Posted on 12/12/2018

Family caregivers: the importance of self care in a caring role

Family caregivers: the importance of self care in a caring role

Christmas is a time for family and as we approach the end of 2018, we’re looking back at all the amazing advice shared with us by real-life family caregivers, who understand the personal impact of being responsible for others, so we can continue to raise awareness of how important self-care is when taking on a caring role.

Being a carer for a loved one or a family member who has a chronic health condition or disability has a huge impact on a person’s life. We have the utmost respect for family caregivers, whether they provide daily or occasional care. We believe they need support to enable them and the people they’re caring for to live well. If you’re a carer, or you know someone that is, you know the pressures, worries and hard work that’s required. We’ve spoken to many family caregivers who have contributed to our blog throughout this year, and we’ve collated their best bits of advice about how to ensure being a carer is a positive experience.

Look after yourself

First and foremost, if you are providing any sort of care for others you need to make sure you’re looking after yourself as well. Many family caregivers find that they barely have the time or energy to look after their own basic needs, let alone do the things they enjoy. Diane cared for her husband, Mick, through his multiple sclerosis over a period of 20 years and told us:

It is very difficult to care for yourself when the pressure of being a family carer is so immense. In hindsight, I didn’t take care of myself; I felt low and tired. The hardest thing about becoming a family carer was the loss of my own life and freedom. I was so very angry that this had happened to us as a couple, a family, and to me as an individual. It’s hard to live with that anger and frustration. I found that being in control of someone’s basic bodily functions and overall health was a constant stress, and I was always worrying about Mick getting an infection, having low blood pressure, and so on.

Diane and Mick before he was diagnosed with MS

Creating a healthy balance between caring and all the other aspects of your life, plus looking after yourself, can be a challenge. Psychologists advise people experiencing stress, low mood, anxiety and other mental health difficulties to enhance their own feelings of wellbeing using the BACE method, and this can help family caregivers bring some well-needed focus to themselves.

Body: Look after your body by eating right and exercising.

Achievement: Set daily, do-able goals that you can be proud you managed to do by the end of the day i.e. chores, work projects, caring tasks, and reward yourself mentally or with a treat.

Connect: Make connections with other people (not just the person you care for) daily, be it a simple text message to a friend or a cuppa with a neighbour – even a chat with the postman counts as a positive interaction.

Enjoy: Schedule time every day when you do something you enjoy; dance in the kitchen to your favourite song, sit in the garden for five minutes, watch a TV show, flick through a magazine or go out with a friend.

Undertaking these activities physically makes our brains work differently! Exercise and having fun stimulates endorphins; feeling as though we are achieving something helps stimulate dopamine, and connecting with others helps release oxytocin. Basically, eating right, socialising, enjoying hobbies, exercising and generally finding a balance with your caring role and the other elements that make you ‘YOU’ are so important. Diane summarises it best in her advice to others:

"Take time for yourself when you can. It’s so easy to burn out and this doesn’t help you or your loved one. I wish I had looked after myself more over the years."

Read Diane and Mick’s story here.

Find out what support is available for family caregivers (and use it!)

Many family caregivers take it upon themselves to do everything and some report that they develop a sense of needing to be in control of their loved one’s wellbeing, which means it can be difficult to let other people in. It can also be difficult to ask for help when we need it, even if other people offer their assistance or support. The family caregivers we spoke to all thought that getting the right funding and outside support was crucial to being a carer and also turned out to be best for the person they were caring for. Diane said:

"Find out what is available in terms of help and funding. I would always recommend people go down the ‘personal budget’ funding route, as this gives you far more control. Be persistent and be prepared to fight for what you need. Keep hammering on those doors till the powers-that-be listen! Take all the help you can from family, friends and outside agencies"

Mick after many years of living with MS

It’s essential to find out all about carer rights, both legally, financially, and if you also have a paid job, find out your company’s policies that support family caregivers. You are entitled to have an assessment from your local authority to determine whether you are eligible for any support services, which may be services provided to the person you care for, but which will alleviate some of your tasks and responsibilities. For more information on the different types of assessments visit Carers UK.

As Diane suggests, if you have people in your life (or if the person you’re caring for does) and they offer to help, give them something to do! And if they don’t offer – pluck up the courage or let go of your pride and ask them if they would be able to help with something specific. Giving other people a role, no matter how big or small, may be appreciated by them – many people want to help but don’t know how to offer or what they could possibly help with. Emma witnessed her uncle become a full time family caregiver for her nan who had Alzheimer’s disease and she helped out where she could, but now wishes she had done more.

