“You must ring this number”

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Thank you to Dementia Australia clients Shelley and Leo for sharing their story.  

I am Leo's partner of almost 30 years. I often think of the film, 'Sliding Doors' when I think about the events that led us both to come to live in the same block of townhouses in Eastern Brisbane. The chance of us meeting in any other way was extremely remote. A few years after he retired, I became aware of him gradually withdrawing from 'life' and that he was struggling with his memory as well as showing other signs that everything was not quite as it should be.

I asked him to discuss his memory with his doctor and, he did, but in a joking way which didn't lead to the outcome I had hoped for. Eventually a close friend intervened and insisted that Leo go back to his doctor. I accompanied him this time and his doctor listened to my story. To this day he remains extremely supportive.

Leo was referred to a specialist who conducted many tests during the following weeks; medical and cognitive. The resulting diagnosis in September 2020 was, Alzheimer’s. As we were leaving the specialist's office, he gave me a phone number and said, 'You must ring this number'. When I did, I realised that the number was for Dementia Australia.

A very kind man called me quite late one night and for the next hour took me through the Dementia Australia website and talked to me about the available support and resources.

I wish I had recorded the names of the people I spoke to from Dementia Australia up to this point, but I do remember the general feeling that all these people were kind and understanding and there to help us. Leo and I ended up enrolled in a course called Living with Dementia. We both benefited from the course in different ways. Ultimately, I believe it gave me skills and strategies that led to my being far more understanding and supportive of Leo.

Following on from this I received a request to complete a Dementia Australia survey. This was probably one of the best steps I have taken thus far. At the end of the survey there was a question about how Dementia Australia could help us further. At this stage I wanted to find someone, perhaps a professional support worker, who could bring a new dimension to Leo’s life. I felt he was becoming very tired of my voice; I certainly was.

I asked if Dementia Australia was able to point me in the right direction to get this type of help.

A wonderful, wonderful lady, Julia, from Cedar House called me. I have since started to call her, 'our angel'. She talked about what Cedar House had to offer and asked that we come out to have a look through. Shortly after the opportunity arose and we went, me full of expectation and hope, Leo quite reluctantly. Julia happened to be on site and we spent a very enjoyable half hour there. All the staff were so welcoming that Leo was willing to give it a go which really surprised me.

The staff, activities and food at Cedar House have given him so much to talk to other people about. Julia has kindly sent through a photo each week and these too have prompted more conversation.

In the first three weeks of him attending Cedar House Leo has been involved with a variety of tasks, games, music and conversation.  I tried for many years to interest him in attending the local Men’s' Shed but to no avail. When I arrived at 2pm on his second day at Cedar House he had tools in hand, was working with Cameron on a project and didn't seem particularly interested in putting them down to come home.

I love our trips home as Leo talks all the way about what he has done and about the other attendees, the wonderful staff and the two small sausage dogs and birds that spend their days there.

For both of us Leo attending Cedar house one day per week has already been remarkable. He is at his best socially and the program supports and encourages this. Last week he suggested that we invite a local couple to join us for dinner. You could have knocked me over that this suggestion came from him. Yahoo!

I would definitely encourage people to reach out to Dementia Australia for help and support. I acknowledge that I haven't as much as I could have but I now feel a part of the 'family' and I can see that in the future I will reach out more. Everything about living with dementia for both parties is super daunting, including asking for help. The people at Dementia Australia are the professionals and are especially caring and supportive. They actually have some of the answers to those questions you don't feel able to ask anyone else.

We are here to help. If you need information or advice, please call the National Dementia Helpline on 1800 100 500. The Helpline is available from 8am to 8pm, Monday to Friday excluding public holidays.

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