Carers

Carers exist in all communities. Identifying carers can be difficult: many people who care for relatives do not see themselves as carers, and in some relationships the identity of the carer is complicated because there is interdependence. An informal or family carer is defined as a person who takes unpaid responsibility for the physical and/or mental well-being of someone whose needs for help in daily living are seen to be greater than normal, because of illness or disability. Being a carer involves doing things for others on a regular basis. It can be a 24 hour commitment or it can be less.

Most caring takes place in families behind the scenes, usually unnoticed and unpaid. It is sometimes quite difficult to draw the line between what someone does as a member of a family and what constitutes being a carer.  It is important for agencies and service providers to readily recognise the presence and role of carers and identify ways to making caring a positive role for people.

Attitudes towards caring are very diverse. Some people find it fulfilling and in many ways enjoyable. For others, it can sometimes be a difficult job with inherent emotional and physical burdens. It is probably fair to say that caring can be all these things at some stage or another. Like many jobs there are good and bad days. It is the services and resources available that can ensure caring is a worthwhile experience for both the person being cared for and the carer. There are many issues facing carers, from the skills they need to the economic and social costs of giving. But just as importantly, the needs of the carer must be taken into consideration. After all, if caregivers’ needs aren’t met, they are unlikely to be able to carry out their role to the best of their ability.

State provided carers offer much support to both the person with MS and the family. Many families rely on the services of paid carers to supplement the care provided in the home.  These carers provide specialised care such as getting someone up in the morning or allow the main family carer to have a break or do some chores.

In addition to carers some families and people with MS use other caring related services. A home-help can take the pressure off a family by taking over some of the household chores; a PA can help the person with MS can assist the person with MS to carry out their work or business affairs, a personal attendant helps with personal hygiene care such as bathing.

Managing Care, Managing Medicine, Breaks and Respite, Grief and Loss

Managing Care
The level of care needed for a person with MS depends on the needs of that person. Many people require little or no formal care and manage their MS with general support from the family. However, the needs of a person with MS can change over time and the need for informal and formal care can develop. Many families take on the role of caring and usually one person emerges as the main family carer. As the level of care grows it is beneficial for the family to introduce a care plan.

Managing Medications
Managing medications can be a strong feature of caring. There are two types of medication: those that require a doctor’s prescription and those that do not.  It helps to have an understanding of why the person you care for needs to take any medication and be aware of any potential side effects. 

Breaks and Respite
Caring can be physically and emotionally exhausting. Regular breaks from caring can help to relieve stress and exhaustion for the carer but can also provide benefits for the person being cared for. The sort of break you take will depend on what suits you, and the person you care for, as well as the services that are available in your area. Breaks may be taken in your house or away from it. They might be for a few hours, a day, overnight or longer. It might mean that you go to an exercise class, attend a wedding, and catch up with friends or family. Breaks may be provided by family members or by services in your area.

Many families with MS reply on respite care to provide more specialized or prolonged care. This care could be for days or weeks at a time outside the home. Respite solutions maybe available in the local community.  Contact your local Regional Office for more details. MS Ireland also provides respite care in the MS Care Centre

Grief and Loss
Death is an inevitable part of life but as a carer, death can be a more apparent and imminent.  If you care for a family member death brings not only the loss of the person you care for but also the person you have known and loved as part of your family.  Paid carers can also come particular close to the person they care for and their death can be very emotional. Death affects people in different ways and the grieving process is something people experience in individual ways.