The purpose of this essay is to examine the effects of loss for an individual for whom I have cared for - learning disabilities

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The Effects of Loss

The purpose of this essay is to examine the effects of loss for an individual for whom I have cared for. This will include the effects this has on the person's well-being and their significant others. I will then analyse the role the Learning Disability Nurse has in helping the individual adjust to the loss they have suffered.

The effects of loss can mean different things to different people and occurs in a variety of differing contexts. It is the experience of parting with an object, person or belief that one values. Freides (2001, pg89) defines loss as a 'failure of anticipated stimulation or reward and is understood to refer primarily to social relationships.' However it is not just about losing someone through death, we can come across it in a number of situations. Such as the separation from loved ones, bereavement, birth of a baby, incapacitation, unemployment, retirement plus many more which encompass us to a whole range of emotional experiences (Markwick et al, 2003). It can be minor or major depending on the perception of the person experiencing the loss and with the right support the person can overcome the loss.

People with learning disabilities will experience many losses and are often denied the opportunity to go through the grieving process associated with loss. This is due to overprotection from carers who are unable to cope with the reactions to the loss (Jukes et al, 2003). Secondly carers may misrepresent or unrecognised the loss the person has encountered due to communication difficulties (Murray-Parkes et al, 1998).

Having observed the individual chosen I have selected choice as his loss as this is a fundamental human right (O'Brien et al, 1999). Many people with learning disabilities have encountered the denial of choice over the years, especially those who have lived in institutions and hospitals long term (Carnaby, 2002). Choice is very high on the political agenda, the government recognises the importance of allowing people with learning disabilities the right to make choices and to be supported were needed through advocacy.

For confidentiality issues the individual's name has been changed, therefore he will be known as 'J'. J is thirty-seven years old and has lived in full-time care since the age of thirteen. He has been living in his current home for the past two years which is a high dependency unit for people with learning disabilities. From the age of six he was diagnosed with Lennox-Gastaut Syndrome (LGS) a severe type of epilepsy with no known cure. J reached all his developmental milestones upto him having his first seizure at the age of six. He then started to show signs of regression leading to the onset of unacceptable behaviour, such as uncontrollable screaming and aggressive tendencies towards family members. Glauser (2002) found that the severity of seizures, frequent injuries, developmental delays, and behavioural problems take a large toll on even the strongest family structures. At thirteen his parents could no longer cope with his behaviour and this was why he was placed into care.

From his first seizure J and his family have suffered many losses. Turnbull (2004, pg 121) suggests that personal choice defines and expresses an individuals' total being if this is taken away from them they encounter many more losses, such as his rights to independence, self-dignity, self-esteem and self-identity. The most profound loss for his parents is a son that will never be able to participate in family activities. J has lost his place in the family, he is not only a son but a brother and an uncle and this could cause upset to him and his family as he will never take on the roles due to his severe learning disability and syndrome. As J deteriorates because of the syndrome he is showing signs of lost interest in his family when they visit. Two years ago he often asked when his parents were coming and enjoyed their visits. However on recent occasions J has paid little attention when they visit and stays in his bedroom.

Choice can be defined in a number of ways such as the 'act of an individual's selection of a preferred alternative from among several familiar options' or as 'a response to a situation, where the response is one of a number which is possible to that situation'.

(Jackson and Jackson, 1998 pg 22)

Markwick et al (2003) and Tait and Genders (2002) found that the range of choices made by people with learning disabilities could be the result of a range of factors. The environment where J lives can restrict his choices as there are not always enough carers to assist him on a one-to-one basis. There are also a range of individual's with learning disabilities living there meaning limited resources and convenience of saving time have been used as a way of allowing his choices to be made by carers. Attitudes and assumptions are an enormous factor, carers feel that he is not capable of making choices and they feel they know what he would choose anyway and therefore do not offer him choices.
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Factors such as the effects his syndrome and medication have on him should be considered. The Epilepsy Foundation in America (2003) found that anti-epileptic drugs lead to poor motivation, negative self-esteem, irritability, impulsiveness and disinhibition possibly producing behaviour problems and psychosis. This repeated disruption of consciousness interrupts memory and learning.

Shorvon (2000) found that prolonged administration can have profound side effects, especially as the dosages are high quantities. Currently J is being administered the following medication to provide a drug management process for Lennox-Gastaut Syndrome. Phenytoin, Levetiracem, Tegretol Retard, Diazepam and Clobazam are given to attempt ...

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