What I wish I knew when I became a carer

What are the top tips for people starting their journey caring for a loved one living with mental illness?

SANE spoke to Jo Buchannan, a woman with almost 40 years’ experience caring for her sister, nephew and son. We asked Jo to reflect on her experiences and list five tips that would have helped her younger self in her first year of caring. Here's what she said.

Find time for yourself

Because it's a 24/7 job, you need to organise your day and put aside time for yourself. This is hard, and sometimes you cannot do it, but having a plan reminds you to look after your own wellbeing. If this only happens once or twice a week then that’s okay.

It also helps if you can arrange for another family member or a friend to help out. They can stay with the person you are caring for for a short period of time, which allows you to go to the shops, the gym, or take a walk on the beach.

If you don’t put a plan like this in place your health will suffer. You could experience burn-out or stress, and in the end you could become ill yourself. If this happens who will look after the person you love?

Get the plan in writing

Set a meeting between yourself, the person you care for and the treating professional and set a plan for if things deteriorate. This plan should be recorded in writing.

When your loved one is successfully managing their symptoms everything can seem fine, but if their medication stops working or their symptoms deteriorate the situation can change overnight. They could be suffering psychosis, or their state of mind could change completely, without a written plan it makes it harder to follow the agreed course of action.

While they're unwell and not themselves your loved one may not like the options available, your plan makes it easier to overcome these issues and you’ll know you’re making the right decisions.

Prepare for stigma

It’s not as bad as it used to be, but stigma still exists. There may be times that you will come up against somebody – friends, family or society – and their negative attitude towards mental illness. It may help to have set responses that counter some of the negative attitudes.

Be prepared that fear and ignorance can make some people cruel and insensitive. In these times all you can do is correct the prejudice and try to inform or enlighten them. But, on some occasions it may be best to turn-away from people who are continually stigmatising.

Your loved one may change

If your loved one is living with a severe mental illness be prepared that the symptoms can change their personality and they may appear to turn into another person. This is a shock. The best way to overcome this is to educate yourself as to the nature of the illness and how the symptoms can effect their personality and the way they think.

Because it’s the person you love and care for, it’s painful when they’re saying bad things to your face. You’ll feel hurt and angry. It’s important to take a step back and remind yourself that it’s the illness talking not your loved one. This is one of the hardest things to do, but it will help you immensely.

Educate yourself and connect with your peers

It’s very, very important to educate yourself on your loved one’s illness and their symptoms. Decades ago the only resource I had available was a book called ‘The Schizophrenias. Yours and Mine’, but these days you can use Google and get a lot of information about the illness your loved one is suffering.

You should also connect with people who are in a similar situation. The Carers Forum is perfect for this. I think all carers should open up and be in the company of other carers. You can say things to fellow carers about your situation that you cannot say to other people. By doing this, you will realise that you are not alone.

Jo Buchannan is a SANE Speaker with almost 40 years’ experience caring for her sister, nephew and son. You can read more about Jo in People Like Us.

More to read . . .

• The SANE Guide for Families, Friends and Carers
• Factsheets and guides regarding mental illness
• People like us

Earlier this year SANE Forums held a free webcast called ‘Being a carer and the challenges of caring’. The panellists shared their knowledge, answering questions about caring for someone with a mental illness.