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Lillemor Lindwall. No man is an island, according to John Donne . Illness and suffering are like rings in the water. When patients struggle, their family and network are deeply involved as well .
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Patients suffering from multiple sclerosis MS suffer from a severe chronic and aggressive neurological disease, which involves increasing paralysis and sight problems, in addition to other problems depending on which area of the brain that is affected . MS is stealing the energy and causes severe fatigue . Family caregivers are not a homogenous group, but rather heterogeneous and often perceived as the hidden patient . Several studies uncover that family caregivers usually close relatives struggle alone, merely existing while trying to create a life for their family and the patient .
From their close position to the patient, the family caregivers not only assist and care; they also suffer and grieve on behalf of their loved ones as well as on behalf of themselves. Still, the family caregivers are a silent group, trying to survive the chaos of the situation . Further, the concept of holism means that the whole is greater than the sum of the parts.
There is a strong commitment to the notion that no sphere nor dimension of the individual can be understood isolated only, nor take precedence over another . Why did the nurses forget the relatives? However, the concept of environment is emerging as a scientifically significant one .
Therefore the numbers of family caregivers expected to ongoing responsibility for family members will increase in the future . Most family caregivers take care of family members with complex and chronic diseases and with little or no prior training . Multiple sclerosis challenges roles and needs as it creates a frail balance in relationships .
The most common courses are either acute periods of worsening relapses or a more gradual progressive deterioration, or a combination of both . From the perspective of the patient, bodily dysfunctions lead to uncertainty, shame and bodily alienation . According to Lohne et al. Despite this, they never gave up but fought for their rights and their dignity. Families usually report uneasiness concerning their responsibility towards their sick ones, in addition to a daily busyness  which increases their experience of burden.
Based on a study by Knight et al. Partners of individuals with MS experienced unpredictability and uncertainty. Alshubali et al. Manesh and Abedi  found that family caregivers suffered differently at different stages of the illness: from shock, grief, denial and anger from the moment of the MS diagnosis, to gradually being confronted with financial burdens, disruptions in social relationships and career, which resulted in tension, exhaustion, vulnerability and isolation.
Spouses described their life as a prison, and missed achieving time and space for themselves. Additionally, their plans for the future had changed and their life had been strongly restricted . Aronsen found that the caregivers experienced strong symptoms of fatigue, had a higher risk of depression and a lower quality of life .
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Such feelings demand extreme energy, which is just what the caregivers lack. Due to the scarcity of research within this field we decided to focus on family caregivers daily experiences in a context of persons with multiple sclerosis. The purpose of this study was therefore to explore how the family caregivers experienced and narrated their daily life as caregivers for individuals suffering from Multiple Sclerosis.
This interpretative theory involves a hermeneutic approach that includes developing a new understanding of the whole, followed by the discovering of meaningful parts and finally of the meaning of the text as a whole. The participants were voluntarily recruited in , through the Journal of Multiple Sclerosis in Norway.
In order to attract as many participants as possible, the request was published twice in the journal. Nine family caregivers wanted to join the study, mostly spouses, but also siblings and parents. Four husbands and three wives participated as well as one sister. They were all between 34 and 73 years old, while most of them were between 50 and 60 years old. One of the registered participants was not available when the data collection was about to start.
The participants lived throughout Norway. The narratives were collected by individual qualitative research interviews. All researchers conducted tape-recorded interviews during autumn and spring The interview guide was open and with a focus on the caregivers own experiences of their role and life situation, as well as on their experiences and meetings with health care personnel. The narratives were rich and the participants were highly motivated to share their stories.
Based on Ricoeur [25,26], the analysis and interpretation of data was performed through a hermeneutic analysis. The second step involved a process of narrowing down the scope, which included types of codes and structures in the text  and the final step involved potential horizons of meaning p. To narrate is to unfold, according to Ricoeur . All participants joined the study voluntarily, based on their own desire. All personal identification was separated from the interview text and the participants were guaranteed confidentiality.
According to the participants, multiple sclerosis is a sneaking or creeping disease. Nevertheless, several of the participants had felt an uneasiness on behalf of their family member for some time. Despite this, when the diagnosis was finally made, it became as a shock. Prior to the diagnosis, everybody knew in advance about that multiple sclerosis was a devastating and exhausting disease.
After the diagnosis, social networks gradually disappeared and for many the family finances were put under a strain. Waiting for help, answers and results became a new lifestyle, and plans were put on hold. They had to let their earlier life and routines go as the disease unfolded. Uncertainty, vulnerability and bitterness overwhelmed the family as the symptoms progressed and every participant feared the future. Despite our focus on the experiences of the family caregivers, they focused much of their narratives on the patient. It was as if their own life had disappeared.
The silence was experienced as total: in many ways, the patient gradually developed cognitive impairment, which left the caregiver totally alone. A 56 year old woman and experienced family caregiver narrated her life of caring responsibilities for her sick mother, her demented father, her husband when he suffered a stroke, her sister with multiple sclerosis and brain tumor as well as her daughter with multiple sclerosis.
Her main experience was being invisible in the healthcare system:. And they never ask… and they never see you…. I have tried everything … and I have become angry and vulnerable. I have lost my confidence.click here
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And finally, I was so stressed. This was very hard for me I was never sick. She was the one that was sick….. And I felt very lonely. But sometimes then a quarrel builds up to a volcanic eruption…. Despite that this wife had a chronic disease herself, she found that the hardest part of her life was to ask for help.
Instead, she lived her struggle alone, never feeling that she did enough. Another wife experienced that her husband ended up in a wheelchair just six months after his diagnosis. They were told that there was nothing to do, and her husband immediately adapted to this. When he gave up, she was left all alone in the daily struggle:.
I was constantly angry and had suicidal thoughts.
Finally I got help from a psychologist, and I told her that I am not crazy I just need a little hope during the roughest time in my life 8. Her only son had been seriously ill, in addition to her husband suffering from MS. So she managed to find meaning and trust in her daily struggle. Then a totally new life gradually emerged. Unexpectedly their life had changed and the caregivers felt trapped by invisible boundaries. I had to stay home all the time.
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A wife of about 60 confirmed that she and her disabled husband lived a rich life together, although she also suffered from a serious disease. People recede. Despite living as an invisible prisoner the family caregivers, mostly spouses, gave more or less up their own lives to care for their partner. One husband was a man of few words, and had showed his love through actions.
They had nevertheless shared a good marriage and a great love, according to his wife:. So I started to play very lowly and put away all my anger….