Quality of life of people severely affected by MS

People who are severely affected by MS, often say that their quality of life is compromised significantly. Families, carers and friends can also find that stresses and frustrations increase. This can however be minimized if everyone makes an effort to ensure that quality of life is maintained for all.

Having a good quality of life is important for everyone. However, people often say that when they are dependant on others for care, life becomes increasingly isolated and hobbies and interests are sidelined. This need not be the case. It is important that social networks and interests are maintained. People may also find new interests and social networks are developed that better suit their changing lifestyle. These may be different to when a person was less affected by MS, though they can still be tailored to personal tastes and interests.

For example, if you once enjoyed reading and now find it tiring and difficult to turn pages, you may wish to listen to audio books. You may also find that some friends also enjoy reading and that you can arrange a book club where you can discuss books you have all read and enjoyed. Perhaps this could be done at your home, at a specially arranged time, or over the phone. Alternatively, a film or music club could be arranged where you watch videos or DVDs together with friends and can discuss them afterwards. Others find that there are whole new areas of interest they can explore. For example, today there are many adaptations that can be made to computers and other assistive technologies that can help make hobbies easier – independent living centres and other independent living organisations like AbilityNet and the ITCH Network can advise.

You may also find days out enjoyable. While this may require much practical planning, there are sometimes local organisations that offer such activities and give both you and your carer a break. Day care centres also often provide activities, as well as opening up new social networks, while also providing care on site. Your local MS Society branch should be able to advise on what is available in your area.

Being cared for can also impact upon relationships with partners, children and friends, as the dynamics change. This often occurs as you become more dependent on those you are close to for support. And, in marriages people sometimes say that these changing dynamics can make it hard to maintain a romantic relationship. Parents also sometimes find it hard when they turn to their children for help in meeting daily needs. For all these reasons it is important to make sure everyone is getting the support they need from all external services possible. If necessary, ask for your care plan to be reviewed and remember these services are an entitlement – not a favour.

Looking after your social life can also keep you connected to relationships outside your immediate family and carers, as well as helping to prevent feelings of isolation and depression.  

Carers' quality of life

Carers' quality of life also matters. While many family members and friends find it easy to adjust to caring, others find the responsibility produces some physical stresses and emotional strains. Physical stresses may result from helping to transfer the person cared for, looking after intimate daily needs and lack of sleep. Emotional strains can result from the changing relationships and the sorrow of watching a loved one loose physical and emotional ability.

On top of the responsibilities of caring, there are additional day-to-day tasks, and possibly full or part-time employment. This can all result in carers feeling like there is little time left for other family members, seeing friends or participating in other social activities and hobbies. This can be frustrating and often leaves carers feeling like there is little time to re-energise. It is therefore important carers have all the support available and are encouraged to look after themselves too. Carers’ well-being will depend on good physical and emotional health. Hobbies, social activities and getting a break from caring tasks are all important in maintaining quality of life. Some carers find they can get a break whilst external help is available from either health or social services. Alternatively, time spent at a local day care facility can give carers time to catch up on other routine tasks. Others find longer breaks provided by respite care invaluable. See the carers' section in our Free Publications list for booklets that provide more information.  

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