Multiple sclerosis is a disease that affects not only the central nervous system. It often affects how people think about themselves and what they believe they can contribute to their relationships. These may in turn influence the emotions and physical wellbeing of the family and friends of people with MS. In many cases, living with MS leads family members to be even more appreciative and attentive to each other and attentive to their own physical and emotional well-being.
However, families are not always able to maintain this positive adjustment to MS - sometimes the relationship between a person with MS and their family caregiver can deteriorate so that the relationship becomes hurtful. This can happen for any number of reasons including the physical or emotional stress of the caregiver, the difficulty of the person with MS to adjust to increasing disability, or difficulties that the spouse or partner caregiver may have in managing both the intimate aspects of their relationship and caregiving needs, which may include bowel and bladder management or dealing with cognitive dysfunction. Caregiver stress is an internal experience that can result from the physical or emotional burden of caregiving.
When a caregiver responds to that stress by inflicting harm on the person with MS they care for, it becomes abuse.
It is important to be familiar with the different types of abuse:
Adult physical abuse: substantial physical injury experienced by an adult that results from cruel and inhumane treatment or an intentionally harmful act committed by any person.
Sexual abuse: any form of forced sex or sexual degradation. This includes forcing an individual to participate in or observe sexual behaviours.
Emotional abuse: this is the most difficult form of abuse to concretely define but it is generally considered the most harmful because of the long-term effects it produces. It occurs when individuals with power or influence over another use that advantage in a demeaning or aggressive manner or in a way intended to exploit or cause harm.
Neglect: the failure of a responsible individual who has adequate resources to provide minimal levels of care to a child or vulnerable adult. This minimal level of care includes health, nutrition, shelter, education, supervision, affection or attention.
Exploitation and theft: includes acts involving misappropriation of money or property, theft, and coercion to sign legal documents that benefit the offender. Vulnerable adults, those aged 18 years or older who are unable to manage their own basic living needs or require assistance to protect their interests, are particularly at risk of exploitation.
(Adapted from the US National Multiple Sclerosis Society Chapter Guidelines for Addressing Abuse and Neglect, 2002)
There is little doubt that people with MS are victims of neglect or violence, but the extent is not clearly known. Many US National Multiple Sclerosis Society chapter staff have provided anecdotal reports of abuse or neglect among their members. In a study of people with MS at the Mellen MS Center, Dr Jack Conomy and colleagues concluded that '. . .domestic violence among persons with MS appears common [and] . . . no age, race, gender, or socioeconomic group of people with MS is immune from personal violence.'
No one living with MS is immune to the possibility of abuse. It is believed that the pattern of abuse in families with a history of domestic violence pre-dating the MS diagnosis will continue and may escalate as the disease worsens and there are greater differences in the distribution of power among family members. Just as importantly, families with no previous history of domestic violence may find themselves in abusive relationships as a result of the stresses of living with MS.
Some indications that abuse or neglect are occurring include: - Bruises and welts that cannot be explained by falls or bumps related to mobility problems
- Bruises in the shape of a hand or familiar object
- Bilateral (two-sided) bruising
- Genital pain, irritation or itching that may be indicative of sexual abuse
- History of recurrent hospitalisations or recurrent injuries
- Untreated medical conditions
- Lack of necessary mobility equipment, glasses, or dentures.
When health care professionals, family or friends are concerned about the potential for abuse or neglect in a family living with MS, the first step is to acknowledge concern. A statement to the caregiver such as 'Everyone has a limit as to how much stress and responsibility they can take - how close do you believe you are to your limit?', is a useful way to begin the discussion. If there is an indication that the family is at increased risk it is important to refer them to appropriate health and social service agencies to ensure the safety of the person with MS and to identify resources that can help relieve caregiver stress. As with most harmful conditions, early detection and intervention is the key to preventing or resolving the physical and emotional damage that can result from abuse or neglect.
Since the laws around reporting neglect and abuse differ between countries, it is important that family members and health care professionals understand their responsibilities and know the relevant authorities to contact if they have any concerns.
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