Caregiver: assignments, feelings and needs of becoming a home care professional
The individual who is a caregiver is considered a person who is capable of overcoming obstacles, of breaking the untimeliness of everyday life when it comes to being a caregiver, besides absorbing the demands and changes.
As a caregiver, this person makes use of his/her mental capacity and habilities on behalf of other people, kindly, simpathetically and tolerantly. In moments like that, the caregiver acts with empathy, with his/her “heart opened”, expressing concern, accountability and compassion regarding other people.
O:: first of all, everything we do is with love, and love teaches us, it encourages us, it improves us. Every thing that has love on it perseveres, we learn things, we keep learning throughout days, hours, minutes and seconds. (Interview C8).
É:: I feel very useful here, so I don’t know if she is satisfied with me, right? But those things that I know how to do, I’ll do with all the love from my heart. (Interview C16).
As a home care professional, it is mandatory to listen actively and tenderly in order to capture the needs, fears, wills and feelings of the patients. Connected to this process of listening to others, it is necessary to speak in order to report the professionals the expressions, looks and discourses of the patients. Active listening also allows the understanding of the patients’ griefs, in a process of empathy, of feeling his/her needs and seeking to relieve them.
That person, the caregiver, also suffers because of the patient’s griefs, either physically, through pain, fears, sadness and the absence of relatives and beloved ones that are so crucial for the patients. Even because the patients are mainly elderly people and handicapped ones. This lack or absence of family support leads to work overload for the caregiver. However, it also causes sadness because that professional is able to perceive the discouragement of the patient in terms of the lack of affection, communication and interaction with family members.
Being a caregiver is being a companion for the person, it means exchanging life experiences with him or her, right? :: it means to exchange feelings, to place yourself on the other person’s shoes and :: their needs, right? […] Then, you are able to tell the health professionals what you have heard or lived. (Interview C22)
That’s because you see, you hear with your heart all that atmosphere of grief and pain and you do not see, for example, a solution, you see? And then you get worried and sad. (Interview C28)
So, the person gets upset on his/her birthday, on Christmas […]I also get upset, […] and the pain and grief of the patient, the fear of him/her getting hurt, of doing the wrong things, we end up feeling that pain too. You establish a bond, love, when you see the person crying, you cry too, when the person is in pain, you can feel it too. (Interview C16)
The caregiver must analyze the situation very carefully, like through the eyes of an eagle, to assist the patient precisely, accurately, all the time. There is a constant monitoring of the patient. The caregiver who possesses the eyes of an eagle is very cautious and strategic, besides having as focus the normalization of the patient’s acts, so that he/she follows the preestablished rules and orders. That sharp and controlling look also intends to know the patient, to capture his/her needs and desires. It has to be emphasized that there is some reluctance by the patients concerning that monitoring and, consequently, regarding the impositions, driving to tension in care.
So, in order to handle the patient correctly, something always happens, he/she complains about pains and we were also hurting them, right? There is also that bedsore, so we know that he/she also feels a lot of pain. (Interview C27)
Taking care of him/her, taking him/her to the doctor, paying attention to how to give him/her the medications, being always aware of what he/she needs, right? (Interview C17)
All of the caring processes are associated to making decisions and applying measures. The caregiver is an active individual who seeks to solve the demands, someone who gives his/her best so that the care process can be accomplished entirely. It means to act responsibly.
It is :: enthusiasm, you know? The forces that he/she gathers, you see? Doing like that I have wills, I can do it, I seek it, I look for what is necessary for all the cares. (Interview C27)
The duties of the caregiver seem simple at first glance. However, when you look carefully, it is possible to realize that there are several feelings that inter-connect that care process and that lead to insecurity in the care process. This feeling of insecurity is sometimes associated to the lack of knowledge, which compromises the fulfillment of that task.
C28: Well! Actually, it is :: all you can see, it is :: even a matter of the need, itself, right? So, sometimes, something that you are not too skilfull to do, but even though you do it because of the need of doing it, in the beginning with some difficulties, and then you assimilate and you keep doing, somehow, even well, you see?
P: Yeah, I do.
C28: And the more time passes, the more you get familiarized with things, with situations, with the difficulties, and you keep trying to do it better, you see?
C28: There was nothing I did not know. So, even due to the experiences iself and :: living with other people too :: the struggle of being aware of :: the symptomatology of the diseases. (Interview C28)
C27: So, thus, the emotional side of those things are very important, right? I have many difficulties regarding this, the emotional side. […] it was very sudden, fast. (Interview C27)
Being a caregiver and its moral dimensions
Home care is strongly characterized by the moral dimension. The discourses express the feeling of social and moral obligation of the caregivers due to their roles that are represented in home care.
To me, it was, like that, magnificent, first of all because he was my father, right? So, it is satisfying, and :: it was really good, it is an experience, it is such an enormous lesson. (Interview C9)
That’s because, like, for example, we have always lived together, everybody has always been so connected at home, everybody has already experienced very bad moments and they were always gathered as a family. I think that nothing else now is the same thing, right? Now it is a problem that he is having, I think that the whole family is supporting. (Interview C22)
Most of times, unfortunately, it is still the daughter, or the wife, it is just another imposition. Generally, is… generally it is who was available to provide all the care, when it comes to children, it is almost always the mother, in the case of the domicile, the husband, the man that gets sick generally will demand care from the wife or daughter, when it comes to the mother, it is generally the daughter. (Interview E4)
It can be observed, in those narratives, the feeling of obligation attached to the role played by wives, daughters, granddaughters, of taking care of their relatives. In parallel, the wife plays this role through the contractual relationship, for the promise made of always being together, of taking care of each other.
