A Coaching Power Tool By Milagros Echecopar, Evolution Coach, PERU
When we are not paying attention, dust settles in and covers everything until it’s difficult to recognize what is underneath all the dust. Imagine a yard that has not been tended to for a long time, all the leaves that get piled on top of the furniture, the plants, how the vegetation grows without any direction, and the many insects and animals that begin to populate the space. It looks, feels, abandoned. It’s not an attractive place to spend time in, and it is not fulfilling its role, that of being a place for relaxation, fun, a place for living in. In contrast, in a yard which is being tended to, occasional dust can settle in, but it is cleaned away before it impacts the furniture and the space significantly; plants do grow, but they have direction, not necessarily a precise order, but still, some kind of harmony is perceived; and you will find animals and insects, but they will be playing the role they have in nature’s life circle without intruding in the space of others. A yard like this is a place you want to spend time in, where you can enjoy yourself, live and build memories. A yard like this is fulfilling its purpose.
The same happens with us human beings. When we ignore our needs and feelings because we are focusing all our attention and energy on something else, we run the risk of emotions and behaviors that do not serve us settling in.
Disregard vs. Acknowledge How It Impacts Caregivers – Proposing a Different Perspective
Although it applies to all human beings, we would like to focus in this paper on how it impacts caregivers and propose a different perspective. If caregivers are not aware of their role and do not tend to their needs and feelings, they risk being like the untended yard. Some caregivers have that awareness and develop strategies to take care of the patient in the best way they can while also taking care of themselves. They build support structures, ask for help, and work on their skills and knowledge.
But there is an important number of caregivers who don’t. As Family Caregiver Alliance (2021) points out, regardless of age, sex, and race, and ethnicity, caregivers report problems attending to their health and well-being while managing caregiving responsibilities. And many do not even recognize that they are playing the role of caregivers. Easy Living (2019) draws attention to that behavior, indicating that for the family caregiver, it often feels like the duties are just part of being a family and that caregiving seems like a natural extension of filial piety. Caregivers disregard the notion of being more than a dutiful and loving relative/friend who has/wants to provide the best care possible to the patient. And that’s often the starting point of disregarding their own needs and feelings and the importance and the weight of the challenges they are experiencing. Who they are, what they need, how they feel is not crucial; what is essential is taking care of the patient in the best possible way. And here again, they disregard the fact that they need to tend to their own needs and feelings; to tap into the resources they have to get the knowledge and support they need; to develop tactics and strategies to be in a better position to deal with the challenges they are facing and provide the best care they can to the patient.
When we look at the definitions for disregard, we find many that may apply to the caregivers’ situation. For example, Cambridge Dictionary (2021) defines disregard as showing no care or respect for something; to ignore something; to not allow something to influence you. If we look at Merriam Webster Dictionary (2021), we find that disregard can be understood as the act of treating someone or something as unworthy of regard or notice. And the Oxford Dictionary (2021) defines disregard as pay no attention to; ignore.
Throughout conversations with different caregivers and from the various documents we have reviewed, we found that most of those definitions can be applied to how caregivers are inclined to deal with their new circumstances.
A person who has seen her/his life turned upside down from one day to the other; who will have to adjust her/his routines to take care of a patient with a disease or condition for which the help she/he can provide is limited; and who has a lot of unanswered questions about the future, can easily feel a need for a sense of some level of control, of not being entirely left without something to hold on, and for some degree of stability. And that can easily make caregivers turn to control as much as they can.
To do that, they can start to disregard their feelings, their needs, not only because the focus is on the patient now, but also because consciously, or unconsciously, they have a sense that giving in to them could make them lose control of that which is under their control, that which is giving them some sense of security, of stability.
