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 tips 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 really absorb some of the things we wish we knew? 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 with our GPs when we register, connection with others in similar positions 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.
“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, 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
Firstly, acknowledge that it's ok to not be ok. When we're new to looking after a family member or friend, a lot of things can change quicker than we prepare for.
If we find ourselves having anxious thoughts about the future, Carers Coach, Suzanne, shares a helpful reflective exercise to help us manage these thoughts.
Our emotional responses to our caring situations might all be quite different, but it can help to know that however, we are feeling, we are not the only ones!
“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 for our weekly newsletter 💌 .