Being a Carer on Christmas Day

Article by Victoria Taylor

www.caitlinswish.co.uk

It all begins in November, the twinkling lights, Christmas decorations, Christmas music blaring out of every department store …. Christmas is officially on its way.  It’s the same every year.  Now for most people it’s a joyous time and the only complication might be that you have to tolerate a family member you only see once a year on Christmas day because that’s the way you like it.  However if you are a carer then Christmas can mean so many more complications which unless you’re a carer yourself you might not even realise exist.

Anyone with children know how excited they get at Christmas time, which is only natural and all part of the magic of Christmas, however what if you have a family member who is very sensitive to noise?  This is the case in many illnesses, especially brain conditions which is what my husband suffers from.  Trying to keep a child quiet is almost impossible; after all you don’t want to spoil their Christmas yet at the same time you have to respect the needs of the person you’re caring for.  Our children were very young when my husband was diagnosed with IH (Intracranial Hypertension or Pseudo Tumor Cerebri – www.ihrfoundation.org)  they were just 6 years old and 2 years old! So how did we work around this you may wonder?  Well to be honest it’s got easier as the children have got older… but the plan starts on Christmas Eve.

As we put the stockings out for Santa we remind the children that they mustn’t be too noisy on Christmas morning because we want Daddy to be as well as he can be for Christmas day. We explain that we also wrote to Santa and we asked him to fill their stockings with presents that will keep them occupied for an hour or so, such as drawing materials, crafts, games, DVD’s, CD’s, books etc etc  (this has changed each year depending on their ages and what they like to do.)  We’ve found that this helps to focus their minds a little bit so they’re not so hyper early in the morning.

The next step is planned well before Christmas. When choosing gifts my husband will choose which ones he’d like to see the family opening! We then wrap them in different paper and put a coloured bow on them, that way when the gifts are being sorted on Christmas morning we can create a separate pile of gifts which we leave underneath the tree – the ones he wants to see us open!

On Christmas morning we get up before my husband and quietly go to see what Santa’s brought, being careful to not wake him up.
We then open about 85% of the presents. (Leaving the ones he had wrapped in different paper and a bow underneath the tree.)
When he wakes up and he is ready to open presents, we have a second stage of present giving – this means that he hasn’t been overloaded with the noise and activity but has still been part of the family opening presents.

 

It doesn’t have to be perfect to be a fantastic Christmas.

Very often we put immense pressure on ourselves trying to make everything just perfect at Christmas, which can lead to bitter disappointment if it doesn’t go perfectly.  When you’re a carer as well your life becomes very spontaneous, you don’t know how your loved one is going to be on Christmas day.  If they end up having a bad day then you simply won’t have the time to make everything perfect.  So consider talking to those family members who will join you on Christmas day… explain that YOU want to have an enjoyable Christmas too! After all you deserve it!

Explain that they shouldn’t expect too much of your loved one. If your loved one has a brain condition / brain injury as my husband does then explain that too much noise coming from different directions, too much mental stimulus will overload the brain, causing confusion, inability to think properly, panic and pain. Lots of pain!

Whatever the specific symptoms that your loved one has, explain them to your family. Your loved one will be more relaxed if they aren’t trying to put a brave face on how they really feel, not wanting to disappoint anyone’s expectations of Christmas.

Explain to the family well in advance that this is the way Christmas is going to be in your house from now on, you’re not going to try and be unrealistic.  Instead you’re going to focus on what your loved one can manage and build Christmas around that, trying not to dwell on what they can’t do anymore. (That just creates negativity with the loved one feeling sad and guilty that Christmas isn’t the way it used to be anymore.)

Explain that you are banning the
phrase “it’s not like it used to be!” They need to understand that it will never go back to the way it used to be, life has changed and so you must change with it and adapt your Christmas from now on.

Give family members an opt out option.  If they feel that they’d rather not visit on Christmas day now that things are going to be different then explain that you understand and it’s fine… they can visit some other time instead.
Make Christmas Day a more relaxed day.

Sleep – If your loved one needs to go back to bed after opening presents then that’s OK. Try to be understanding and just carry on preparing dinner while they sleep. If they need to sleep after dinner, then that’s OK too.