Dealing with bad news, emotional ups, and downs, demands from own family on top of attending to the patient’s needs, conflicts with other family members, all that distress often translates into difficulties to express their feelings and needs. As a result, caregivers move into a pattern in which avoiding conflicts and dealing with the patient’s needs are the only vital tasks, and thus, as they take on more and more of the burden that the patient’s disease or condition entails, on the surface, their needs are no longer critical. But underneath all that, feelings like guilt, unfairness, distress, overwhelm may be growing silently.
Gallego-Alberto et al. (2020) found that it is not uncommon for family caregivers to abandon or dedicate less effort and/or time to vital areas other than caring, thereby creating feelings of frustration, disappointment, sadness, and/or guilt over their neglect. Additionally, as contradictory as it may seem, they also found that self-care and/or leisure and free time activities triggered guilt as well. In most cases, caregivers admitted that annoying thoughts and feelings of guilt frequently appeared when they participated in those activities. Moreover, the anticipation of guilt itself seemed to activate behavior patterns, mainly of evasion or control, aimed at avoiding experiences.
And those feelings and behaviors can be fed by others who inadvertently disregard the caregivers, their needs, and their feelings. For example, Gallego-Alberto et al. (2020) observed that family members’ complaints and comments about how the carer tackled the cared-for family member’s problematic behaviors were common sources of distress.
Additionally, when we talk with caregivers, we find that usually, the medical community’s focus is only on the patient. Their interaction with the caregiver (if any) is frequently limited to giving instructions on how to take care of the patient and, in better scenarios, offering advice on how to deal with the challenges of the patient’s disease or condition. For example, a caregiver we interviewed described how she felt tiny and almost nonexistent when doctors and nurses came into her husband’s room. She felt disregarded as an independent human being with feelings and needs that are a consequence of the patient’s disease or condition. Imagine how that adds to the feelings of helplessness, of inadequacy, a caregiver might be experiencing.
The caregiver her/himself can inadvertently contribute to those feelings. When the caregiver sees her/himself and is seen as the one in charge, they can take on more responsibilities than they should or are required to. This increases unnecessarily the burden of their role, having a higher impact than needed on their lives and contributing to feelings of overwhelm and unfairness. LeVine (2021) says that many family caregivers neglect to recognize their limitations and they set unrealistic goals about the amount of care they can provide; and that having impractical expectations in combination with an unhealthy attitude towards the acceptance of help is the quickest way to end up chronically stressed and on the road to caregiver burnout. And the paradox can be that other family members might want to help but don’t know if their help will be welcomed or how to help; and/or that there can be other ways of taking care of the patient that can reduce the demands on the caregiver.
In a study conducted with over 140 caregivers, Lappalainen, Päivi; Pakkala, Inka; Lappalainen, Raimo: Nikander, Riku (2021), found that thought suppression and psychological inflexibility played a significant role in explaining family caregivers’ symptoms of depression and anxiety. In addition, psychological inflexibility was significantly related to the quality of life. Therefore, they conclude, this suggests the need for acceptance-based strategies to handle thought suppression and psychological inflexibility.
Furthermore, Khalaila & Cohen (2016, P.915) highlight that:
Psychological resources and emotional suppression are significantly associated with depressive symptoms and should be considered when addressing family caregivers’ mental health. Psychological interventions designed to enhance personal mastery among caregivers may build a sense of control over the caregiving process and encourage them to take control of their situation. In addition, emotional interventions designed to increase emotional expression might be helpful to improve the emotional state and might reduce the caregiving burden and its negative mental implications. Psycho-educational interventions might be useful for caregivers, as these can increase their sense of competence and provide effective coping strategies to deal with caregiving burden.
Through coaching, we can work with the patient to look at their circumstances through different lenses. What if caregivers acknowledge that now they have an added role? That they are no longer only the patient’s spouse, partner, daughter, son, etc., that they are now their caregivers? How can look at their relationship with the patient from a different perspective impact how they approach their role, how they deal with these new circumstances, and the emotions that arise?
