If I were to tell you my story I would tell you it almost as a PowerPoint presentation. Because it gives you pictures of what my life has been like since my diagnosis. My mother was the first person and it's the image that you see on the PowerPoint in the first instance. And she was the person who said to me Sarah there's something wrong. And this was about 6 months before she died. And I was saying mum I'm looking after you I'm working full time I'm doing this, I'm doing that give me a break. No there is something wrong with you you need to see about your memory. And I think she knew in her own heart of hearts that I had dementia but she didn't want to be the one to tell me but she was insistent that I see somebody about it. Within probably three months of her death was when we started to get the diagnosis that would come to be what became my new lived experience of dementia. Just after her death I ended up in hospital. God knows what number occasion probably 30 or 40th but it was about the 8th or 9th brain surgery I had to have in July of 2013. Had the surgery, three weeks later I'm back having it again. I had taken down paperwork to read, and anyway when I took it down I found I couldn't remember it. And I was always the sort of person who was able to read reports, take them in, do all of those things, and here was I not able to remember what I had read the page before. So I decided to get some testing done, neuro psych testing really, done to see what my memory was like. And they came back and they said you'll never work again. And I'll explain to you in a minute what my job was like so you can understand what implications that had in my life. But they said your deterioration is such, in a 12 month period, that you won't be able to return to your former employment. And as it turned out I never did. I used to describe myself as having the memory of a gold fish, until I found out a gold fish could remember for about two weeks. Now I describe it as being more that of a fruit fly which remembers for about 27 seconds. Then I started to find that I couldn't comprehend things as I used to. I used to have what I call very good big picture skills. You know, I was able to work through things, create macro views of things very quickly and suddenly I couldn't do it anymore it was like the light was on but no one was home. I couldn't plan anything, you know I couldn't work my way out of a paper bag with directions going upwards. It was just hopeless my planning, Other things fell off, my speech I started I started to run into problems with my speech. So I was like that thingamebig uh, now what was that? And I couldn't remember the words. It took me to go to another group, and they walked me through it and that group was Dementia Australia, and they looked at everything I had in the way of paperwork and they said, Ok you need to get back to your neurologist, because we think you've got the symptoms of early onset dementia, and to set the picture of how they told me, they handed me a piece of paper, it was folded down at the top, and they said now, have a look at those 10 points and tell us what you think, and they were the symptoms of dementia and I looked down the list and I said oh yeh they're all me. Yes we think they are too. Now we want you to unfold the top, and as I unfolded the top, it was like this fire ball immediately consumed the room, because the words I was reading was early onset dementia. And so my brain, you know suddenly my past, is going up in flames. That door of knowledge, which is you know, this is what we think is wrong with you is being opened, and my future is about to be incinerated. You know the way you begin to worry about your life is that you're going to end up going to a place that you don't know how to get back from. And that's what I felt about dementia, that I would go somewhere that I didn't know where I was and I didn't know how to get back from it. And it quite honestly, I would say for the better part of two years, that diagnosis destroyed me. I was 56 or so at the time. I had been a worker all my life. I had worked for over 40 years in health, I had worked my way up through the system I had trained as a Registered Nurse at Royal North Shore, I had been involved in nursing for many years. I'd gone on and done my bachelor's, my master's degree, all of those things, started out working as a Registered Nurse in Surgery, Short Stay Theatres, did Emergency work. Did a whole range of areas that I covered. Then I went into Nursing Management, such as I was the manager of the Rehab Unit, at St George hospital, and then I went to Administration and I worked in doing Aged Care and Mental Health, and Radiology I was the Nursing and Patient Services Manager for that. Then I became the Business Manager for Nursing and finally I ended up here on the North Coast as the, initially as the Executive Officer of Kempsey District Hospital, and then I took on several Area roles, at the Mid North Coast Area Health Service office based out of Port Macquarie. And at the end of my time the workload that I had was thus: I did Risk Management, I did Quality Management, I did Accreditation, I did Legislative Compliance and I did Patient Consumer Advocacy. So mine was quite a broad base comprehensive role, that I was trying to keep on top of. And if you can imagine at the time this all blew up, my mum was also very ill and in fact died in May of that year 2013. So here you've got this fairly high powered person and you're turning around and saying to them well, that's all well and good but we now think you've got dementia. And that was, that ended up with me virtually curling up in a ball for 18 months. And I went from denial, to raging anger to finally to a bit of self-limiting acceptance, I had to learn to come to terms with it if I was ever going to cope with it. The jump from working full time, to not working at all was sharp and short. But really it was a big jump it was like jumping off a cliff, and I think that's something where we have the opportunity as an industry to say well, if we do have staff and I won't be the only one, that's ever diagnosed with dementia, how are we going to support them through the transition so that this isn't as brutal for them as I felt it was for me? I mean I'm a Nurse so I understand dementia, but it's not an easy diagnosis, you know what, you have in your mind what people with dementia are like they're gaga, they're this, they're that. And I had these images in my head, and I was terrified of them. As it turned out I decided to sell my home, That’s perhaps something you’d probably need to rethink, if you’ve been given a diagnosis. Do you turn around and sell your home? And do all the things, pack a home up, unpack a home, did it all on my own. But did it after my diagnosis. I got into gardening I became involved with Dementia Australia, I worked on a lot of committees there with them, I still sit on the National Advisory Committee. I got involved with committees in Mid North Coast Health because I wanted to be able to contribute to the organisation I’d worked with for so many years. I still had good working relations with the people there and I’m involved with Lions and I provide, where I can I do