“On some weekends, my sister and I would take Nan out shopping, and it was during these times together that we would notice more symptoms of her Alzheimer’s, such as obsessive behaviour. As her condition worsened, and when we started our own families, we stopped taking her out, not through embarrassment (we didn’t care when she shouted at passers-by!) we just found it physically difficult to manoeuvre her in her wheelchair and bring our kids along as well.

"We also thought, ‘what’s the point?’ because she seemed so distressed to be anywhere but at home. I didn’t go to see her and my uncle as much because it was hard to see her personality and physical appearance so changed. She would sometimes shout at me and seemed aggravated. I wish now that I had kept going to see them, even if just for my uncle’s sake. I wish I’d asked him how I could help him – and forced him to take a break every now and again.”

Read Emma’s story here.

Emma and her nan

Get the right equipment

We use various types of equipment throughout every day to make our lives easier, safer and more comfortable – everything from microwaves to the humble bed are so common, we don’t give them a second thought. When it comes to family caregivers, there’s a whole host of equipment that can make their job easier, safer and more comfortable too. This equipment, known as daily living aids or sometimes ‘community equipment’, can be crucial for people who have a chronic illness or disability. Using daily living aids can not only help family caregivers, but can also help the person they’re caring for be more independent and perhaps even less reliant on their carer. Read more about what daily living aids are, and how to find them, in our blog article dedicated to this topic.

Some family caregivers may be entitled to receive certain daily living aids on loan through their local council, and they could be eligible for an assessment by an Occupational Therapist who can advise exactly what would help them in their caring role. This could include a hoist, bath lift, commode or telecare.

Telecare has been around in some form for many years – it refers to technological and electronic devices, with many functions, that help people provide care and assist with the health and wellbeing of a person. Some telecare devices are wireless and can be used around the home to help alert family caregivers if the person they’re caring for needs help. Many local councils are now funding telecare services that enable their residents to live at home more independently, by connecting them to a call centre monitoring service via a pendant alarm button. There are many stand-alone options too that can be simply plugged in to help family caregivers stay connected to a loved one who may live separately or in the same home, giving carers more freedom and peace of mind, and providing more independence for the person being cared for.

Telehealth is also an option to help monitor a person’s physical health needs, although availability through the NHS across the country is patchy, and it’s a bit of a postcode lottery. We spoke to Sarah, mum to Finley who has type 1 diabetes, about their desire for a telehealth equipment solution to help Finley manage his blood sugars and insulin:

“We want Finley to start using a Dexcom. This is a device that sends his blood glucose levels directly to his/our phone, and alerts us if they are too high or low. This would be a godsend, especially when he goes to high school as he will have less adult support. Unfortunately, this is not available on the NHS so we will have to fund it and it is expensive.”

Finley when he was admitted to hospital with critically high blood glucose levels

Get the right equipment for the person you’re caring for, as well as the right support to help you with your caring tasks, and you will likely feel much more confident, be more in control, and less likely to negatively affect your health.

Read Sarah and Finley’s story here.

Realise that, you’re doing a great job

Finally, we want all family caregivers out there to tell themselves every day that they are amazing. Just as we discussed earlier – celebrating your daily achievements and giving yourselves a pat on the back, even for a seemingly small task, is a really important way to boost wellbeing. However much time or effort goes into your role in caring for someone else, and whatever your motivation is for providing that care, you are doing a great job. You are showing that person that they matter. You’re being generous and showing love. Things may not always go to plan, and sometimes you will have a bad day when all the love in the world does not stop you snapping at the person you’re caring for, but you are only human. Give yourself a gold star every day for all that you do. And on the tough days when you may resent that person, despite their health condition or disability, remember that they value you too, even if they don’t show it. Remember that they probably didn’t choose to need you to care for them, and just like Richard who has COPD they will have bad days too:

“My family help with every aspect of daily life, including shopping, cleaning, washing etc. I have had some packages of care and I still have carers in to help with showering. COPD has changed my life in so many ways. Emotionally, I do struggle. It’s very frustrating as there is so much I want to do but can’t. Having to rely on others gets me down, although I know I am very lucky to have the support I do.”

Richard and his supportive family

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