Moving From Disregard to Acknowledge Could Help Them
And that’s what we would look to work on with the client through coaching: partner with them so they can acknowledge their new circumstances, their new role, and the needs and feelings it arises, plus be conscious of the resources they have and how they can use them to navigate this new phase of their life in a better way. As Reeves (2021) indicates, it is helpful to know that people always experience thoughts, feelings, and sensations simply because we are human, and those feelings do not need to be acted upon; however, it helps to acknowledge them simply and compassionately. On a similar note, Rodriguez (2013) shares an experience with a client highlighting that once said client accepted his thoughts and feelings, shaking off his shame and guilt, he saw his problems with greater clarity and proceeded down the path to recovery.
What do we mean when we say acknowledge? Bringing formal definitions again, we find in Cambridge Dictionary (2021) that acknowledge is to accept, admit, or recognize something, or the truth or existence of something. Some definitions provided by Merriam-Webster Dictionary (2021 are: to take notice of; to recognize as genuine or valid. And based on Oxford Dictionary (2021), we can say that acknowledging also means accepting that something is true.
If the caregiver moves from disregard to acknowledge and thus, accepts, admits, recognizes, validates as true the way she/he is feeling, she/he can face those emotions and, therefore, understand what is causing them and how to deal with them in a way that serves her/him. If the caregiver moves from disregard to acknowledge and thus, accepts, admits, recognizes, validates as true that she/he can ask for help and that there are additional alternatives and resources available, she/he can come up with different tactics and strategies and thus, be able to take care of her/himself and improve their performance as caregivers.
What Is Preventing Caregivers From Acknowledging That? How Can We Help Them Move From Disregard to Acknowledge?
Family Caregiver Alliance (2021b) proposes that caregivers put personal barriers in the way to self-care, and the first task in removing them is to identify what is in the caregiver’s way. They indicate that those barriers can be that the caregiver thinks that it’s selfish to put her/his needs first, that they are frightened to think of their needs, that have trouble asking for what they need, feel inadequate if they ask for help, that they must prove that they are worthy of the care recipient’s affection and do too much as a result.
LeVine (2021), draws attention to the fact that many caregivers are reticent to ask for assistance because they view it as a sign of weakness or inadequacy. Abrahams (2021) shares that a new AARP study shows that only 46 percent of family caregivers ask for, or look for, help, and explains that caregivers give many reasons: avoid be seen as uncommitted, the idea that no one can do it right, the patient refuses help -and guilt trips the caregiver-, the caregiver guilt trips her/himself, the belief that no one else is willing to step up, etc. The contradiction here, as LeVine (2021) highlights, is that asking for help demonstrates not only the acceptance of one’s limitations but also brings to light the possession of admirable traits, including the following: honesty, responsibility, humility, courage. How much could caregivers benefit from this perspective! From acknowledging their limitations and viewing asking for help as a sign of “positive” personal qualities rather than as a sign of inadequacy, incompetency.
Furthermore, Family Caregiver Alliance (Emotional side 2021) points out that if caregivers don’t deal with ALL of their emotions, they can be like a two-year-old who wants their attention: they will keep tugging at them until they stop and acknowledge them. Additionally, not paying attention to their feelings can lead to poor sleep, illness, trouble coping, stress eating, substance abuse, etc.
Awareness and lack of awareness seem to be another reason why caregivers stay in a position of disregard. Gallego-Alberto et al. (2020, P. 6) explain that the non-experience of guilt by caregivers can be a marker of dysfunctionality linked to avoidance and passivity. Along similar lines, they point out that:
“The presence of guilt could be an indicator of functionality when this is a result of adaptative behaviors by caregivers, as in the case of those related to their behavioral activation (self-care and leisure activities) or assertive communication (request for help).”
