For our 100th Mobilise Moment* we were keen to capture the wisdom, knowledge and experience of our community. We asked
“What do you wish you had known in your first 100 days of caring?”
For those of us who have been caring for a while, it's likely much of the below will strike a chord. We may even have received some of this advice ourselves. But did we listen? Were we able to take it in and act on it?
So perhaps the real question is 'what would have made us really listen and act'?
How can we help new carers to really absorb this valuable advice? And hopefully avoid the mistake made by Alanis Morissette:
"Some good advice that you just didn't take" - Alanis Morissette
Top five things we wish we had known when we started caring
1. Identify as a carer
So many of us struggle with the label of ‘carer’. But at some point we realise that the 'label' opens up support, connection and awareness. Both within ourselves and in our community.
“I wish I’d seen myself as a carer from the point my husband was diagnosed. That was when I had time to think through how we were going to do this.”
“.....caring can creep up on you. After 10 years living with hubbies illness (Parkinson’s) things have crept up on us over the last 2 years to what is now a full time caring role for me”
“Life is better if I admit I'm a carer and tell people, including the person I'm caring for”
“That I was a carer! Most people don’t become carers overnight and coming to terms with it can take time.”
2. Ask for help and support
Of course this makes sense, we all think we’ll do this when the time comes. Then slowly we get used to doing things ourselves. If we are not careful our support network shrinks and finding help can get harder. Sharing the responsibility for caring with others (such as family or friends) from the beginning and connecting with carers centres and benefits advisors were mentioned as well. Along with a healthy cheer from the Mobilise community.
“That I don’t need to do everything myself. Help is out there.”
“Just that there are people out there that can help don’t be afraid to ask for it, even if you feel embarrassed like I was but I was glad I asked
“The benefit of contacting the local authority to discuss the situation and ask about support.”
“Ask for help when needed. Know your rights.”
“That there were people out there who can help and support carers”
“That when I needed help I could ask for it instead of doing it all by myself”
“Accept advice or help when offered ! Don’t battle on thinking you can cope , you need all the help you can get!”
3. Take time to be you
Big decisions like leaving work and moving home can change our lives so quickly. Other things that are important to us can disappear so slowly that we don’t always notice until we look back. Keeping hold of who we are and making time for things that are important to us really matters. A chat with our support team could help us identify what's important to us, and how we can carve some space in our lives.
“That I could still be myself, and not just my mother’s carer.”
“I wish someone had told to make time for myself outside of my caring role”
“I jumped to the conclusion that my career would end in a few years. If I’d chatted to people further along I might have thought this through more.”
4. Look after yourself
If this was easy to do we’d all be doing it right? For many of this really only makes sense when we hit a wall. We’ve heard people say “you can’t pour from an empty cup”. The concepts of self-care and wellbeing can feel like something other people do. When we listen to other carers though we know this will be one of the most important things we do.
“...look after your own health and well being...a lot easier said than done.”
“I wish I had known to pace myself”
“To look after myself. To acknowledge my own emotions. To accept help.”
“Looking after yourself is key to be able to look after someone else to the best of your ability. Eating healthily, taking exercise and having some me time ensures you’re in the best frame of mind to cope….”
“Although being told to make time for me is paramount it’s not always easy especially in those early days but it's the most important thing to look after yourself”
5. It’s ok to not be ok
Our emotional response to our caring situations might all be quite different, but it can help to know however we are feeling we are not the only ones! And on those bad days, our community and our free support calls are there for us.
“That it's OK to have bad days and that bad days don't make you a failure.”
“What 'carers guilt' is and how to manage it.”
“How tiring it could be”
“It’s okay to feel overwhelmed so don’t feel guilty about needing support for yourself ”
“That the bad times pass”
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*Mobilise Moments is our wellbeing check in for unpaid carers. You can join us by signing up to our emails below.