We need to keep focusing on the person rather than the disease

Dementia Advocate Ruth, who cares for her mother Yvonne who lives with frontotemporal dementia, shares how she manages the caring role and the challenges she faces.

How would you describe your role as a carer?

Caring happens on a continuum that often starts with ad hoc support of a loved one such as taking them to appointments.

The image of a wave reflects my journey, starting with small acts of support rising to a crescendo of an intensive period of primary care and support.

Now that mum is in residential aged care I still care for her however the focus is on advocating for her and making significant decisions on her behalf.

I also provide support in practical ways such as setting up appointments, buying clothing as well as managing her financial and administrative needs.

What have been the biggest challenges of being a carer?

When mum came to live with me because she could no longer safely live at home, I packed up her house and stored what I could.

This is usually something that is done after someone passes. 

The financial strain has also been a challenge as I went from a very high-paying role to the carer's pension which was quite a shock.

What are some of the joys in being a carer?

When I tell people mum is in care with dementia they always view dementia as something to feel very sorry and sad about. 

However I always say to people that I have had the opportunity to view it differently. 

Mum's very presence with dementia gives other people an opportunity to care for her and be employed in a caring role, love her and enjoy her company. 

She is in a very good place within herself, often smiling and laughing with people which in turn brings a lot of joy to others and those who care for her. 

Rather than focusing on the disease, if we keep focusing on the person, we can often see their light and how they still make a contribution to the world they live in. 

How have others reacted to your role as a carer?

People always ask about the person you care for but rarely ask about how you are and how you are going with caring for a loved one. 

I think awareness about this has grown in the past couple of years to acknowledge carers and the work they do.

Even when asked, it can often feel unfamiliar and awkward for a carer because you become psychologically conditioned not to speak about your own needs. 

I also cared for my Dad towards the end of his life as well as a family member with a mental health condition for quite a number of years so at times having to juggle them all was really difficult. 

I think complex family arrangements where one family member is left with the role of caring is little understood or acknowledged. 

How do you balance sharing your experience as a carer while also respecting the privacy and dignity of your mum?

I feel it's a balancing act between sharing things about your life while also not mentioning the things that maybe a loved one doesn't want others to know. 

Sharing aspects of your life and caring role with family is very different to sharing it with friends or a wider audience. 

The challenge is when you want to share an aspect of the realities you face as a carer – to help and connect with others – but it would be something your loved one wouldn't want others to know.

I don't think I have resolved the intricacies of that yet. 

What are some of the ways in which family and friends have supported you and your mother?

I had a friend who was a qualified aged care provider and got on with mum famously.

It was great to be able to employ him to take mum out so that I could get other things done around the house. 

My family and friends offered more moral than practical support.

How would you like others to have supported you?

I would have loved people to drop in the occasional meal, take mum out and help with the practical everyday reality of caring for mum. 

I remember one night when I was sick and there was no-one I could call on to help. 

Mum still needed to be fed and put to bed, the dog still needed to be cared for and I also needed to try and look after myself but you just have to keep going. 
 
The lack of support and loneliness some carers endure is quite heartbreaking.

Your mother now lives in residential aged care. How has your role as carer changed?

I am still mum's primary decision-maker so I can get calls at any time of the day or night regarding her care – anything from medication queries, reporting of incidents to asking for information to support a care plan review. 

Sometimes phone calls come in late in the evening so I still often fear the worst, even though it might be a simple request.

It's like I am on call.
 

Further support and information

Thank you to Dementia Australia Dementia Advocate Ruth for sharing her story.

You can find out more about the Dementia Advocates Program on our website.

If you would like support, advice or information about any type of dementia-related issue, including supporting a person living with dementia, contact the National Dementia Helpline. 

The National Dementia Helpline is available 24 hours a day, seven days a week, 365 days a year on 1800 100 500 or via our live chat.