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Feeling under pressure

Issues that affect siblings at times when families get together to celebrate a festival or holiday are:

Focus on disabled brother or sister

  • Having to do the celebration in a way that suits their disabled brother or sister, for example, in a way more suited to child siblings rather than adult siblings.
  • Feeling that their parents will always choose their disabled son or daughter’s needs over theirs.
  • Concern about balancing their own children’s needs with the needs of their disabled brother or sister.  For many siblings their parents have never been able to prioritise the needs of their grandchildren over their disabled son or daughter.

Conflicting demands

  • Feeling guilty about having to make difficult choices of where they will spend the holiday, for example having to choose between their family and their partner.
  • Having to spend this time with their family when actually they don’t really want to. This happens to many people but in our experience siblings are placed under huge pressure to do this by their parents and by care providers.

Being a carer

  • Providing care to cover for paid staff who are on leave over the holiday period.
  • Being too tired from caring to be able to enjoy the festive activities.
  • Worry about the quality of health and social care when staffing levels are low

Stressful issues

  • Feeling worried about being blamed for antagonising their disabled brother or sister when things get tense over the holiday period
  • The challenge of choosing the right present!
  • The impact of the mental health issues, mood swings or difficult behaviour in their disabled brother or sister on the rest of the family, particularly during family gatherings.
  • The stress experienced by siblings when members of the wider family say inappropriate things because they do not understand what life is like for siblings.

Your needs matter too

  • Be clear in your own mind about what it is you want to happen over the holiday before you do anything else and write this down. This will help you stay firm and clear about your own needs. Then you can start to find ways to achieve this completely or to get the best possible compromise.
  • It is OK to do what you want during the holiday period – your needs matter! You may also have other caring responsibilities or relationships and these are important too. Prioritise who matters to you most at this time and make this the basis of your plans.  Most siblings who are parents of children and young people usually want their needs to be put first at this time of year.
  • Remember that the ways of having celebrations in a family cannot remain unchanged for ever. Remind your parents that at some stage the way their family celebrated had to change when they got married or had children – you will have your own family example of this. This is something all families have to do and it is a normal process. In the same way you want to make changes too.

Tips for coping

Discuss with family

  • Start negotiations early about where you will spend the celebrations, so that there are no assumptions that you will spend any or all of it with your disabled brother or sister and parent/s.  Planning is key.
  • Compromise can work – for example, you might spend Christmas morning with your parent and disabled brother or sister but choose to have Christmas lunch elsewhere.  A sibling who contacted us recently decided she did not want to spend Christmas with her disabled brother, but felt it was OK to have him over for New Year so that her young children could enjoy the Christmas celebrations with her undivided attention.
  • If your brother or sister has a learning disability, find some way of communicating to them about what is going to happen over the holiday.  Many people with learning disabilities don’t like change however they may cope better if they have plenty of notice about change beforehand. One sibling made a picture chart for her brother showing him where he would be spending time during the holiday and having clear pictures of the things that she felt were most important to him, such as his favourite food and DVDs.
  • If you have children, think of an activity you can do with both your children and your disabled brother or sister, that you can all enjoy – or that you find useful!

Ask others to help

  • If your disabled brother or sister has a care support package, ask for some of this to be used for them to be supported with the celebration activities by a carer.
  • Share out the work – if you are having family members to stay with you, make sure you don’t take on all the work. Share out the practical jobs and ask a family member to do something very specific with your disabled brother or sister that will ease the load.
  • Tell relatives and friends what your limitations are e.g. just tell people that this year you won’t be sending presents as you have too much on. Real friends will be fine with this.

Do it differently

  • Many festivals and holidays are celebrated over a number of days so it may be possible to find ways of having at least some of the celebration you enjoy on one day and another part on another day. This is something that hospital staff often have to do.
  • Even though festive occasions are about being with others, it can really help to spend some of the time alone – to relax, have a walk, or have a long bath.
  • In the past you may have used the wider family time together to talk about big issues. It is often better to save these until after the holidays and have these at a separate time from festivities.

Ask other siblings for ideas and mutual support on the Sibs adult sibling forum