The care and assistance that many people with MS receive from their spouses, other family and friends is a key factor in their ability to maintain their quality of life and independence in the community. Meanwhile, these family or friend caregivers also need support to maintain their own health and quality of life. With appropriate support, it is possible for caregivers of people with MS to have a balanced and healthy lifestyle.
The effects of caregiving
Many family members and friends willingly provide significant care and support over the course of many years after someone they care about is diagnosed with MS. This can be a positive and rewarding experience for both the caregiver and the person with MS. Relationships may be strengthened as family and friends join together to deal with the daily challenges of living with MS.
However, caregiving can also be very demanding and challenging work that significantly affects a caregiver’s life and health.
Caregiving often requires much physical and emotional energy.
Caregivers may also become isolated as they have less time to devote to friendships and leisure activities. At times, the demands may seem overwhelming as caregivers juggle many caregiving and household tasks, often along with parenting and employment responsibilities. Given these realities, it is not surprising that caregivers frequently report that their caregiving role has had a negative effect on their own health and quality of life. Without support and opportunities to re-energise, a caregiver’s physical and mental health can suffer. Clearly, this is not a good situation for anyone. Eventually, a caregiver’s health may worsen to the point that he or she can no longer care for their friend or family member.
There is a growing recognition that caregivers should be able to provide caregiving support to their loved ones without sacrificing their own health and well-being. Carers need support so that caregiving does not become the sole focus of their life and so that their own needs and goals are balanced with the demands of their caregiving role.
Caregivers’ needs
Caregivers are each unique individuals with varying situations and needs. However, there are some needs that are commonly expressed by many caregivers:
Recognition and appreciation
Caregivers want to be recognised for their work. They feel supported when health care professionals, the person with MS and/or other family members express recognition and appreciation of the significant role that they play in supporting the person with MS. It is also important to recognise the impact that their caregiving role may have on their life, and to acknowledge their related need for support.
Encouragement to take care of themselves Caregivers often put the needs of the person with MS ahead of their own needs. They may be reluctant to focus on their own needs or seek support for themselves when they feel that the person with MS has unmet needs. As a result, they may need to be encouraged to make their own self-care a priority. Sometimes, they may also need assistance to identify their own needs and think about the type of support that will enable them to maintain their own health and quality of life.
| Breaks or relief from their caregiving responsibilities
All caregivers need regular opportunities to have a break or feel some relief from their caregiving responsibilities. Caregivers can be re-energised and experience a sense of emotional, psychological, spiritual, physical and social relief or renewal in many different ways. In some cases, it may be a physical break or time away, while in other cases it might simply be a chance to do something enjoyable that gives them a brief mental break. Different caregivers often want and need different types of breaks and support. Caregivers can be encouraged to think about creative approaches that respond to their unique preferences, situations and needs. Some approaches used by caregivers of people with MS include:
- A holiday or break away (together with, or separately from the person with MS)
- Household help such as home cleaning or garden maintenance
- Fitness programmes and sports activities
- Hobbies such as crafts, gardening,woodworking
- Individual or family counselling
- Taking a course or learning a new skill for fun
Information and education related to their caregiving role
Caregivers often want information about MS and relevant treatments. They also need information about how to access support and services in their community. Some caregivers also want training in specific caregiving tasks.
Supporting caregivers
There is no single type of programme or service that will meet the needs of every caregiver. It is important to respond to carers as unique individuals and offer options for meeting their needs in ways that are flexible and creative. There are some key elements of support that make a meaningful difference in the lives of caregivers of people with MS:
- Providing opportunities for caregivers to identify their own needs and goals and to be able to make choices about how their needs are addressed;
- Providing support that focuses on enabling caregivers to maintain their own health and quality of life rather than just keeping them in their caregiving role for as long as possible;
- Recognising that programmes and services that support people with MS are also important to caregivers because they feel relief when the needs of the family member or friend they care for are being met through quality care and enjoyable activities;
- Recognising that people with MS also benefit when their caregivers have access to appropriate support because they are less concerned about the caregivers’ well-being. A rejuvenated caregiver is able to provide better care.
MS societies, health care and social service professionals as well as other family and friends all have an important role to play in supporting caregivers and people with MS on their journey together. Flexible support that responds to the unique needs of individuals and families is key to enabling caregivers to maintain a caring balance.
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