Caring for the Caregivers, Part 3 - "Where the Seeds of Toxic Caregiving are Sown"

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.

One of the most stressful situations in life

Now, to be fair, this is not to minimize the stress of taking care of a loved one because it is tremendously stressful, 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 if you are one of them, help you know that you are not alone) and discuss some behaviors that may help you eliminate some self-induced stress while adopting some skills to proactively take care of yourself.

"In this week's blog, we're going to take a look at the family system and how those things we learn become major contributors or major protectors from the stress of providing care," stated certified elder law Attorney RJ Connelly III. "What occurs early in the family system sets the tone for all future interactions with family members, friends, the environment, and ultimately, in the individual's own thought processes."

"What occurs early in the family system sets the tone for all future interactions with family members, friends, the environment, and ultimately, in the individual's own thought processes." --- Attorney RJ Connelly III

As Attorney Connelly stated, in all families, roles are formed at an early age to help the family unit negotiate everyday issues that may affect everyone within the group or the unit itself. This is a necessary part of learning to negotiate with the real world, coming to understand that people, families, and even individuals live in an imperfect world and make less than appropriate choices from time to time. In most cases, a healthy family unit provides a structure and support to help the family member learn from those mistakes. 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.

Stress leads to physical illness

But what about a family that lacks appropriate role models, or one which never finds equilibrium because one of the members is chronically ill, or has an addiction or a mental illness and is always in a state of flux? A sick family member means that behaviors begin to develop aimed at protecting not 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 continue even in the absence of the problem. The result is, 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 everyday problems and a very skewed view of the world. Let's look at a real family.

Amanda's Story

Amanda was the firstborn of four children. She had two younger brothers, Wayne and Steve, and a younger sister, Kim, born just after she was. Her father was a good provider but a functional alcoholic. He went to work every day, even holding a very responsible position in the company he worked at, "but as soon as he walked in the house from work, he went to the home bar he had built and had several glasses of his favorite vodka before he would even say anything to mom or us kids," said Amanda.

An abusive situation

"Mom stayed at home and took care of the kids, the house, and dad," Amanda continued. "There were times when dad would get so drunk, he would urinate on himself while sleeping on a lounge chair, leaving mom to clean the mess -- and she said nothing. Other times, mom became his favorite target of abuse, accusing her of cheating or spending too much money and at times being slapped around when she dared to stand up to him."

As the abuse continued, the kids found reasons to stay out of the house longer, leaving mom at home to deal with a drunken husband. "Things got so bad for mom that she ended up going to a psychiatrist and he prescribed her Valium, which turned out to be the beginning of a downward spiral for her," Amanda continued.

As her siblings aged, Amanda took over parental roles, getting the younger ones ready for school, ironing clothes, and even attending teacher conferences with the excuse that her dad was working, and her mother was extremely ill. "Wayne was a handful," said Amanda. "He was always in trouble, the police brought him home countless times and his drinking was out of control by the time he was a junior in high school. He got in trouble for selling pot in his senior year and was expelled. Dad always blamed him for why he got drunk, saying that if Wayne were gone, things would be better."

Eventually, they all managed to escape the home with Amanda being the last one left, now leaving her to become a surrogate wife to her father, washing dishes, cleaning clothes, and cooking meals, as her mother became increasingly dependent on her Valium and was unable to function during the day. Upon meeting her first boyfriend, she got pregnant, married, and left the house. She was just twenty years old. "I didn't really love the guy; I was just looking to escape that hell hole I was living in."

Amanda had two other children and moved with her husband into an apartment in southern Rhode Island. Amanda's husband was abusive and an alcoholic, coming in late at night and often beating her because she did not have food ready for him or she was sleeping and not awake to greet him. "My role model was my mom," said Amanda. "I would clean up his vomit, wash the liquor out of his clothes, and never complain. I also saw telltale signs of him being with other women, but I kept my mouth shut and was the compliant wife."

"It was always the same story, he apologized, and I accepted it...he accused me of sleeping around and gave me the worst beating I even had. Yet I still kept my mouth shut." --- Amanda

"It was always the same story, he apologized, and I accepted it," said Amanda. "Then I became pregnant with our third child and during a routine exam, the doctor found that I had a sexually transmitted infection. When I confronted him, he accused me of sleeping around and gave me the worst beating I ever had. Yet I still kept my mouth shut."

After the birth of their third child, Amanda’s husband left her for another woman. Shortly after this happened, her father was diagnosed with cirrhosis of the liver and died shortly thereafter. Her mother asked her to move back into the home with her children, which she did. As her 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.

