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A carer's Christmas Day

Christmas means different things to different people. Some of us spend each year getting together with family, exchanging presents and watching our favourite holiday movies on repeat. While some of us prefer to tap out of the day altogether - and that’s OK too.

Illustration of a Christmas tree with a star on top and three gifts underneath. The colours are blues, greens and pinks.

For many reasons, Christmas may be more challenging when we're caring. We might be coping with a bereavement that feels harder during the festive season.

If the person we care for has a degenerative condition, we might be experiencing anticipatory grief. Feeling a pang of loss for memories of the past and the present and future we no longer have. Or perhaps we have children that get overwhelmed by Christmas or are unable to join in.

Another pressure can be the cost of Christmas. And this year things might feel tighter than usual. Money worries could make us feel anxious and cause us to dread the holiday season.

Despite those extra challenges, many carers in our community tell us they still adore Christmas or still make the best of it. Over time, many of us have found new traditions and ways to celebrate around our caring roles. Some of us look forward to the day all year.

However we’re feeling, it can still be tough to scroll through social media and get a glimpse into everyone else’s seemingly perfect Christmases.

It can be a challenge to tune out the noise and not compare ourselves to everything else that’s going on. It's helpful to remember that comparison can be the thief of our joy. If we notice ourselves falling into this trap, there are some simple things that may help.

The key thing to remember is that Christmas needs to work for us.

Whether we spend the whole day in our pyjamas or have the entire family over - let’s make sure the day (or at least big chunks of the day!) works for us. We spoke to four members of the Mobilise community to hear how they’ll be spending the day…

Rachel’s story

It’s been a challenging year for me. I left my job in April as my brother died. My job involves working with offenders; writing sentencing proposals. I’ve done that for over 15 years. When Michael passed away, I suddenly found it too difficult to work. In April of this year, my husband was diagnosed with psychosis. We were also in a very traumatic car accident.

Michael and I had only been married for nine months when he had his first psychotic episode. Since then, I’ve been caring for him full-time. Psychosis is a really misunderstood mental health condition. The symptoms can differ from person to person. An easy way of explaining it is by likening it to dementia. Michael’s symptoms include involuntary tics. He can have outbursts of very colourful language in public. Afterwards, he’ll have no memory of anything he said. He can have prolonged periods of not talking, and his prescribed antipsychotic medication slows down his speech and cognitive function.

This year is all about us. We’re keeping the chaos and drama away. We’ll be spending two weeks on holiday in Tenerife in the run up to Christmas. We’re really looking forward to enjoying a break in the sun.

We’re driving back to our house on Christmas Eve. We haven’t invited anyone over to spend Christmas with us. I’ll likely go to my daughter’s house on Christmas morning to watch my grandson open his presents. The rest of the kids (we have eight between us) are coming over briefly on Boxing Day.

On the day itself, we’re not doing a great deal. I’m just going to relax. I’m not dealing with stress this year. I’m planning to put the slow cooker on and I’ve bought my favourite cheeses to enjoy. Right now, I’ve got no decorations up. The only tradition I have is drinking a glass of Christmas Bailey’s in the evening throughout December.

It's just going to be my husband and me this year. There’ll be lots of food, lots of music and lots of dancing around the living room. It's the first Christmas without my brother. That will be tough. I’ll light a candle and raise a glass in his name on the day.

I’m a pretty spiritual person. Despite the year I’ve had, I always strongly believed that the universe has a plan for me. I have to look on the bright side of things. Before Michael became unwell, we worked a million miles an hour; we barely saw each other. This year, we’ve spent more time together. We’ve improved our diet. We’ve gone out camping in nature. It’s been a total lifestyle change. Now we just ‘do us’, and Christmas is no different.

Dawn’s story

I care for my 16-year-old daughter, Florence, who has Down’s Syndrome. Christmas is a big family affair. As well as Florence, my husband and I have two older children. One is at university, and the other has just graduated, so Christmas is a chance for us all to get together under one roof.

We’ll spend the day with the kids and their partners, my parents, my sister, her husband and son. There’s quite a lot of us this year, which will be lovely.

Flo has been excited to open her beauty advent calendar each day in the run-up to Christmas. She’s asked for lots of surprises as her gifts, which might be a challenge. She can be brutally honest if she doesn’t like something!

I’m hosting Christmas this year, so I’ve been making lists to try and get organised. There’ll be 11 around the table for Christmas lunch, so I have lots to cook and prepare.

On Christmas eve, we go to a service at church. Afterwards, lots of people from our village head to the local pub for a drink. Then we all come back to the house and have a homemade curry. Florence also likes to go into the garden and leave some food for Father Christmas’ reindeer.

It’s about all being together as a five, which is precious to me. Especially as the children get older. Flo is more on her own with us, so it’s lovely for her to have her siblings and their partners around her. She’s excited about being with her siblings this year.

For me, the most challenging part is ensuring that Florence is included in everything. She has the propensity to want to go and watch films on her own because her taste in films is a bit different. It’s about finding activities Flo and my older kids will enjoy. Usually, in the evening, we’ll play some games and watch Christmas TV.

