Dementia in my family

Looking after you

When you are raising children and have become the primary carer for a family member with dementia, it can be very difficult to cope with competing demands. You may also be working at the same time. The reality is that things might have to change. Routines might need to be adjusted to cope with increased responsibilities in caring.

As one parent told us, “When my wife’s mum had dementia, we had three kids under 12 months of age. I was already a full time Dad, and had to learn to become a full time Mum as well, so that my wife had time to care for her mum”.

Another parent described their experience of their husband developing younger onset dementia: “We have two primary school aged children, and now that my husband has dementia there are times that I feel like a single parent. I have to manage everything on my own; I don’t have that ‘team’ feeling anymore. It’s hard”.

It is very important to look after yourself. Do this by ensuring that you’re not taking too much on and by enlisting others to help. In the end, this is best for the people you’re caring for as well. Most of the time, people who are close to us want to be able to help. Often, though, they don’t know how. It’s important for you to learn to ‘manage’ your friends and family, to enable them to provide assistance in ways that will be truly helpful to you. One family member shared this example:

“I learned that people didn’t know what I needed, but they wanted to help. I learned I had to tell them point blank. I’d ring a friend and say ‘I just want to come over and vent all of my thoughts and frustrations to you for half an hour, and then change the subject. I don’t need you to do anything or try to say the right things, I just want to get things off my chest and then talk about the weather for a while. Can you do that for me?’ This way, my friends weren’t too overwhelmed by not being able to fix things.”

Give people specific tasks to do. If you know what you need, communicate this calmly to people who are close to you.

Taking care of yourself

The physical and emotional demands of caring for someone with dementia can be high. As the need for care increases, more time and energy will be required of you. It is important that you take care of yourself or these demands can wear you down.

Click here to view an Alzheimer’s Australia Help Sheet which talks about the importance of looking after yourself while you are caring for someone with dementia. It discusses some ways to manage stress and to ensure that support is there so that you can manage competing demands as best you can.

Taking a break

Taking a break is important for everyone.

Caring for someone with dementia can be physically and emotionally tiring and stressful. You can easily become isolated from friends and family, particularly if you are unable to spend a lot of time away from the person you are caring for, without support. Regular breaks mean that you can have a rest, go out, attend to business or go on a holiday. Often, you’ll have to negotiate support from the people in your life in order to make this happen.

Taking a break is important for people with dementia as it provides something to look forward to, experiences to look back on and share, and opportunities to socialise and meet other people. It also provides the opportunity to get used to other people providing support and care.

Click here to view an Alzheimer’s Australia Help Sheet which talks about the importance of taking a break, how to organise it and who can help.