service support for them and for example the Lions do the garden club up at the hospital every Wednesday. We fix up the GEM Unit garden up there on a Wednesday, that's important for us to be able to do. And I have my pets, there are several birds, two dogs Bonnie and Clive. I've got my pets to keep me interested, and I have my garden as you see here. It's a big part of my life. One of the things that I always say about dementia is that it is functionally exhausting, you will be alright one day and next day and next day you're flat on the floor. Right, and I say to my support worker I can't think, I can't think today. And I don't know why it goes that way but it does. I think keeping your friends your neighbours and anybody you deal with on a daily basis, with whom you have interactions like the Lions group of people or whoever to say to them look, I'm not having a good day today is very important. because if you don't tell them they don't know, so you have to tell them. and then they can compensate, because they've heard your story they know how things can go for you and they can help you manage the day, and they do they're brilliant at it. They just sort of we'll cover, it's fine don't worry you just look after yourself, and that's what you need them to do. Dementia is about two things: It's about loss, it's the loss of everything you know. The loss of your life as you knew it. But it's about hope. And remember what the little letters can stand for I think that's the most important thing, and for me it's about creating an awareness, it's about making people understand that not all dementias are the same. And you must treat people individually, as to how you see them. You know when I was diagnosed and I went quite publicly with my diagnosis, I lost friendships hand over fist. I swear to God they thought I was getting the plague. But they just distanced themselves from me. People that I had been friends with for 20 years or so, cut off, gone. And I never understood why, what it was about my diagnosis, did I embarrass them? What was it that said, you know what we were very close at one point, but not now? One of the biggest problems for me has been giving up my privacy. And you might say to yourself well, how have you had to give your privacy up? When you can't do things for yourself anymore, and mine is a combination of not only what's going on with me from a dementia perspective, but from a physical perspective with multiple other conditions that I've got I can't look after myself and I was fiercely independent I used to mow my own lawns, clean my own gutters no one touched my lawns because no one could mow my lawn the way I could mow my lawn thank you very much! But I've had to get somebody in to do it. I've had to get somebody in to help me with the gardens. Somebody has to do the windows, somebody has to clean the gutters. Somebody has to help me clean the house because I can't hold things properly in my hands anymore somebody has to help me with food and those sorts of things. I had my hair coloured as a way, people say to me Oh the purple! And I say yes it's to remind people about dementia and colour is one of the first things to be affected and perception and all of that. It's an important thing to remember, because that's why they fall you take them into a white bathroom that's got a white toilet against a white wall and a white floor guess what they are liable to end up on the white floor before they end up on the white toilet. Because they cannot see the difference between the white toilet and the white floor. So you've got to take that into account that might mean putting on a red toilet seat. Easy to me! Put on red toilet seats! I've had friends say to me I've been locked in a toilet for a half hour, because it was a white wall against a white door and against a white knob. and he couldn't work out how to turn the door to get out. You've got to learn to put different colours so that we can determine which one's which. They're the sort of things that are really useful to people's lives. Now there is several things you need to think about you need to think about a will, you need to think about power of attorney, you need to think about guardianship, and you need to think about advance medical directive. All of those things are specifically very important to do. You need to have a will that you're comfortable with the content of. I would always make sure that in your power of attorney and guardianship that there are more than one person, because it does happen that somebody will get sick, have a stroke, happened with a friend of mine. Have a stroke, only one person on the document. The daughter then could not help with mum's financial matters because dad was the only one on the paperwork. There must be more than one person who can take ownership in the issue of guardianship, power of attorney, that sort of thing. It's most important that this is able to be done in this fashion. The other thing to be done is advance medical directive. You need to write to write a document that's going to hold solid for how you will be cared for, that will be you know, do I want unnecessary treatments when there is nothing to be gained from it? What level do I want them to pull out the stops and stop all care? How is that going to happen? What sort of pain relief am I going to have? How's that going to happen? You need to write, research and write a very solid document that will protect you and ensure you have the quality of life that you want. The smart in-home devices and there are a number of them that are available, so go out and search out the technology do your research, but there are smart devices around the home that you can set up that will turn on lights you can get technology such as a care watch where that care watch is an emergency watch, it's a telephone, you can speak, you know press an SOS button on the watch, that then becomes a phone, it dials several people when one answers you tell them what's happened. I've had a fall, I've had a stroke both of which have happened they can then answer and respond and get the assistance as its necessary. The home technology it can be such that you can set up what is equivalent I suppose, I call them like I call them a bot in my own mind. But they are a little machine that sits in each room and you can talk to it from a distance. So that again, if you have a fall in any one of the bedrooms or wherever you can say, hey drop in on so and so and in my case my NDIS support person also has this equipment. So it opens up my bot for want of a better word and she says Sarah, what's wrong? I've had a fall. And I can get help and that voice can be picked up anywhere in the room. If I was to be asked what was the take home message it would be don't be scared. I was. And thats, I know it's overwhelming, it's frightening, we've all seen the images. But there is a light out there at what seems like an incredibly dark and incredibly black tunnel. Now your journey may well be different to mine, but however the journey is it's a matter of putting in place, the supports and the processes that allow you to live it with dignity. But try not to be scared, I know it's very frightening. But try not to be scared...