I want the kids to look back and think, ‘our family Christmases were brilliant. There’s so much pressure around Christmas, and it’s hard to achieve that if you’ve had a challenging year. It was harder when Flo was younger because it was bloody hard work, and I was frazzled. As time’s gone on, it feels a little easier.

Michele’s story

I’ve always cared for mum since I was a girl at school. She has various difficulties. More recently, she was treated for cancer and underwent colostomy surgery. Since she came out of hospital, she finds everything very confusing. I’m the person who finds the things she can’t. I tell her what day it is, and I try to keep her calm. I also change her dressings, manage her medical bits and help with her other day-to-day needs.

Nights are the worst. I worry that mum will fall out of bed. So I’ll sit up with the dog. I don’t mind this because I get to do all the things I can't do in the daytime. Mum sometimes gets grumpy if I do what she calls, ‘things for other people’ when I should be looking after her.

Christmas is my favourite season, even though mine bears no resemblance to the ones I see on TV. Despite that, it is the one time of the year when miracles could happen. Mine and mum’s Christmas Day is the same as any other day of the year, though I always hope that I’ll be able to call in at the local church. We don't have anyone coming over. Overnight, I’ll watch the ‘Alternative Christmas Message’ on my laptop. It makes me appreciate the things I have and feel sad for those not so fortunate.

My favourite part of Christmas is sitting at the window and listening to the bells ringing for the midnight church mass. After that, I open a present to myself - if I’ve had the time and the money to buy one. If not, I’ll look out for a gift from nature. It could be the feel of crunchy frost on the lawn or a colourful bird on the table. This Christmas, I’m hoping I can get an hour to enjoy a cup of coffee or a slice of cake, away from the chaos of everyday life.

Mike’s story

I’ve been looking after my mother for the past three-and-a-half years. She has dementia and Parkinson’s disease. At the moment, we live together. Mum can get quite worked up about having a ‘fairytale Christmas’ with all of the family. Unfortunately, it’s just us two this year. Mum’s husband passed away. The rest of our family is quite distant.

For this reason, December 25th is totally irrelevant to us. It’s just another day of the year.

I did put up our Christmas tree, though. It’s a pre-decorated one so it’s straightforward to plug in and go. And I know it will make mum happy. But that’s about all the decorating I’ll have time to do this year.

Instead of cooking, we usually go out for a meal on Christmas Day for a traditional turkey dinner. We did that last year too. When mum was more mobile, we went away and stayed in a hotel over Christmas for a change of scenery.

Making plans out of the house is good as it takes the pressure off cooking. I’ve tried to make a reservation but haven’t had much joy yet, as everywhere is booked up. If we can’t book a table, I’ll cook something easy and non-traditional.

Christmases of the past were all about getting together and playing games in the old days. I’ll try to play a game with mum to honour those Christmas memories. We might watch a spot of TV, but we won’t be doing too much different to a normal day. Mum and I aren’t particularly bothered about watching the King’s Speech.

I’m not against Christmas, but it isn’t special to me. The problem is that my mum thinks it’s significant and important. The social pressures and expectations will be on her mind from now on. She’ll get confused and ask where certain family members are, and I’m reasonably truthful. I’ll need to remind her that those plans aren’t going to happen.

Christmas means more to the older generation. Unless there are young children in the house, I can’t see its point. That being said, I’ll get mum a gift, and she’ll probably send me out to get a present for myself too.

Christmas can be a challenging time for carers as everything is closed. There’s more pressure to come up with things to entertain and amuse mum. I hope mum’s happy, though, and I’ll do what I can to try and help her to enjoy her day.

What to do if we’re struggling this Christmas

If we are struggling with our mental health this Christmas, the following tips may help:

  • Take a short digital detox: Removing ourselves from social media means we can switch off from the pressures and expectations of the season.

  • Plan something to look forward to: Look ahead to January. If we can get respite and afford it, we could book a fun activity or hobby.

  • Let go of unrealistic expectations of the day: Don’t feel guilty about not spending the day as we ‘should’. It can be refreshing to break free of the idea that Christmas needs to look and feel a certain way.

  • Set new traditions: We could find alternative ways to spend the day. Some carers use Christmas as an excuse to start a DIY or craft project.

  • Reach out for help: Speak to friends and family if we feel low. Mental health crisis service Samaritans will continue to run a 24-hour phone line over the Christmas period. If we’d prefer not to chat on the phone, we could text SHOUT to 85258 for mental health support.

Christmas looks different for everyone

At Christmas, there’s lots of pressure to feel and look happy. But as carers in our community prove, there are many different ways we can mark the day. It might be the first year we’ve found it difficult. Or we may have long-standing anxieties around the festive period.

However we feel about Christmas, the main thing is that we should try to spend the day (or at least some of it) as we would like. If we don’t feel up to celebrating, or logistically we can’t, we may feel some comfort in the knowledge that many carers are in our same shoes. And if we want to stay in our pyjamas? Well, there’s no law against it.

We'll also be hosting a Christmas Day cuppa for unpaid carers, over Zoom. Join us on zoom, on Monday 25th of December 11am and festive treats, share a cracker joke or two and connect with other carers across the UK.


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