By Deborah M. Miller, LISW, PhD, Director of Comprehensive Care, Mellen Center, Cleveland Clinic Foundation, Cleveland, Ohio, USA

Carers are individuals who assist with the physical, emotional and daily management needs of people who cannot take care of all of those activities on their own. Carers can be either paid professionals, such as the staff of home care agencies, or informal carers, including family, friends or members of social or religious groups who provide the help without any financial compensation. This article will focus on family carers.

There are times in most people’s lives when they expect to be care-givers, for example when becoming a new parent or becoming more involved in helping their aging and frail parents. In the first situation, the parent care-giver looks forward to the experience of caring for the child. In the second situation, neither the adult child nor the aging parent want the need for caring to happen, but typically both the care-giver and care recipient have time to prepare for this and they see many of their friends and family members adapting to the same situation. Because MS can cause disability at a time when most people are in the prime of life, their carers have little time to adjust to this responsibility and have few other family members or friends who share their care-giving situation. Often care for a person with MS is required on a long term basis, possibly becoming more demanding as the care receivers needs grow.

For persons with MS, carers are most often spouses, young children living in the home, adult children living inside or away from the home, or aged parents.

Care-giving involves several types of activities. The type that most often comes to mind, “hands-on help”, can include typical housekeeping chores or more intimate kinds of help like bathing, dressing or helping to use the bathroom. Some of these chores can be taken care of on a routine schedule. For instance, the house gets cleaned every Monday or the week’s meals are prepared on Wednesdays and Saturdays. Others responsibilities, like helping to go to the bathroom, are completely unpredictable and must be addressed with alternative solutions, especially for those times when the carer must be out of the house.

Another aspect of care-giving is emotional support. Often the person with MS is very socially isolated and has few other contacts besides the family carer. Sometimes the most important help a carer can provide is being there to listen to the frustrations of the MS person about their loss of independence or not being able to care for the house by themselves. It can, at times, be frustrating, as the source of the MS person’s frustration may be about the quality of “hands-on” assistance that the very same carer is providing. Helping the MS person “manage” his or her life by helping or taking over personal finances, or making decisions about hiring and supervising paid carers is another type of care-giving. This type of care-giving can be welcomed either with relief by the person with MS or met with suspicion and frustration that the carer is taking over.

Whether or not the family carer is a spouse, a child or a parent, taking on such a responsibility has an impact on their other responsibilities, their health and their relationship with the person with MS. This change in relationship most often occurs as the carer becomes more powerful and the person with MS becomes more dependent. For married couples, in particular, this imbalance makes it more difficult to maintain a romantic relationship. Often parents with MS feel that their positions as parents are compromised as they turn to their children for help in meeting their daily needs. And when an adult child turns to an aging parent for care-giving help it seems that their relationship often becomes more complicated as they fall into the patterns of relating that they had 20 years earlier.

While many family members welcome and adjust very well to the caring role, the responsibility produces some level of physical stress and emotional strain. The physical stress can result from the activities of caring, including helping with transfers or the fatigue that comes from lack of sleep. The emotional strain often begins with the sorrow that the carer experiences at the changing relationship with the person with MS and their grief at the constant losses in physical and cognitive ability their loved one experiences as MS progresses. Many carers believe that it is much easier to deal with the physical changes than it is with the cognitive losses that “take away” the person they love. Other sources of emotional strain are the multiple responsibilities that the carer must manage and the social isolation that results from these many demands. Most family carers have many responsibilities in addition to the help they provide to their family member. One of the biggest conflicts that carers face is the need to work. This is essential to meet the needs of their family and to pay for all the MS-related expenses that are not covered by insurance or a national healthcare system. Because of this need to work for pay, many carers find themselves managing two full-time jobs, their paid employment and the caring, with too little time for being with other family members, seeing friends or participating in church, social or political activities. This leaves them with too many responsibilities and no chance of doing any of them well.

Some carers find themselves drained and frustrated because of the many physical and emotional demands upon them and have little opportunity to re-energize themselves. This combination can be very dangerous for both the carer and the person with MS, and, at times, results in the carer becoming neglectful or abusive. Sometimes it can be passive, by not helping to clean up the family member who has obviously had a bladder accident. Abuse may start in a seemingly innocent manner, perhaps by pushing or pinching during a transfer or scrubbing too hard while giving a bath. Sometimes the abuse can seem to come out of the blue, as happened when a husband poured a cup of boiling tea on to his wife’s lap rather than place it on her tray because she had been “too demanding”. While it is easy to understand how stressful care-giving can be, abuse or neglect is never acceptable. When a carer feels him or herself “burning out” it is essential to get help from other family members or medical professionals.

Most family carers are committed to caring for their family member with MS and consider it an act of love much more than a family responsibility. There are several keys to maintaining one’s capacity for caring. One of the most important is having the best possible communication with the person with MS. Maintaining this effective communication means being able to talk about the practical aspects of dealing with the MS as well and the emotional consequences both family members experience. This could involve the ability to have potentially difficult conversations, for example, about the carer’s need to maintain some of the activities that the couple used to share. It can be difficult to maintain this positive communication as so many unwanted changes occur within the relationship. For this reason, it can be very useful to receive counselling from a mental health professional. Such a professional can assist with developing good communication techniques, such as identifying the best time to have potentially difficult conversations, not blaming the other person for one’s own feelings and the most positive way to frame what needs to be said. Some times these professionals are helpful in facilitating especially difficult conversations, for example about the need for outside, paid help, the need for adult day care or the possibility of a nursing home.

Being informed can help the carer take advantage of available resources that might improve the care-giving experience. For example, learning how to provide care in classes that train in transfers, injections, bathing and bowel and bladder programmes are offered by some national MS societies or other organisations. Also, knowing what types of equipment, appliances or renovations are available and how to evaluate and choose them might ease physical demands of care-giving and provide the person with MS more autonomy.

MS is a disease that lasts a lifetime. The need for care seldom, if ever, is reduced over time. In order for family members to continue their caring it is essential that they take care of themselves just as well as they care for the person with MS. This includes open and honest communication with all of the family about the care-giving situation and the need for help if that arises. It is all too common that carers make sure the person with MS never misses a medical appointment, but never have their own appointment. Maintaining one’s own physical and emotional health is a key to sustaining positive caring. Carers should know when to ask for help, make sure that they have ways of keeping themselves refreshed and take advantage of the services offered through their local chapters of the MS Society, such as peer support groups or respite services.