listening goes a long way
Phil’s story, as written by Kate Guinane, details a little of Phil’s experience of living with dementia. We hear about his ability to work with dementia as he and his wife adjusted to his diagnosis and condition. We hear about how he has taken his experience of living with dementia to mentor others diagnosed and to educate people he comes across in his everyday life – his beautiful assistance dog Sarah helping to break the ice. He talks of his frustration with the medical world but, again, has used this to help others understand living with dementia and also has been involved in improving dementia support systems already in place.
the dementia carer's world
BEING AND BECOMING
BEING AND REMAINING
SOCIAL NETWORKS AND SUPPORTS
DAY TO DAY PRACTICALITIES
Experiences of the medical system
Phil first realised something was up when he found he needed to write down his friends’ drinks when it came his turn to shout the next round at the pub. In his own words this made him feel like a bit of goose.
In 2015 at the age 55 Phil was diagnosed with Alzheimer’s. While his father had had a different type of dementia the news was a complete shock to him and his partner Jan. The couple had no idea what the diagnosis meant and thought, ‘that was it, I was cactus’.
This fear was essentially confirmed by the doctor who basically told Phil and Jan to go home and get their affairs in order.
Phil and Jan then began the process of finding a GP. After the initial diagnosis he was faced with GP after GP reluctant to work with him. Three doctors that he approached were unable to help him saying
they were at capacity and would not be taking on new patients for the foreseeable future. When he was able to get into one he recalls that there was no sign of a partnership and that she just talked over the top of me.
shop around for a good doctor
In his role as Chair for the dementia Australia advisory committee, Phil says that the single most common piece of feedback they receive from those with dementia is that GP’s do not wish to see them. His advice to people who have been recently diagnosed is to shop around for a good doctor. Phil eventually found a GP who is super lovely, particularly supportive and happy to offer extended consultation hours to assist him. This doctor is however a 35 min drive away from where he lives! While for him the drive is worth it he is quick to point out that it should not be so difficult.
Not long after being diagnosed with dementia Phil fell over because he was wearing socks on a shiny timber floor. He was taken to hospital in an ambulance and stayed there overnight. In the morning he describes a neurologist coming to him with two registrars who’s presence was never explained nor were they introduced to him. The neurologist said, Phil, I think you need to go into full time care. Phil and Jan both burst into tears. Phil replied, with respect I don’t think you have any idea how it is to live well with dementia.
Five years on Phil still lives at home with his partner. They fixed the floor by using textured plastic to give it more grip and he has not fallen since. Phil cannot understand why it would not be the first port of call for doctors to give someone in circumstances like he was in at the hospital, at the very least a pamphlet with more reasonable options than full time care as the sole one to choose from. He felt frustrated that more information was not readily available, nor did much of the medical profession have knowledge that information did exist.
The medical world left Phil and his partner feeling particularly isolated. Every corner we seemed to go around we found that no one was listening.
A year after initial diagnosis suffering from severe depression and with medication and support from his psychiatrist and the GP Phil was able to turn his life around. Despite the ongoing challenges Phil is living proof that it is possible to live well with dementia.
Phil is one of the first people in Australia to have an assistance dog for dementia. This was recommended to him by his psychiatrist. Phil has trained dogs in the past so was open to the idea and has now developed an extraordinary relationship with Sarah his service dog (pictured). Sarah helps him to find things like keys, phone, wallet and TV remote.
As expected he has periods where he can become quite anxious and confused which exacerbates the symptoms of dementia and can stop him from getting access to his memory. In such times Sarah will nuzzle into Phil, giving him affection until he becomes calm and the confusion lifts, enabling him to think more clearly.
Sarah has been on 56 flights with Phil. She even takes her own ticket in her mouth much to the delight of airline staff. On one flight Sarah waited outside for Phil as he went to the bathroom. Phil came out only to find she had become friendly with first class passengers. Phil took this opportunity to give those who had gathered a three minute talk about dementia. Through Sarah’s presence people are more receptive to understanding the experience of dementia.
Phil now works as an advocate for and mentor to people with dementia through a pilot program looking at supporting those with dementia headed up by Sydney University’s Associate Professor Lee-Fay Low. In this program Phil mentors people who have recently been diagnosed with dementia in his home.
On their first visit Phil’s first and main priority is to shut up and listen for a full hour. He sees this as extremely important because it may be the first time they’ve been really listened to. It is not until they come for a second visit that Phil gets them into a conversation where he may offer hints about things like how to find a GP, how to talk with family and what it’s like to have an assistance dog. Phil stated emphatically that when dealing with someone with dementia that if you’ve ever talked for more than three minutes [to them] you’ve fucked up. With this sort of approach Phil aims to really hear about the experience of people with dementia, an attitude sadly lacking in the way we deal with dementia today, should we end with this, or should we end with the strength of Phil’s quote?