Coping with festivities
For many people holidays and festivals are a time for celebrating, enjoying time with family, and having a well earned rest from work. For others it can be lonely, hard work, and very stressful having to spend time with family members. For siblings of disabled people it can also be both of these. Many siblings tell us they find it difficult to meet the needs of everyone in their family, as well as their own needs.
The most important thing to remember is that you come first. Many adult siblings have spent a lifetime with their needs coming second (or third, or fourth…) to the needs of another. It’s OK to celebrate a holiday or festival in the way that you want and need to.
Things that can be difficult for adult siblings
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. 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
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.
- 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
Worry about coronavirus
- Large group of people meeting in a small space together.
- Worry about catching and becoming ill from 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 coronavirus and become seriously ill or die.
- Difference of opinion amongst close and wider family around coronavirus related choices such as mask wearing, social distancing, being indoors or outdoors.
- Lack of understanding from non-sibling friends.
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
Being reminded of the passing of time
- 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?’
Sibling Annaliese Quinn remembers her disabled brother and sister, Jordie and Jack, with Spotify at Christmas: “I suggested we create a collaborative family playlist of all their songs. And it really brought everyone together to remember the good times. It’s never too late to make a new tradition!”. Read Annaliese’s blog post and find the link to the playlist here.
Tips for coping
Your needs matter
- 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.
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.
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 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!
Accept that some people won't like your plans
- 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.
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.
- 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.
Plan for how to react on the day
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.
“Growing up, Christmas day was always a bit of a minefield. The house was generally more chaotic with extra family members and decorations, which is not always agreeable with a profoundly autistic sibling. Also the extra food in the house meant that my brother had more temptations for mischief (food being one of his very favourite things, mine too actually). My brother wasn’t expected to sit with us at the table, but he always ate at the same time and had plenty of helpings. One year, when my dad had just put the turkey on the table and had returned to the kitchen to fetch the carving knife, my brother emerged from his bedroom (the door to his room was in the dining room). He looked expectantly at the spread on the table, and my mum started to pile sausages and potatoes onto his plate. Quick as a flash, he grabbed the turkey with both hands and gleefully rushed off to his room, trailing grease and juices behind him. My dad managed to get the bird back to the table, minus a leg and most of the skin. We haven’t had a turkey since! As although chicken is technically easier to steal, it seems like less of a risk.” – Adult sibling
Further support and advice
- Meet other siblings who just ‘get’ what sibling life is like at one of our friendly support groups
- The East London adult sibling support group have put together their tips on setting boundaries as a sibling
- Read our advice on coping with feelings
- Find out more about how to find a counsellor
- Download our eBook ‘Self-care for siblings’
“Being rather cut off from our extended family made it easy to always just celebrate everything as the three of us- me, Mum and my brother. In recent years, our struggles and discoveries have brought us closer together and made us more forgiving and less willing to do things as they ‘should’ be done. We now all agree in advance together how to help my brother cope with whatever the event is, but plan with enough flexibility that it can be altered if needed. It’s important that there are a few laughs on the day and that everyone can say something positive about it, however small. Using this method we successfully stayed in a hotel to attend the Labour Party Conference and ensured that celebrations can be as low-key as necessary.” – Adult sibling
I need urgent mental health support
- To talk about anything that is troubling you, call Samaritans on 116 123 any time of day or night or email email@example.com
- Prefer to text? Use the ‘Give us a shout’ text service. Text ‘Shout’ to 85258 to talk about your feelings, at any time of day or night
- CALM (for men). Phone line 0800 58 58 58, open 5pm – midnight. Webchat service here
Sibs would like to thank all the adult siblings on our reader panel who generously shared their time and experiences to help develop this page. Interested in joining our reader panel? Click here to find out more.