the dementia carer's world
BEING AND BECOMING
BEING AND REMAINING
SOCIAL NETWORKS AND SUPPORTS
DAY TO DAY PRACTICALITIES
felt like 'a bit of a goose'
but now living well wiht dementia
I first realised something was up when I needed to write down the round of drinks when it came to my turn to shout at the pub. I remember this making me feel like a bit of goose!
In 2015, at the age 55, I was diagnosed with Alzheimer’s. My father had dementia, although it was a different kind to the one I was diagnosed with. Even so, this news came as a complete shock to me and my partner, Jan. We had no idea what the diagnosis meant. In fact, I remember thinking: ‘that was it, I was cactus’.
This fear was echoed by the doctor. He basically told me and Jan to go home and get our affairs in order.
I started looking for a GP after I got this initial diagnosis – only to find them reluctant to work with me. I approached three doctors who each
My wife, Jan, Sarah and I
said they were unable to help me – they said they were ‘at capacity’ and wouldn’t be taking on new patients for the foreseeable future. When, eventually, I was able to get in to see a GP, that didn’t actually help. There was no sign of a partnership – she just talked over the top of me.
When I took up my role as Chair for the Dementia Australia Advisory Committee, I found out that the single most common piece of feedback they receive is that GPs do not wish to see them. My advice to people who have been recently diagnosed is to shop around for a good doctor.
I eventually found a GP who is super lovely and particularly supportive. She has been happy to offer extended consultation hours to assist me. However, she is a 35 minute drive away from where I live. For me, the drive is worth it, but this should not be so difficult.
Not long after being diagnosed with dementia, I had a fall. I was wearing socks on a shiny timber floor. I was taken to hospital in an ambulance and stayed in overnight. In the morning a neurologist came in to see me, with two registrars whose presence was never explained – and nor were they introduced to me.
The neurologist said: ‘Phil, I think you need to go into full time care or have a full-time carer’.
Jan and I both burst into tears. His response was: ‘With respect, I don’t think you have any idea how difficult it is to live well with dementia’.
Instead, we fixed the floor by using textured plastic to give it more grip – and I haven’t fallen since. That was five years ago! I am living at home with my wonderful partner, Jan – and I am the chair of a national committee advising people on dementia!
In such circumstances, I just do not understand why it would not be the first port of call to give someone – at the very least – a pamphlet with more reasonable options to choose from. No one even mentioned Dementia Australia to me.
The medical world left Jan and I feeling particularly isolated. Every corner we seemed to go around we found that no one was listening.
For the first year after the initial diagnosis I was suffering from severe depression. With medication and support from my psychiatrist and my supportive GP, I was able to turn my life around. Of course, there are ongoing challenges, but I am living proof that it is possible to live well with dementia!
I was also one of the first people in Australia to have an assistance dog for dementia.
This was recommended by my psychiatrist. I had trained dogs in the past so I was open to the idea and now I have the most extraordinary relationship with Sara, my service dog.
Sara is fantastic – she helps me find things like my keys, phone, wallet and the TV remote.
As would be expected, I have times when I become quite anxious and confused. This can exacerbate the dementia and can stop me getting access to my memory. Sara seems to get this – when she knows I’m going through such times, she will nuzzle close into me, being really affectionate until she sees I have calmed. Then the confusion will lift and I can think again more clearly.
Sara has been on 56 in-cabin flights with me! She even takes her own ticket in her mouth, much to the delight of airline staff. On one flight Sara waited outside for me while I went to the bathroom. When I came out I found she had become friendly with the first class passengers. This gave me an opportunity to give those who had gathered around Sara a three minute talk about dementia! Through Sara’s presence, I find that people are more receptive to understanding the experience of dementia.
Sarah and I at a workshop
run by Dementia Reframed
I now work as an advocate for and a mentor to people with dementia. Through one program run at the University of Sydney under Professor Lee-Fay Low, I was able to receive visits at my home from people who had recently been diagnosed with dementia. I know that was a great support to them and I still keep in touch with some of them.
The first time I did one of these visits, I realised that my first and main priority was to shut up and listen for a full hour. This was extremely important – it might have been the first time they’d been listened to. It was not until they came for a second visit that I would get them into the kind of conversation in which I might offer hints – such as how to find a good GP, how to talk with one’s family, what it’s like to have an assistance dog.
I have to emphasise that, when you are communicating with someone with dementia and you’ve talked for more than three minutes, you’ve fucked up! It is so important to hear about the experiences of people with dementia – and this is an attitude sadly lacking in the way we deal with dementia today.
You know, I could be busier now than before my diagnosis! I am an enthusiastic advocate for Dementia Australia. As well as being Chair for the Dementia Australia Advisory Committee, I participate in research projects. I have provided voice-overs for the Dementia Australia Help Line, and done various interviews with major newspapers. In my previous work, I had travelled extensively presenting at Low Vision Conferences in Japan, New Zealand, US and Thailand. This gave me the confidence to talk to large audiences about dementia.
I partnered with Maggie Beer on a Dementia Special on the Sunday Night Program on Channel 7 in Sydney. At a symposium on
dementia care, Experiences of Dementia: Stories from those who Care, at the University of Sydney, I spoke on one of my favourite themes: ‘If you want to be independent, take a risk’.
My wife, Jan, often says to me, ‘Do what you can do really well and stuff the rest!’
Would you like to learn more about getting an assist dog for dementia? Phil Hazell would be happy to talk to you about his experience living with his wonderful dog, Sara. Email Phil on: firstname.lastname@example.org