of unhappiness. Others are only rewarded if they confirm the Magnanimous Martyr's inner values of right and wrong -- there is no wiggle room. These people often turn to the caregiver role in order to "help others" but in reality, they are helping only themselves.

Think about it, if they are in control of the ill person, they are able to dictate what time appointments are, when medications are to be taken, what foods are eaten, etc. They may come across as the most caring, wonderful and sacrificing person but it may all be self-serving. These people are afraid to have fun because if they let down their guard, if only briefly, they fear being violated or taken advantage of. Although this personality is the exception and not the rule, it is not something that family members need to be aware of.

So just how do these roles play out in the real world? Here’s a real-life story about a woman named Amanda.

Amanda was the youngest of four children. She had two older brothers, Wayne and Steve, and an older sister, Kim, born just before she was. Her father was a good provider but a functional alcoholic. Her mom was a stay at home mother who coped with raising four kids, taking care of a house and putting up with the abuse of her husband through being quiet and submissive and also years of using Valium.

As her siblings aged, they all managed to escape the home with Amanda being the last one home, leaving her to become a surrogate wife to her father, washing dishes and clothes and cooking meals, as her mother became increasingly dependent on her Valium. Upon meeting her first boyfriend, she got pregnant, married and left the house. She was just 18 years old.

Amanda had two other children and moved with her husband into an apartment in South Providence. After the birth of the third child, Amanda’s husband left her. Shortly after this happened, her father was diagnosed with cirrhosis of the liver and died within three months. Her mother asked her to move back into the home with her. As the kids got older and went to school, Amanda took a job with a local daycare and then went back to school to become a CNA, taking a job at a local nursing facility.

Amanda kept this job for years and as her kids graduated grade school then high school, she began to look forward to having some time for herself. Then, her mother was diagnosed with Alzheimer’s disease. Amanda kept her job at the nursing home, took care of her mother and helped take care of her first grandchild.

Eventually, her mom needed more supervision and when she reached out to her sister Kim, she was told to “quit her job” and remortgage the house to take care of mom. Amanda did this and became her mother’s full-time caretaker, leaving her position at the nursing home. Kim sang the praises of Amanda to all concerned, including other family and friends. It didn't take long for Amanda to begin to feel the pressure of being a full time caretaker for a mother with dementia.

"At my job, I was there eight hours a day, got breaks and vacation time, and even had support groups we could go to. Now that I'm home, this is 24/7 with no help. It's crazy," she lamented.

Her brothers had their own issues. Wayne was an alcoholic who was in and out of treatment and Steve moved to Philadelphia where he worked as a bus driver for that city’s transportation system. She knew they would be no help to her. But she hated reaching out to Kim because"it would be admitting that I was weak or something," Amanda said.

“But I ended up calling her, and every time it was the same thing, she would tell me what a great job I was doing, shutting me down from telling her what I was feeling. She would over-talk me and if I did get a chance to express that I was feeling stressed out, she would minimize this and tell me things will get better, and quickly get off the phone,” said Amanda.

“If I said anything about calling my brothers, Kim would bad mouth them, especially Wayne, saying he was a ‘chip of the old block’ comparing him to Dad because of his drinking. To Kim, there was nothing good about Wayne so I just stopped discussing him.”

Then Amanda called Steve, asking if he had any vacation time that he could take and come back to Rhode Island and give her a break. “He told me he couldn’t do that, instead making light of things and joking about the situation. He never took what was happening to mom seriously nor did he acknowledge what I was feeling. When it came to my kids, I was adamant not to ask them for help or put them into the situation I was in as a kid, so I just felt stuck, actually it was more than feeling stuck. I was getting sick."

What she didn’t know was that she had begun the process of sinking into a serious depressive episode. After years of raising kids, CNA work and taking care of her mother, Amanda’s view of life and of herself was changing.

“I started making excuses to get out of the house, asking neighbors to check on mom while I was gone. What should have been quick trip to a store took hours. I loved being away, walking around, no stress, not being followed around or changing diapers. When I did get home, I would be angry and have no patience for my mother. Then the rumors started,” Amanda tearfully stated.

The rumors were the result of her leaving the house for extended periods of time. And of course, the neighbors who would step in to help called her sister Kim and let her know of their concerns. Kim was told that Amanda didn't "seem to care anymore" and "didn't care who she left her mother with."

“Those words really hurt me. I was there all day, every day. Then I would get called by Kim, who made accusations about me and yet, she never, ever, ever offered to help me! So I stopped going out for fear of being accused of neglect or of harming my mother.”

“I then asked Kim about getting a part time home health aide and she screamed at me, telling me that I didn’t care about mom, that I would just let anybody take care of her and on and on, it felt like I had nowhere to turn,” Amanda said.

Eventually, she ended up at the Emergency Room at Rhode Island Hospital with a panic attack. She was treated and sent home -- with a prescription for Ativan, which led to more gossip about drug use as neighbors told the sister that Amanda looked "drugged out."

"Mom got sicker and had to be hospitalized," Amanda stated. "She was placed in nursing care and now I'm home alone. But I don't feel any better. Even though I took care of her for years with no help, I feel guilty and like I didn't do enough."

"My sister is saying that I took care of mom just to have a place to live and of course, the drug addict talk hasn't gone away. I often wonder what it would feel like to wake up one day and feel like I did something good, like I don't owe anyone anything. I wish my sister would just thank me for taking care of mom. Instead, I just sit around and wonder what more I could have done."

Amanda took on the classic hero role, identifying as a caregiver rather than a person who provided care. Her sister Kim was the family conductor and quite skillful at spreading guilt around to all the other siblings while she remained above it all. Her brothers were detached from the family situation, both moving between the roles of ghost and villain. Amanda lacked the skills to get her needs met and was pushed deeper into the caregiver role through irrational thought and unrealistic expectations of others, both self induced. But things got better for her.

She eventually joined a support group and attended counseling. She sold the family house and returned to work first at Dunkin' Donuts, then back at the nursing home. It took time, but she did get her life back on track and continues to work on her relationship with other family members.

"I love working at the nursing home and I love the residents," said Amanda. "It's different for me now. I work here because it's what I love to do, not because it's what I need to do. Once you learn to have a voice and view things more realistically, it's like the weight of the world is lifted off your shoulders."

We discussed family roles in this blog to help caregivers understand why they may find themselves reacting to stress much differently than other people. Once you come to understand irrational belief systems and the poor choices that are made because of them, progress can be made. Next week, we will begin looking at some tools to begin the change.

If you find yourself becoming entrenched in any of the roles we discussed above, it's time to seek support. There are ways to manage stress. You can start by contacting the Alzheimer's Association support network by clicking on the button below.