Maree grew up watching her mum Alice lead a very busy social life with daily lunches, the phone constantly ringing and a household of visitors. But when Alice developed dementia several years ago her friends drifted away, unable to cope with or understand her changing behaviour. Maree then took over, becoming her mum’s full-time carer – a role that turned her family’s life upside down.
This is an increasingly familiar story to many Australian families, with new cases of dementia growing by over 250 each day. Balancing work, home and family life with caring for someone living with dementia can be very challenging as that care is often 24 hours a day.
Thankfully, some families are discovering that accessing respite support for a much-needed break is vital to both maintaining their own mental health and wellbeing and to allowing them to do ‘normal’ family things.
A Home Away from Home Solution
Deakin Cottage, a short stay ‘home away from home’ run by Carers ACT, seems to be the perfect solution for many carers. It is a welcoming four bedroom home providing professional and personal care for people who are ageing and/or living with dementia. It offers an alternative to a short stay in an aged care home, catering for 12 daytime and 4 overnight guests. Given the recent media stories on serious shortage of respite accommodation in aged care homes, Deakin Cottage’s availability is a welcome relief for many carers and a hidden gem in this leafy peaceful suburb.
“Looking after Mum’s been a big strain on my family,” Maree said. “We were all unprepared and thinking ‘what’s happened to our perfect world’? I also look after my husband and two teenage sons, one of whom developed a chronic illness around the time I started caring for Mum. I was also studying for a degree but had to give that up.”
Maree says Deakin Cottage has been a lifesaver for her. “Mum is really active and needs to be stimulated. I just don’t have the time and energy. But the Cottage does. It’s an amazing resource. Leaving Mum here means I can re-connect with my children and do family things again.”
Maree tried a few other places but felt none of them cared for Alice and stimulated her as much as the staff at Deakin Cottage did. “They’re incredibly tolerant and patient and go out of their way to do what’s best for each individual client. A lot of places talk about tailoring things. The Cottage staff just do it. And they make it a really happy place. When Mum gets here she just lights up.”
The other important thing for Maree is knowing that Alice also loves the Cottage and feels comfortable going there. It provides her mum with the vital social interaction she so enjoyed before her dementia. “I’ve lost my friends. Nobody rings me anymore,” Alice said. “That’s why I like coming here. There are people to talk to again. I wish I’d come earlier.”
Importance of Taking a Break
Carers ACT CEO Lisa Kelly says the residential respite Cottage is one of numerous ways the organisation supports carers to have a break. “Caring can be very rewarding but also very challenging. By booking in your partner or parent into Deakin Cottage for regular short stays – whether for the day, several days or even overnight – you can maintain your own health and wellbeing by reducing your stress and re-energising,’ she said.
“Carers are starting to realise how important it is to also take care of themselves if they want to continue to provide a high level of care and maintain a loving relationship. We provided over 18,000 hours of respite to our Cottage carers last financial year – hours that they spent attending appointments, going shopping, spending time with their family and friends and just relaxing and having ‘me’ time.”
“Our holistic approach to supporting carers ensures they have a variety of options to assist them in their caring role, whether that’s respite opportunities through the Cottage, dementia education sessions, monthly lunches where they can bring their loved one and connect with carers in the same situation, counselling and a host of relaxing and therapeutic activities,” Lisa said.
“To provide even greater flexibility in our support, we recently started offering carers the option of staying at the Cottage with their partner. Some carers need a break but don’t want to be separated from their partner. This option is the idea compromise: it allows them to stay together as a married couple and live as a married couple but with the care and the support of the staff here to do those day-to-day jobs. We’ve recently had our first couple, Chris and Pania, stay at the Cottage full time for two weeks and both thoroughly enjoyed their time here.”
“This place has been a blessing”, said Chris Lourandis, 88, a devoted carer to his wife of 62 years, Pania. “We get fed and looked after and have lovely company. They’re all wonderful people here. We can’t wait to come back”.
Realising You Need Support
Some carers, particularly those with long-term partners living with dementia, find it difficult to admit that they need some support. David, the primary carer for his wife Barbara, 81, is one such carer. “It took us a long time to convince Dad to take Mum to Deakin Cottage,” said his daughter Karen. “But now that she’s here – even one day a week – I can really see the huge difference it’s making to Dad. It gives him time to recover and do the things he can’t do when Mum’s around. Without the Cottage, I don’t know how Dad would manage.”
David’ granddaughter Caitlin agrees. “Coming to the Cottage has definitely improved the wellbeing of both my grandparents. Nanna really enjoys coming because she gets to socialise and make new friends. When we pick her up at the end of the day she thinks she’d had a fabulous day at work and loves all the people she works with. And there are not enough words for the staff. They are so welcoming and supportive and really good with Nanna, which is the important thing.”
Encouraging Life Skills
The key goal of Deakin Cottage is to assist clients with everyday living skills, socialisation and memory retention. Cottage Supervisor, Sarah Metz, says her clients love to help out with all the ‘normal’ household tasks. “They love to water the garden, feed the chickens and birds, help with the washing, fold linen, set the table, wash dishes and make the beds. They feel useful and needed,” she said. “In summer we grow our own vegetables and use the produce in our cooking. Everything’s cooked here fresh.
“We also have sing-alongs with the guitar – they all love that. Our fortnightly bus trips are also very popular. We visit places like the War Memorial, Floriade, the Zoo, Questacon, the Cotter, the Museum and the Mint. They especially love going to the National Film and Sound Archives and on the Lake Burley Griffin boat cruise,” Sarah said.
How to Access the Cottage
To book the Cottage, carers must first ring Carers ACT who then send Sarah a referral. Sarah contacts the family, works out if they’re eligible to come and, if they are, organises a detailed individual assessment and care plan. This ensures that the staff fully understand the client’s routine, personal care, medication needs, dietary requirements, cultural needs, hobbies and interests.
The family are encouraged to inspect the Cottage and have a trial day. Many ask if the facilities are similar to a nursing home and are pleasantly surprised to find it is just like a real home. While there is a fee to stay at the Cottage, subsidies may be available with a My Aged Care referral.
Making a Difference
Sarah said she and her staff could share many amazing stories about the impact the Cottage has had, from the wife who becomes the social butterfly at the Cottage, the mother who proudly teaches knitting to Cottage staff and clients, to the 48 year old younger onset dementia daughter who regularly stays at the Cottage and fondly considers it her second home. And then there’s Susie, who has joyfully rediscovered her long-lost passion and ability to sing and play the guitar thanks to the loving guidance of staff.
“But you know,” Sarah reflects, “the real special moments are when you see the people walk through that front door. As soon as they come here their eyes light up and their big smiles come out. That’s what makes our job so rewarding – knowing you’re making such a difference to someone’s life.”
For more information about Deakin Cottage please call Carers ACT on 1800 052 222 or visit carersact.org.au
Breakout Box: Dementia Resources
Carers ACT Respite Assistance: 1800 052 222
Dementia Australia Helpline: 1800 100 500
Dementia Behaviour Management Advisory Service 24 hr Helpline: 1800 699 799
My Aged Care: 1800 200 422