ACE - AGED CARE ENRICHMENT PODCAST EPISODE 01 – FULL TRANSCRIPT - CHRISTINE BRYDEN

Christine Bryden - Life in the Slow Lane of Dementia

Ash: Hello, and welcome to the Aged Care Enrichment, or Ace podcast, brought to you by SilVR Adventures. Every fortnight we invite Aged Care industry experts, thought leaders, and passionate individuals to share their knowledge and experience with us as we examine ways to improve the quality of care and the quality of life for seniors. I am your host, Ash De Neef. On today's episode, we are talking to the author and long-time dementia advocate, Christine Bryden, about her life with dementia and her work as one of Australia's first dementia advocates. Christine was diagnosed in 1995, at the age of forty-six, with early onset dementia. Her life transformed immediately as she left her job and focused on restructuring her life and raising her three daughters. In the following twenty-five years she has been incredibly outspoken on her life with dementia, including writing five books about her experiences. We will talk about her first book, Who will I be when I die? quite a little bit throughout this interview. As you hear, Christine is really passionate about addressing some misconceptions of dementia and she talks a lot about the changes that she would like to see in the way that people with dementia are viewed. So, without further ado, here is our interview with Christine Bryden.

Thank you very much, Christine, for joining us on the show today. Let us begin with our first question. In 1995, you were diagnosed with early onset dementia. Can you give us a bit of background as to what your life was like before diagnosis and the diagnosis period?

Christine: I was absolutely frenetic. I cannot describe it any more than that, I just seem to be driving the girls to school and home in the dark and getting massive migraines and just working so very hard. Just really, really working hard as a science adviser to the Prime Minister. Prime Minister's talk, and then teaching, just a massive amount of work. I was getting all these migraines, so I went to my doctor and in the end the doctor suggested a headache diary, various tablets that did not work. During the end she sent me some brain scans, and it was then that the brain scan showed that I had a lot less brain than I was meant to have for someone of that age, I have to calculate, I was forty-six I think. So, then she sent me straight away to a neurologist and I went, and he did further tests and diagnosed me as having early onset dementia. He just kept on reviewing me every few months and then every year and it was still the same. He tracked me as slowly declining, but at the beginning, it was really scary because he thought I might decline very fast, and not to be able to write by the end of the year, so this was May just diagnosed. So, basically, I just kept getting told just to go home and get your fish in the water, which is just awful. Because my youngest was nine, I think. And my eldest has just gone to nineteen. So, yes, it was really alarming. We just moved to a new house, that is how I remember it to. Just taken out a mortgage, so just heaps of things were worrying me at that stage.

Ash: Yes, I can imagine. The amount of change that happened in such a short notice that sounds like moving to a new house and then you stopped work around that time as well, did not you?

Christine: Yes, they test[?] us on a Friday, final diagnosis on Monday. Followed immediately to stop me at work immediately. So, I stopped work on Thursday. Yes, it was--- yes just huge. And I still have migraines, but they have slowly eased, I still get them when I get stressed.

Ash: Yes. Around that time as well like quite early into your journey with dementia you started speaking up about your experience with dementia, did not you?

Christine: Yes, I did.

Ash: Why was that important?

Christine: I did not diagnose for some relief for me, but it is not always a relief. A lot of people feel a stigma. You say you have got dementia; it is just terrible. I just felt that there were so many misunderstandings, misapprehensions, people did not understand and were afraid to ask. No one was speaking up for us at all. It was like we have become the silent people, just locked away. And yet, some diagnosis of the final stages is a huge journey. Most of the time, this can be ten years or more and, yes, it was the assumption made that the minute you get diagnosed you are at the end of the journey. So, I wanted to speak up about that and to get people feeling more encouraged, to give people getting diagnosed more hope.

Ash: Absolutely. And it has been twenty-five years since that diagnosis and since you started speaking up, what is the journey in dementia advocacy for you? What has that been like?

Christine: Well, I sit down here, it has just been exhausting but worthwhile, really worthwhile. I mean now, from the isolating at the beginning because nobody is speaking up, a few people overseas but many-- none here. But now after ten years, others have joined in. And lovely, they have said to me that I inspired them to join in, so I am here to speak up because it felt the stigma of dementia, what it used to be. So, it has been rewarding, but totally exhausting. I have really wanted to step back now because of exhaustion.

Ash: Yes, I think you have probably done enough in twenty-five years. That is a really long time to be involved in anything but advocacies, that
is terrific work. Do you think that there has been progress made in dementia advocacy and people's awareness of it?

Christine: Certainly [inaudible] more people advocating now. Awareness, I feel like we keep on sliding back twenty years ago. The same issues keep coming up, my dear. Why is that? Why cannot we move ahead? I mean, we have probably-- it is probably three steps forward and two steps back.

Ash: When you say that the same issues keep coming up, which issues are they that keep reoccurring?

Christine: That idea that people with dementia really odd and cannot be spoke to about in their threshold[?]. And, yes, just that we are all really odd. And that dementia means the minute you get diagnosed or drooling and, in a wheelchair, is not true. Not true at all.

Ash: What does dementia mean to you, Christine?

Christine: I mean really, it means for me, I have been much, much slower than I was. And I forget a lot of stuff. The doctor said you would expect that. I am much slower to process things and I find it difficult to think and speak. The memory is ridiculous. I mean, I turned to call my husband to say something, but my mouth and I feel like fish was gone, just gone, while I tried desperately to type it in to iCal as my memory [inaudible] and it is gone. It is annoying, I should be more upset maybe, but I am not. Most of the time it feels overwhelming, and defeating, and embarrassing but then a lot less calm. I just forget I have got it; I just paddle along the snow because it is a slow decline, it is normality now. I have become normality. But if I had suddenly changed from where I was to now, it is a huge difference.

