Celebrations after brain injury can be tricky. This article is updated and reposted each year before the end of year. Timed for when Christmas, Hannukah, New Year and other celebrations abound.
It acknowledges that managing celebrations after brain injury can be difficult. Filled with expectation and anticipation – it does not always deliver on the promise.
It would be great to hear from you about your own experiences and strategies.
Managing Celebrations after Brain Injury 2015
I do not want to be accused of being the Grinch who stole Christmas, so please let me start by wishing those of you celebrating Christmas a very special time.
And for everyone I hope it is a wonderful new year.
Why am I in danger of being called the Grinch?
Well, in the middle of a major holiday celebration, I am about to suggest that birthdays, anniversaries, Christmas, and celebrations after brain injury do not always go so well together.
Expectations can be high and the reality somewhat different.
Why The Grinch?
‘How the Grinch Stole Christmas’ by Dr Seuss a children’s book, tells the story of a grouchy creature – the Grinch – who decides to disrupt and steal christmas from merry and warm-hearted ‘Whos’ in the nearby village of Whoville.
What Can Go Wrong with Celebrations after Brain Injury?
For many of us celebrations such as Christmas, New Year, are not always the peaceful, loving gathering we anticipate.
The rush of fitting everything in, family tensions, expectations not met. For people living with brain injury and their families this can be even more difficult adding to this memories of past, cognitive and other changes.
Here are just a few things that can make the combination of celebrations after brain injury less than ideal:
A Reminder of What has Been Lost
Celebrations are often a reminder of what has changed, what has been lost.
Memories of previous times pop up.
Reminders of others still living their regular lives.
The realisation that get-togethers with families and friends are different now.
A reminder of friends no longer visiting.
This is often the one that brings many of us undone; even without change or trauma in the family. We have a picture of how the celebration will be, usually with higher expectations than can realistically be achieved.
After brain injury, it is not only the perfect picture in our heads of how it will be, it is may also come with the hope (quietly inside) that this will be like earlier happier days.
On many fronts sensory overload can be an issue.
– shops and general community excitement when a religious, community celebration occurs: lights, music, lots of colour, noise.
– personal, family, or community group celebrations: multiple conversations, strangers greeting each other, requests to recall information.
A tired brain from all that anticipation, expectation, preparation and effort.
Most of us get tired during some part of a big celebration – after brain injury, the brain can become so tired it hurts.
This can then lead to other cognitive and behaviour changes being more pronounced.
Sometimes the wish and dream is that with Christmas, (or birthday, or coming home, or any celebration) the brain injury will go away and life will be as it always was.
Sadness, shock, frustration can come from the realisation that the brain injury does not go away.
At times when the whole community is celebrating life can be even more lonely that usual, if you are on your own.
Take Christmas as an example, in a community where Christmas is celebrated, there is likely to be a saturation of happy family reminders in shops, on television, in every media presentation.
These all add up to additional reminders of alone-ness and changed relationships.
Sometimes a celebration such as Christmas coincides with the anniversary of an accident, or diagnosis of brain injury. This is evermore a reminder of what has changed.
The actual date of diagnosis, or trauma event, resulting in brain injury will often be a day everyone involved will always remember.
In an article on the Brain Injury Association of Massachusetts Blog “In an Instant Your Life Can Change Forever” ‘Anniversaries: To Celebrate or Not to Celebrate?’ Guest Blogger, Kristin Olliney, writes about the impact of anniversary and celebration after brain injury, along with strategies they developed-
“Everything in our life is defined by that one day “before Isabella got sick” and “since Isabella got sick”. It is that one moment where everything changed. That first anniversary was a sad one. It was hard reliving every single moment over again.”
A time for wishing and hoping
Celebrations such as religious celebration, a person’s birthday, or a new year, can bring strong wishes for improvement, for taking away brain injury, for going back to how life used to be.
Lack of finances
With times of celebration there is often gift purchasing and giving. There may be less money to purchase the gifts and what is needed the kind of celebration that was a part of the past.
Changed behaviour can be misunderstood
Celebrations can be a time when the changes that can come with brain injury become very apparent. New people around who have not experienced the changes in behaviour. Cognitive changes such as impulsivity or less emotional control can be challenging for everyone.
Remembering or Not Remembering
Memory difficulties can mean celebrations and ritual may not be accurately remembered.
Family or religious rituals may be forgotten or incorrectly followed.
Not remembering long held celebrations can be hurtful. Remembering names and faces particularly of people not often seen who seem to expect recognition.
It’s Just plain overwhelming for everyone
A person living with brain injury has an avalanche of stuff to cope with. Family and friends have the grief and changes to manage and are often the ones sorting out solutions. There is a sense it will never be the same again.
This blog post by The Brain Fairy describes the losses felt:
“Seven years ago, in 2006, I could not face Christmas at home as I did in my past. In January of that year I had the accident that caused my TBI. By December of that year, I had not made much progress in my recovery. I could not face the Christmas decorations and products that I saw in stores already in October. ”
What Can You Do To Manage Celebrations after Brain Injury?
Here are a few simple steps that may begin to help:
- Recognise and acknowledge it is a difficult time.
- Be easy on everyone involved.
- It may be a time additional support such as counselling is needed.
- Begin to develop new rituals and ways to celebrate that are enjoyable and manageable.
- Maybe smaller gatherings over a longer period of time, shorter visits.
- Allow people to be sad and to talk about their losses. Statements like “Cheer up, this is a happy time” or “Don’t spoil it for the others” are not so helpful.
- Limit time in areas such as busy shopping centres where the sensory overload is in overdrive e.g. music, announcements, colourful displays, crowds of people.
- Encourage and allow the person with brain injury and their family to participate (or not) in gatherings at a level comfortable for them.
- Support friends and extended family to understand brain injury and the changes that happen.
- Reinforce to everyone that changes in behaviour are not deliberate: it is not personal, the changes are part of the brain injury.
- Engage friends and extended family to assist at celebrations to minimise stress on the person and their family.
- Assist where necessary with communication: repeat questions or summarise conversations if needed – taking care not to over-ride or belittle the person. This article “Brain Injury, Social Skills, and the Holidays” from BrainLine provides tips on communication and assisting in social settings.
More Strategies That Might Help Manage Celebrations After Brain Injury:
‘Christmas Changed”tells the story of one family, and the strategies they used for Christmas (that could equally be substituted for other celebrations) after their young daughter had a brain injury.
While the focus of strategies is for children many could be useful for adults as well. Including “social stories” a term I really liked for routine and structure:
“Social stories are essential in preparing Isabella for Christmas. Social stories are written to describe a particular event. They are very detailed in what will happen, how it will happen and when. Isabella doesn’t do well with the unknown or unstructured activities. Those carefree Christmas mornings have given way to a very thought out and planned one.”
“Budgeting Grief at Christmas” suggests strategies for managing the grief, changes, and lack of finances at important celebrations such as Christmas. In addition to brain injury each, or all, of these may be an issue.
Please share any experiences or strategies you have developed in the comments below.
I would like to wish you all well in whatever celebration you are having. Thank you so much for your ongoing support and readership.
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