Our research involved in-depth interviews with 25 relatives from 21 families. The interviews explored experiences of supporting a family member with progressive MS and the transition to respite or long-stay care. Unsurprisingly these very personal stories were all-embracing, covering issues that often dated back to the initial diagnosis.
Four main themes appeared:
Information, communication and understanding
This was a huge issue for family members. As relatives often missed out on key appointments their chances to learn about the condition from health professionals were more limited than for the person with MS.
The amount of information people had about MS varied greatly, even within the same family. Often it was the children of parents with MS who gained the least information, especially if there was a 'family culture' of not talking about difficult subjects. This led to family members either not being prepared for the changes in MS over time, or living with the unrealistic fears that their loved one might die at any moment.
Information from professionals was inconsistent, leading to an incomplete understanding of MS, for instance thinking that it is only a physical illness. This made it harder to cope when faced with cognitive symptoms or personality changes.
Fortunately a lot of information is now available on the internet. Of course, information does not automatically translate into understanding and the key message was that good and honest discussion of the issues was essential, within the family and with professionals.
Research in mental health and cancer shows that families are better able to cope when they have a more accurate understanding and realistic expectations of disease progression. Without this, relatives are not prepared for changes or deterioration in the illness and do not know who to ask for help. All too often a crisis is reached before professional intervention happens.
Husband: More information, and certainly more support along the journey... you're proud and you try and cope, but it does takes its toll.
Family relationships, roles and responsibilities
The effects of MS can stretch over many years but because people will do whatever is needed to keep things going its impact on family relationships may go unnoticed until things reach crisis point.
Relationships within some families in our study underwent substantial changes and relatives struggled to deal with a family member with MS whose beliefs, outlook and behaviour significantly altered. They could become very self focused, aggressive, or be unable to relate to others as they once did. Some relatives did not share positive aspects of their own lives to avoid drawing attention to things the person with MS could no longer do, stirring up feelings of deep rooted, unjustified guilt. Alternatively, some people with MS lived 'through' other family members, which also posed relationship challenges.
Sometimes, relatives took on the role of 'main carer' themselves for the wrong reasons or because of financial constraints that meant they had no choice. As relatives did not always easily identify with the term 'carer', they didn't access what little carer support there is. Some siblings and children carried out a greater number of family responsibilities than their peers. These situations could create enormous challenges for relationships, but could also bring some families closer together.
Wife: I'm still his wife, but I feel much more his carer than his wife. He feels that sometimes too but it's just what's happened, isn't it?
Some families had a system of paid carers coming into the home. While the routine of fixed appointments at unsociable times could become an intrusion on family life, some relatives reported organisations that do offer more flexible systems and this is something that families should advocate - reliable care available at short-notice.
If the person with MS moved into a residential home, some relatives found it difficult to move from being in charge of caring to being seen as a 'visitor'. 'Family members observed that while initially they wanted to visit care establishments every day, this was difficult to maintain and devising a visiting rota can be one method for sharing the responsibility of visiting.
It is very important that professionals work with relatives to ensure they are able to take 'time out' from caring, and that they are aware of the provision of respite before they need it and in enough time to allow everyone to adjust to the feelings of temporary separation.
Emotions, coping and support
The impact of MS could be felt by every member of the family. Many difficult emotions were experienced - guilt, frustration, relief, 'utter sadness', loss, despair, empathetic pain. Relatives reported that at times, as a family and as individuals, they were in great need of support in coping with the complex array of emotions, but also reflected that had they known what was available, they would have found it very difficult to accept.
Daughter: If I was there I thought I should be here, if I was here I should be there, you were always pulled. Guilt is a big part of things.
Several family members expressed sadness and frustration when friends drifted away or did not show understanding of their situation. However some families chose to keep the reality of their situation private for various reasons, especially when things were particularly difficult.
Some relatives reported that cognitive behavioural therapy (CBT) had helped them to balance self-care and caring for a loved one, but it was important to find a therapist who has some understanding of MS. CBT is a psychological approach that focuses attention on the link between emotions, thoughts and behaviour. It encourages the development of 'healthy' thinking patterns and realistic and practical daily routines.
There was a mixed reaction to support groups. The majority of relatives thought little benefit could be gained from them and several also commented that they were unsure what type of support would have helped. MS nurses were seen as being a phenomenal support, but relatives often wished they had found out about them at a much earlier stage.
Son: There are things that you want to get off your chest but, like I said, I just had to deal with it in my head and let it go
Life outlook and reflection
Many people shared profound reflections on the impact of caring for someone with MS and how it had altered aspects of their character (more compassionate, less tolerant of others, etc), and their approach to life (parenting/grandparenting styles, appreciation of the valuable 'small things'). Several felt they had to rebuild areas of their lives, yet reflected that from their experiences they had gained rich insights into life.
This research shows that there needs to be a much greater awareness of the impact of MS and the ongoing challenges faced by families. Services need to be adaptable to provide a more family-centred approach. It is all too easy for struggling families to fall through the net because they do no shout loudly enough for support.
We wish to thank
- All the relatives and families who took part in our study for the privilege of sharing a small part of their journey
- Professor Graham Beaumont, Head of Clinical Psychology, Royal Hospital for Neuro-disability, for valuable time, guidance and assistance
- The MS Trust for funding this study
Written by Dr Ceri Bowen, International Research Fellow, and Anna MacLohose, Research Psychologist, Royal Hospital for Neuro-disability, London for Open Door - August 2009