Valium sent mother into a downward spiral

Amanda kept this job for twelve years and as her kids graduated grade school then high school, she began to look forward to having some time for herself. Then came devastating news, her mother was diagnosed with Alzheimer’s disease. Amanda kept her job at the nursing home, took care of her mother, and babysat her first grandchild for a few hours each day.

Eventually, her mom needed more supervision and when Amanda reached out to her sister Kim, she was told to “quit her job” and "remortgage the house" to take care of their mother. So, 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 anyone who would listen, including other family and friends, but it didn't take long for Amanda to begin to feel the pressure of being a full-time caretaker for a mother with dementia.

"When I was working at the nursing home, where I had cared for multiple people with dementia, I was only there eight hours a day, got breaks and vacation time, and even had support groups we could go to. At home with mom, it became a twenty-four-seven job with no help, no vacation, no time off, and nobody to talk to. It was all so crazy," she lamented.

"At home with mom, it became a twenty-four-seven job with no help, no vacation, no time off, and nobody to talk to. It was all so crazy." --- Amanda

Meanwhile, her brothers had their own issues. Wayne was an alcoholic who was in and out of treatment programs and living in a sober house in Massachusetts. Steve had moved to Philadelphia where he worked as a bus driver for SEPTA, that city’s transportation system. She knew her brothers would be no help to her, but she hated reaching out to Kim because "it would be admitting that I was weak or something, and I was always in a competition with Kim who seemed to get credit almost all my life for things that I did," Amanda said.

No one to help

It reached a point where Amanda had no choice but to reach out. “I ended up calling Kim multiple times, and every time it was the same thing, she would tell me what a fantastic job I was doing, shutting me down from telling her what I was feeling and experiencing. 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 would get better, and quickly rush 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 off 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. “[Steve] 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 that what I was doing with mom was a difficult job. 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. It was more than feeling stuck, I was getting sick, physically and mentally."

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.

Spent extra time out just for a break

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

The talk among neighbors had to do with Amanda leaving the house for extended periods of time. And of course, the neighbors who were watching her mother would call her sister Kim and let her know of their concerns. Kim was told that Amanda didn't "seem to care anymore" or that she "didn't care who she left her mother with." And Kim shared this with her brothers, even the one she claimed to be "a chip off the old block."

“Those words really hurt me. It was like someone kicked me in the stomach. I was there all day, every day, week in and week out. 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 or hearing more stories about me that contributed to more feelings of guilt,” stated Amanda. "The house and my mother became a world in which I was a prisoner."

"So, I stopped going out for fear of being accused of neglect or of harming my mother or hearing more stories about me...the house and my mother became a world in which I was a prisoner." --- Amanda

“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 in 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 all the time."

Accused of "putting mom away"

"Mom got sicker and had to be hospitalized," Amanda stated. "I then called the local Alzheimer's Association and got some really solid legal and personal advice. I went to see Attorney Connelly for help with getting mom on Medicaid and advice on estate planning for her. She was then placed in long-term care and suddenly I'm home alone, still getting bad-mouthed by Kim for putting mom 'away', as she called it. But I don't feel any better. Even though I took care of her for years with no help, I feel guilty as hell and like I didn't do enough."

"My sister is now 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 for a change, like I don't owe anyone anything. I just wish someone in my family would thank me for taking care of mom. Instead, I sit around anxious and wondering what more I could have done."

Dysfunctional Family Roles

Labeling people is something that should always be avoided, in most cases, it is the behaviors that need to be labeled and not the person. But for the sake of understanding family roles in the dysfunctional family system, doing so here will give a better understanding of the dynamics in the family and how that impacts physical and mental health, communication skills, and interactions with others. Family members may play more than one role at a time, and roles may also switch if family members leave the system.

If these roles are not addressed and changes made as life circumstances change, 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" will never end well. Let's look at these roles.

The Family Hero

The use of this term should in no way be viewed as a mockery of a caretaker who takes this role. In many ways, they are indeed the family hero, taking on tasks and responsibilities that other family members shun or refuse to do. But how far does heroic behavior go before it becomes pathological (compulsive or obsessive)? For instance, is the person in the family hero role doing it because they want to or because they believe it is expected of them? If it is the latter, it does not bode well for the 'hero's' long-term physical or mental health.

Every hero has their kryptonite.

In many families where dysfunction is the norm and roles are clearly defined, the "hero" is usually the oldest child, the oldest daughter in most cases, or a spouse who is the only family member left living in the home with the ill family member. The 'hero' takes on the role of being responsible and tends to overachieve, giving other family members or outsiders the mistaken impression that they have everything well in hand. Unfortunately, the appearance of well-being often hides the 'hero's' inability to communicate appropriately that they need support to continue to carry out the caretaker tasks on a long-term basis.