Caregivers, in the face of the moral codes, explain that becoming people who provide home care comes from a natural and subjective feeling, bonded to the commitment, built throughout years of family coexistence. But they also carry the moral obligation, or the burden of the cohabitation agreements established during the relationship with the patient.
The partners generally take care due to obligation, a result of the marriage agreement and also because of the kids, who take place in the family. The reasons for doing so are feelings of affection, gratitude, solidarity or a moral duty, an obligation, a desire of repaying, the desire of getting back the same care.
A:: being a caregiver, above all, means to have all responsibility, all affection, all goodwill with people you take care of, right? Because the person that suffers from the difficulties of the disease, and then you have to be there just in time for everything, at every moment, to do things the best and possible way we can and also to help the person. In my case, there is something even more special due to the fact that he is my son. (Interview C28)
That kind of medical care drives to an increase in costs with health services, which, in general, are associated to feelings and sensations that coexist in a duality between the duty of taking care of the patient or the obligation of providing financial resources for his/her care. There is also the obligation of the caregiver of always being physically and emotionally well in order to do all the activities for and with the patient.
Look, he retired due to disability because :: he just couldn’t walk anymore, he was already on a wheelchair. So, he used to receive a minimum wage, but I used to work, I used to make snacks/savories, dear girl, we used to make all of that at home, right? and :: and that’s how we have been surviving. And there were some people that sometimes donated something, right? Sometimes a friend, a priest who was an acquaintance of ours, but is wasn’t like, you know, something regular, in which every day there was something to eat :: sometimes, but God blessed us, so we endured everything, throughout all these years. It has been :: well :: saving, here at home we used to use like that, spending money with cleaning supplies and food and :: an EXTREME saving in order to not let something lack for him, and he died in a scenario in which nothing really lacked in terms of food here at home. And I could donate many things that I still had, because we used to buy a lot, with great abundance. Every month I used to do, I received his paycheck and called there to :: bo (Name of the company) and I ordered things. (Interview, C9)
It can be observed, from that excerpt, that the caregiver has, indeed, some time to take care of herself/himself. When the caregiver works under the labor laws, there is a predetermined amount of time to perform all the caring tasks, thus having an established schedule to dedicate to all activities. This could turn caring into something less exhausting, with the possibility of having some time to rest and take turns of the responsibilities of the job. On the other hand, the caregivers who work casually, without all the labor rights, lack in psychological structure and time to dedicate to themselves regarding private issues and activities.
Oh, I do help :: (+), I always check her blood sugar, I dyed her hair, I help her, sometimes, to get dressed in some occasions when she can’t do it by herself (+) What else? ::, I make her food, I prepare, I :: take care of her dirty laundry, right? Hygiene. Even today I helped her to take a shower, to wash her hair, to comb it, so :: I cut off her nails, that kind of stuff. I arrive early in the morning and I leave at 6 PM during the week. (Interview C16).
Their background cause impacts and turnarounds in the lives of caregivers in terms of social, psychological, emotional and physical/functional aspects. The main indications of the degree of work overload are related to the conditions of the cared patient in the presence of dependence, comorbidities, various diagnoses that are physically handicapping, besides the existence of another sick individuals or those people that demand care and attention, at their homes, and the troubled behavior of the patient. The caregivers also mentioned the fact that they lived with the patient and needed to sleepover at his/her house, not to mention when they carried out something outside their own homes. Care cannot be detached from the background knowledge and life of the caregiver.
He is also a boring person, that annoys you, who perhaps, the, the patients have chronic conditions and their situations are not prolonged and there is also their family background, our background, most part of the caregivers, they are family members and they sometimes have this concern that many times the family is too big and the work overload is passed to a single person, or to two people, and it causes family argues, right? (Interview E6)
So it’s that constant monitoring, so it is like this:: it’s 24 hours a day right here, all the time paying attention, you see? So, it is not something that you do and then let it go, of having some privacy, it is always paying attention at it, do you understand? And every day there is a new request, it is a different grief. Then it is always a struggle with yourself for being there, every day looking to:: minimize the suffering, do you understand? (Interview – C16)
Therefore, there is a need of sharing the care with other caregivers. Even in the face of work overload, it can be observed that daily cares revolve around a minimum family circle (wife, daughter, nephew, parents, niece, granddaughter) and that other relatives occasionally help in that care when they pay visits to the patients and when they have time or free time to take care of the relative (son-in-law, sister-in-law, brother, son).
P: It is:: and besides the multidisciplinary care team, are there other persons able to help you? C27: Yes, my nephew, my mother-in-law, my father-in-law, it is::: my sisters-in-law when they come to visit us, right? Everybody helps a little bit. (Interview C27)
So, I should be more integrated to my kids, but, in practice:: practice is not quite my case, but I don’t, I don’t, I don’t complain, I don’t complain, because I do what I am supposed to do, and I always do my best. But everyone has their duties, like in, in::/ they should have the feeling of being able to be next to the other person, right? (Interview – C28)