17 June 2021
Becoming a carer for someone in your family is not something you generally plan for. Whether a parent’s health suddenly deteriorates, through accident or disability, or you give birth to a child with additional needs, being new to a caring role can be scary and is often something you need to learn quickly.
One of the most important things to remember is that, although you’re facing a new reality, you are not alone. In this guide, we’ll point you towards the growing community of carers online who you can connect with and gain advice. We’ll also highlight a number of charities which can help guide you through the new journey you’ll be taking with your family member and provide information on the support you are lawfully entitled to receive under The Care Act 2014.
There are numerous blogs and social communities online which have been set-up by others who have found themselves taking on a caring role for a family member. These blogs and digital spaces offer a safe place for carers to share their experiences and can help provide a clearer insight into how daily life may change for you.
Some difficulties many other family carers face - how many of these can you relate to?
Carers UK is the main membership charity in the United Kingdom for carers. They have compiled a range of advice for first-time carers, from carers. Two of our favourite quotes are from Rachel and Claire:
Nothing quite prepares you for the first time you have to sit your mum or dad on the toilet because they are unable to do it themselves, or that moment a family member forgets who you are due to a memory condition like dementia.
Personal care is usually one of the trickiest tasks to negotiate – especially if you’re an adult child taking care of one, or both, of your parents. If you’re worried about how to approach bathing or toileting routines at the start of your caring journey, we have a few suggestions which may help to make things a little easier.
You may be caring for a family member who has been diagnosed with a memory condition such as dementia or Alzheimer’s disease. These conditions can present their own awkward moments as behaviour may suddenly become out of character, erratic, or even violent. It can be very difficult for family carers to see the ones they love change so drastically – especially in the later stages of the condition when confusion may lead to the person with dementia or Alzheimer’s forgetting who their family carer actually is.
Alzheimers UK have some great tips for communicating with someone with dementia including what to do before speaking, how to word things, when to listen, and how your body language can affect the conversation.
Receiving news that a family member’s health condition is terminal is one of the hardest situations to come to terms with, but it is important to make the most of the time you have with the person you’re caring for.
If your family member still has full control of their mind, and is able to make sound decisions, it’s vital you speak to them about putting their affairs in order. This is especially important if they have been diagnosed as being in the early stages of dementia or Alzheimer’s as their condition will deteriorate over time.
We spoke to a lovely lady called Val, who looked after her Mum with Alzheimer’s during the last years of her life, and she left us in no doubt as to how important it was to put financial affairs, in particular, in order.
Dying Matters shares comprehensive information and advice about death and dying. Visit their website.
There is an abundance of information and support online for carers. Whether you want to talk to a professional on the phone, chat with someone through a forum or just find out more information about caring for a loved one, there are sites dedicated to helping you.
Carers Trust works to improve support, services, and recognition for anyone living with the challenges of caring (unpaid) for a family member or friend who is ill, frail, disabled or has mental health or addiction problems.
Carers UK is the main membership charity in the UK for carers. They have a dedicated “Help and advice” section, which shares the stories of a wide range of carers, as well as advice from professionals and interviews with experts. This makes it an ideal place for advice and information if you’re a first-time carer.
One feature which particularly caught our attention is a short, humorous survival guide written by a lady called Gillie, who shares her top tips to help other carers cope in their caring roles, including:
If you're providing unpaid care for someone who couldn’t get by without you, please visit Carer services near you - Carers Trust to find support in your local area.
Alzheimer’s Society address the feelings of guilt when caring for somebody with dementia. Many carers can feel like they are not helping enough or struggle to accept support from others. They may also get frustrated and wish for time away, and later feel guilty about these feelings. Alzheimer’s Society offer a few ways to manage these emotions, such as:
If you feel angry and frustrated, you might occasionally have angry outbursts towards the person you’re caring for. Many carers find it hard to forgive themselves in this situation. Try to remember that caring can be very stressful, and anger or frustration are natural. At times when you do find yourself becoming angry or frustrated, it can help to leave the room for a while to allow things to settle.
Meeting up with other carers at support groups or reading about other people’s experiences might make you think other carers are coping better than you are. But remember, there’s no such thing as the ‘perfect carer’, and it’s important not to be too hard on yourself. Are you being realistic about what you can achieve? If not, can you reduce any of the expectations you have of yourself, or get any more help?
If you have a child with additional needs, the Scope website is a great place for information and advice. They have a dedicated section for families with disabled children, where parents and guardians can go to find out more about the journey to diagnosis, how to get educational support for your child and where to find emotional support if you feel overwhelmed.
The “Include” service offers support to children and young people who care for parents, siblings or others living with a chronic illness or disability. You can use the interactive map to find young carer’s projects available in your local area or explore the website further to find guidance on education, finances, mental health advice and more.
The Care Act 2014 came into effect on 1 April 2015 to strengthen the rights and recognition of carers in the social care system. Under the Care Act 2014, carers and the people they care for are entitled to an assessment of their needs – regardless of their income and finances or their level of need. This assessment is essential for determining how a carer is eligible for support from their local authority to ensure that they can continue with going to work or caring for children or other adults with disabilities that they may already care for.
The online carer community is growing year on year, not surprising when you consider that 6000 people around the world start caring every single day.
We’ve found a number of blogs you may find useful when starting your journey as a first-time family carer and some Twitter accounts to follow from other carers.
On Twitter
We’ve looked into some of the most popular and helpful blogs written by carers to give you a starting point of where to find the best advice online.
Whether you’re caring for an older relative with a memory condition like dementia, looking after a family member with a terminal illness such as cancer, or you have a child that requires additional needs, the following blogs are a great resource for finding inspiration and discovering unique ways to help care for those you love in a respectful and dignified manner.
Beth Britton was a carer for her father, who lived with vascular dementia for almost 20 years, until he passed away in 2012. She launched her blog, D4Dementia, to reach out and offer support to others who were living in similar caring situations. Beth is now a campaigner, writer and consultant focusing on dementia and broader health and social care.
On her blog Beth answered the most frequent questions she is asked by carers, including, “does everyone feel they can’t cope?”. This is a fragment of her response:
Losing a Puzzle Piece is a blog written by two sisters, who lost their older sister, Colleen, to cancer in 2015. They have shared their story of caregiving as young adults, and as siblings, in the hope they can reach out and help others who are caring for a loved one. Their blog contains a wealth of information and resources, as well as personal caring advice. On their blog, the sisters created A Caregivers "To Don't" List, as a contrast to all the “to do” lists that carers often struggle to find the time for.
Whilst there is a lot of advice for carers online, advice for carer’s friends and family is a little rarer. The sisters put together a few things that friends can do to help reduce their caring friend’s workload or give them time to relax. Helping them in other areas of their life, including looking after their children, walking their dog, or doing the food shop are simple but effective ways to help. They also suggest small care packages for friends who live further away or funny cards to make them laugh.
Olivia is a young woman from Cornwall who has had a caring role for her mother since the age of 8. Her mother was diagnosed with Multiple Sclerosis at the age of thirty-five, and at the time was a single parent of three children. When she was fourteen, Olivia set up her own blog, called The Odd Pigeon, to raise awareness for other young people who were caring for their family members.
In her blog posts, Olivia tries to reassure young carers that it’s OK to make mistakes – here’s an excerpt from one of her posts called “Three things”
It’s important to remember that you are not alone. There is support available to help you navigate through your caring journey. Here at Healthcare Pro, we are with you every step of the way with the advice, support, and daily living aids you need to help look after the ones you love.
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