 

Cheat!!

If you have family joining you for Christmas day then ask them to help out – if everyone brings a tray / dish of food then it eases the burden on you! Think of the American thanksgiving dinners, where families all help out with the cooking and see if your family will adopt a similar strategy.

If you’re just cooking for your immediate family then give yourself a break! It’s not much more than a Sunday roast but everyone puts so much pressure on themselves for perfection.  If cooking a large turkey is a daunting task then why not consider buying a small turkey crown or even cooking a chicken instead?

Cheat! Buy frozen vegetables, just ready to cook.  You can even buy frozen ready made roast potatoes these days too! That way you achieve perfection without the stress involved.

 

Dinner table etiquette –

Is it really the end of the world if you don’t have every family member sitting at the table?   We’ve learned over the years that if we expect my husband to fit in with a classic Christmas day plan then it will probably end up with him feeling stressed – not wanting to let others down, and then when his illness means that he has to let them down there’s a bitter disappointment all around.

So we make Christmas day a more relaxed day.
We only have family with us who understand his condition, and the impact that has on everything. Everyone knows that he can’t always sit around a dinner table, because of the noise of different conversations happening at once which is confusing…. if it’s a good IH day yes he can, but if it’s not then he can’t.
No-one expects that anymore.
On a bad day, he goes and eats his meal on a lap tray watching TV in the living room… he is happier doing that and no-one gets stressed about it.

 

What if you’re on your own?

For some carers Christmas can be a very lonely time. I’ve described methods of handling Christmas if you’re part of a big family, but what if you’re not? What if it’s just you and the cared for person?

Some of the same strategies apply, such as don’t get stressed about making it perfect, make Christmas day a more relaxed day built around what your loved one can do, rather than dwelling on what they can’t do anymore (that just leads to feeling sad and depressed that your lives have been changed by illness.)

Try to stay positive, cheat wherever possible with the Christmas dinner – ready prepared frozen vegetables are a fantastic invention and taste delicious. What if you’re on a restricted diet such as wheat / gluten free? Well if you look in the frozen food aisles of most large supermarkets you’ll find Free From foods. DS (Dietary specials ) products are delicious and many of the supermarkets do their own versions now as well – even down to wheat free / gluten free Christmas Cake and Christmas puddings.

 

Many of the carers support organisations operate on less staff over the Christmas period which means that some carers don’t get their usual respite from their caring role, so if you know of a carer living nearby who doesn’t have a large family network supporting them, please offer your support. Even if you offer to get some groceries for them when you go grocery shopping, it can make all the difference to a carer knowing that someone cares about them! Breaking the feeling of isolation at what can be a sad time of year for some.

 

Young Carers

Many young carers in the UK look after a parent who is a single parent, which can lead to immense pressure on the Young Carer trying to make Christmas as perfect as they can for their parent and siblings whilst they are just children themselves!
If you know of a young carer, please offer them your love and support this Christmas.  In a similar way to lone carers they can find Christmas a very sad and isolating time of year. This is the article that Carers Trust wrote about Young Carers at Christmas. http://www.carers.org/press-release/no-magic-uk%E2%80%99s-young-carers-christmas

 

I hope that some of these tips have helped in some small way… we wish you all a very Merry Christmas and a Happy New Year!

Support for Carers –

Young Carers.Net  is the Carers Trust’s Young Carers advice and support forum   http://www.youngcarers.net

Carers Trust – http://www.carers.org/

Carers UK- http://www.carersuk.org/

Carers Direct – http://www.nhs.uk/carersdirect/Pages/CarersDirectHome.aspx

 

Victoria Taylor is the author of Caitlin’s Wish a book written with young carers in mind. To help them feel supported, not isolated and help them cope with their role as a carer in a positive way.

www.caitlinswish.co.uk

Facebook :  http://www.facebook.com/CaitlinsWish
Twitter :  http://twitter.com/VTaylorAuthor

 

‘Caitlin’s Christmas’ a short story for young carers will also be available for free download to subscribers of the Caitlin’s Wish Newsletter, to sign up, please visit  http://eepurl.com/sh-8z

 

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