Coping with festivities

• 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. Many siblings often feel their parents have never been able to prioritise the needs of their grandchildren over those of their disabled son or daughter.
  

• 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/partner’s family.
• Having to spend this time with their family when 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

“Almost 10 years into my relationship, this is the first year I’ve agreed to spend Christmas away from my sister, and with my partner’s family. It was an inevitable but difficult decision. Everyone’s keen to say ‘It’s your life too’ but it’s not that simple.  Having Christmas lunch without my mum and sister won’t be easy, but I know we’ll all get through it and I’m going to try and enjoy it. The sacrifice this year means I’ll get to have them all together next year.  That will make it worth it in the end – I like imagining my sister finally having someone to talk sport with on Christmas day 😊” – Adult sibling

• 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.
• Worrying about the quality of health and social care when staffing levels are low.
  

• Worrying about how to answer if people ask about their holiday (e.g. a work colleague asking ‘How was your Christmas?’)
• Worrying 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 challenging 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.

“As a very ‘logical’ person, my autistic brother has never believed in Father Christmas, so this is something you may need to consider if younger relatives are visiting. It might be helpful to have a few counter arguments ready, to avoid any upset!!” – Adult sibling

• Large group of people meeting in a small space together.
• Worry about catching and becoming ill with a cold, flu, or coronavirus and not being able to provide care (and no one else being able to due to bank holidays).
• Fear that brother/sister will catch a virus and become seriously ill or die.
• Difference of opinion amongst close and wider family around virus-related choices such as mask wearing, distancing, being indoors or outdoors.
• Lack of understanding from non-sibling friends who don’t appreciate the ongoing and serious risks associated of being immunosuppressed.
  

Loneliness is common for siblings but can be especially heightened around festivities.

• Feelings of comparison – comparing own situation, relationships and celebrations to those of friends/family/colleagues often encourages feelings of isolation.
• Disrupted routines (e.g. usual shops being closed, public transport on different timetables, friends being away) can cut off usual sources of support for siblings that help keep them resilient.
• Caring routines may be intensified, due to lack of other carers over bank holidays creating more isolation.

Read more about adult siblings and loneliness

Siblings whose disabled brother or sister has died can find family celebrations and holidays a very difficult time.

• Feelings of sadness and grief at the loss of their disabled brother or sister.
• Wanting positive ways to remember the person.
• Loss of family traditions or roles.
• Different coping mechanisms amongst family members, e.g. some wanting to talk and remember the person, others needing to distract themselves.

Read more about sibling bereavement here

• Family get-togethers and celebrations often come once a year. Sometimes this can remind a sibling that time feels as if it is passing quickly. (‘Is it this time again already??’).
• Birthdays and anniversaries are a reminder of the ageing process. This is the case for everyone, but for siblings this can bring added worries such as ‘Who will look after my brother when I die?’ and ‘How will my sister cope as she ages and her health deteriorates?’
  

• Be clear in your own mind about what 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 usually want their children’s 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. This is something all families have to do and it is a normal process. In the same way, you want to make changes too.
  

• 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.
  

• 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 the morning with your parent and disabled brother or sister but choose to have the afternoon elsewhere.
• 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!
  

• Many siblings are used to pleasing a lot of people. If you’re making new plans for the first time, chances are, there will be someone in the family who is put out by this. They may directly or indirectly (e.g. passing comments), ask you to change your plans.
• Remind yourself that you haven’t deliberately set out to hurt or offend others. Your intentions are positive (e.g. to look after yourself, avoid burnout, enjoy the holiday etc) and you’ve clearly and calmly explained this to others.
• It can feel uncomfortable when others may be judgemental or disapproving. They are allowed their feelings of disappointment. It’s not up to you to ‘fix’ those by reversing your plans.
• You may need to ride out your own discomfort of this as you stick to your plans.
  

• 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.
• 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.
• Have a back-up plan for what happens if you don’t receive the help you ask for. For example, make it clear that you’re only able to do X and Y, and that Z will have to be left undone if there’s no one else able/willing to pick up that task.
  

Even with all the planning ahead, things can happen on the special day that make you feel angry or upset e.g. a relative asking why you haven’t visited your brother so often this year or your sister licking the icing on the cake! There are always going to be triggers in families that set off uncomfortable feelings.

• Think back to other family occasions and the type of thing that people may say or do.
• Prepare in advance some strategies for dealing with these.
• This might be anything from changing the subject to creating a diversion or to leaving the room for 10 minutes to get calm.