The 'hero' handles everything - medical appointments, legal issues, financial tasks, and other chores needed to keep the sick parent safe. This role allows others in the family to look on him or her as "the rock of the family", as they are doing all the right things for the parent. As other family members and friends heap praise upon them for the work they are doing, the 'hero' finds it increasingly difficult to ask for help, often feeling they are letting others down in the family if they do. And here's the kicker -- although other siblings hide behind the hero, there may also be a growing resentment among them for the attention the 'hero' is garnering from outsiders and can't wait to find a fault in the family hero that they can exploit.

"Here's the kicker -- although other siblings hide behind the hero, there may be growing resentment among them for the attention the hero is garnering from outsiders and can't wait to find a fault...they can exploit."

The compulsive drive of the 'hero' is not without its problems as playing this role leads to stress-related illnesses and overwhelming frustration as they feel guilty if they reach out to others for help. And because others outside the family see them as 'saints', they continue to try and overachieve to live up to the unrealistic expectations of others and avoid negative criticism from other family members. They must keep the facade of invincibility that feeds their irrational thought processes regarding how others see them. But it can get worse, much worse.

In extreme cases, the 'hero' becomes the figurative apex of morality. Much like a clergy member, they are expected to take a "vow of celibacy" by other family members and outsiders who revere the work they do, they must renounce all their own emotional needs in service to the sick family member. As this extreme role continues to grow, it further solidifies how others view the 'hero' and any deviation, no matter how small, becomes the fodder of gossip among those who see the saint falling. And for the jealous siblings, it's a "see, I told you so" moment, as their subconscious desire for the 'hero' to fail has been realized. So, what happens if or when the mighty 'hero' falls?

Should this occur, the family hero ends up feeling isolated, drifting along in a world of false pretense, unable or afraid to experience intimate relationships, and questioning what they really want out of life. Family members begin to judge them on the smallest mistakes, friends also begin to judge them when they see the 'hero' step out of the caretaking role. 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. They become controlling, suffer physical illnesses, and may turn to substances for relief.

The “Conductor”

The conductor of the family is a master manipulator. The conductor orchestrates the roles that other family members play and may even search out a "villain" of the family so that they have someone they can point at and wag their finger. This person enables the hero through maintaining his or her behaviors by constantly paying tribute to their "selfless giving", but behind the scenes, the conductor is really manipulating the hero to do the work they don't want to do and set up other family members to battle each other.

Keeping the orchestra in tune.

The conductor's behaviors are aimed at pitting family members against each other to cover his or her own feelings of guilt about not being able to or not wanting to help take care of the parent in need of a caretaker. In some cases, the conductor may 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, in the conductor's words, is "trying to control everything." Although this person appears to be the one providing nurturance to others in the family it is a self-serving behavior that is dysfunctional at best and devious at worst.

The Villain

The "villain" of the family is the sibling who feels exceptionally guilty about the family situation and acts this out by involvement in several unacceptable activities, including drinking or drug use, criminal activity, promiscuous sexual behaviors, or anger against other family members.

The family scapegoat..

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 his or her inner circle experience a person who is shallow and inauthentic. For the villain, this is not a new behavior and is 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 families. They retreat from the family chaos, usually 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.

Hidden in plain sight.

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, taking care of animals, or being overly involved in amassing material possessions 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 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.

Crying behind the facade.

The anxiety of the “cool one” is often too much for them to bear and they may use alcohol or drugs 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 seriously”.

They are also exploited by the conductor who can move this sibling between the role of "villain" and being "the cool one." This person is being consumed internally by their overwhelming anxiety and sadness, so they try so desperately to hide those feelings from others.

The 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 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 very quickly.

How Much Dysfunction is Dysfunctional?

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 while dealing with both the pleasant and unpleasant tasks of being a family member. They can maintain themselves, their identity, and their own families. They can give and receive nurturing. They can establish a network of intimate and friendly relationships in which they can experience love and belonging.

We're all chained to our family of origin.

They learn to respond to family issues and not react to them, and because they had an opportunity at an early 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.

Dysfunctional Royalty

We have reviewed these roles and we see that each one has a purpose in protecting the family, its members, and the individual. 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 always be in control (something not possible) 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, it's who they are. They take jobs early in life where caregiving is the central theme. They are always the ones offering advice to friends even if it's not solicited and get angry if that advice is not taken. If a family member becomes ill, they jump in with both arms and both legs and will fight to maintain control of the situation.

"For these people, caregiving is not a profession, it's their identity, it's who they are. If a family member becomes ill, they jump in with both arms and both legs and will fight to maintain control..."