Gallego-Alberto et al.’s (2020, P. 7) study confirm the complexity of the emotional experience in caregivers, as they are often not aware of their emotions, identify them with difficulty and give them another name or label. Moreover, they found that it was not uncommon for caregivers to deny or be reluctant to acknowledge experiencing guilt feelings. To top that, Cooper et al. (2008) stress out that guilt-denial strategies as a coping mechanism for tension in the caring process have been associated with more significant levels of anxiety.
As Gallego-Alberto et al. (2020) found, caregivers’ tendency to regulate their behavior to evade distressing experiences leads them frequently to avoid carrying out activities that would be important for them concerning their well-being or other areas away from care. They explain that caregivers can invest a great deal of effort to avoid feeling negative emotions about the people they are caring for.
Coaching Conversation For Caregivers
Through the coaching conversation, we can provide caregivers the space to express how they are feeling, reflect on what is causing those feelings, and identify the resources they have to deal with them in a way that serves them better. Just listening to themselves give voice to those feelings is the first step of acknowledging them, of taking notice, of accepting that they exist. From there, there are many avenues the coaching partnership can take to help caregivers acknowledge other aspects of their new role, how they are impacting their lives.
As caregivers become aware and acknowledge all that, they will feel more empowered to deal with their new circumstances; their need for control can tamper down; space for caregiver’s needs and feelings can be opened up; and thus, give room for creating new tactics and strategies with the resources they have and that can bring them a so needed sense of empowerment. They can also find productive ways to express their feelings and deal with them.
LeVine’s (2021) findings support this “when you notice your role as a family caregiver is affecting your quality of life, it’s important to take a step back and recognize you need help. Asking for help when you need it is not about giving up or passing the burden to someone else, nor is it an indicator of how much you care. Finding the courage to ask for help is about understanding how the quality of care you provide for someone else is directly impacted by the care you provide for yourself.”
Evidence is also provided by the results of Pettursdottir & Kolbrun’s (2019) study to evaluate the effectiveness of a two-session strengths-oriented conversation. Through that study, they found that the therapeutic conversation intervention offered resulted in perceived support, decreased stress, and decreased caregiving demands among caregivers. In addition, Easy Living (2019) indicates that studies conducted in the United States show that most family caregivers reported improved mental and physical health when they got support.
Family Caregiver Alliance (Taking care of you 2021) recommends different strategies that can help caregivers take better care of themselves and, thus, have a better quality of life during their caregiving journey and be able to be better caregivers. Amongst those recommendations were: recognize warning signals early, identify sources of stress, identify what caregivers can and can’t control, take action, set goals, seek solutions, communicate constructively, ask for and accept help, earn from emotions. Most of those recommendations are precise about what coaching is about. Therefore, there can be multiple benefits for caregivers from partnering with a coach.
Along similar lines, Gallego-Alberto et al. (2020) stress the need for therapeutic efforts to be aimed at helping the caregiver to adopt more adaptive strategies consistent with their values, even when they imply the experience of guilt. They consider that taking into account the difficulties involved in labeling and accepting their experiences, interventions with caregivers should promote the identification of emotions and acceptance while simultaneously working on the behavioral activation of the caregiver within their values.
Different Ways to Approach Disregard vs. Acknowledge
The coach’s role would be to help caregivers with the acknowledgment, emotional acceptance, and validation of their feelings. They could work with caregivers to help them acknowledge their new role as different from being a daughter/son, spouse, partner, friend. Acknowledge the challenges this new role brings related not only to taking care of the patient but also due to the impact it has on the caregiver’s life. Acknowledge their needs as a result of being now a caregiver and the changes it has brought to their lives. Acknowledge the feelings that arise from the patient’s disease or condition the demands of being their caregiver. Acknowledge the resources the caregiver has and can tap into if she/he recognizes them and asks for support. Acknowledge that there can be different ways to approach these new circumstances in their lives, which can bring some lightness and make this phase more fulfilling and even rewarding.
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Khalaila& Cohen use Pearlin et al.'s definition of mastery as the sense of being in control of forces impacting one's life as a resource related to a sense of internal personal control.