Ash: What are some strategies that you developed for making things a bit easier as your journey progresses?

Christine: I try and take rest for days, I space out things I am meant to be doing along the weeks, so I am not trying to do too much at once. I used iCal for that. I was trying to use notes and then I forgot where they were. So, I use iCal to function out my days, and to remember things right. If you were to ask me what did you do yesterday, or last week, I take this hold on and I would look at my iCal to look up what I did because I cannot remember. Or what are you going to do tomorrow, I think just let me look and check. So yes, those are the strategies because I do not know where I am in time, and where it goes, and what is happening.

Ash: So, it sounds like you have found a way with iCal to use technology to remind you to---

Christine: To write it down. Yes. And with books, not to worry about it, because I like reading, cut my one reading, usually [inaudible] or where I am, but it is okay. What is good about Kindle, I read books on Kindle, I say I like to read that book and I type in the scene and Kindle says it is already in your library but is bought last year or last week, or oh dear! no memory of it at all.

Ash: The good thing about Kindle as well as it remembers your place, right?

Christine: Yes, it does. And you can search. I often search, but I cannot put a name in and would go back through the book and show me what they did about that. I find it reading a real book harder because I cannot do that. When I find a word I cannot remember what it was, you push from it, and it tells you what it means.

Ash: I think I remember from another interview, you said that you would keep some notes on the books that you were reading. Is that something that you still do? Or does Kindle allow you to shortcut that?

Christine: Enjoy a lot of pretty shortcut. If I am reading a real book, I have to write notes.

Ash: Yes.

Christine: Because I cannot remember who is who, and what they have done. So, I write that in a piece of paper and use it as a bookmark.

Ash: Well, speaking of books, in the last twenty-five years, you have written five books. That is impressive by anyone's standards. Is writing something that has become more or less difficult over the years for you?

Christine: Much, much more. Yes, much, much more. I have to--- if I am looking up stuff, I really do have to type loads and loads of notes so that I will remember what it is or what to write. Yes, it is amazing. I cannot believe I have written. If you were to ask what were the titles, I would not know as well, it is difficult actually.

Ash: Do you feel like the thrill that you got from--- the feeling that you got from writing your first book, Who will I be when I die?, do you feel like you are getting a similar feeling from writing books now or recently?

Christine: Actually, no. Probably not, it is a good question. I do not think so. They are just books. I cannot believe that I got the first book sell in French, even in Japan.

Ash: Yes, I actually got your first book in research for this interview, and I got it on the Kindle as well. So, it is definitely still available. Something that you wrote at the start of that book is that it was largely for your daughters, and I imagined the place that you were in at that time that you wrote that it is quite a different place to where you are at now?

Christine: Yes, it was. Because when I wrote that, it was an expectation that it might be not able to write within six months to a couple of years because the diagnosis said that I would decline rapidly and then go into a nursing home within about five years, and be dead within three.

Ash: So, there must have come a point where you started to seriously question the prognosis that you were given there?

Christine: Yes. And I would also have compared that with other people who have been diagnosed and we are all been given the same prognosis. So, we are challenging it that now. One of my books is more of a module system, that is a memoir. Before I say, yes.

Ash: Back in your first book, it is a quote that you write that I find really interesting. In your first book, Who will I be when I die?, you wrote that as you progress in your journey with dementia, despite any reduced functioning that you will be, "perhaps even more yourself than you have ever been." What did you mean by that?

Christine: Well, I see dementia as a journey in which towards your inward self in itself. And I talked about masks, [inaudible] maybe the next one. You lose your outer mask, what you do? where you live? that cognitive sense of who you are. And then you go in with towards an emotional self, and then find your inner spiritual self. That is where I think dementia can be seen as a journey inwards towards the spirit of the true inner self.

Ash: And I guess throughout all of these you still feel like you retain some sense of the same identity.

Christine: Yes, I still feel like me.

Ash: Yes. Does that feel like a misconception about dementia?

Christine: Definitely, and I think in my last latest book, I cannot remember the actual title, but I do say, I will still be me no matter what stage even dying, I will still be me.

Ash: What are the misconceptions, do you think need to be addressed in the way that people conceive of dementia?

Christine: Well, the idea that it is just losing things. I think we gain ourselves. I mean, we might lose the busy outsideness but then you have got more time to be truly your inner self. So, I do not want people to think of it as something weird. It is a disease like any other. There used to be the big C of cancer now it is the big D of dementia, I wanted to get rid of that as well. Because it is a hidden illness for most of the journey, but it is an illness. It is not something weird and odd. So, people need to just treat us like normal human beings.

Ash: Let us change talk a little bit here. In your journey with dementia advocacy you have seen quite a few aged care facilities, right? Here and in Japan, and Europe as well, I believe?

Christine: Yes.

Ash: Do you think people are treated in a way that is befitting to somebody journeying with dementia?

Christine: Yes, I have seen it in Japan, not so much here, in some of them in a few in the smaller ones where there is lots of staff. Because people with dementia need one-on-one connection, not just physical care, they need a real people connection, they need staff who have time to listen and to engage, not just fuss about whether we are dressed and fed. We need a quiet environment. Quite many of these home seems to have TV and radio, and clattering and banging, and I would find that really hard to be in that sort of environment.

Ash: Why do you think there is less emphasis on one-on-one connections in some homes?

Christine: Money, not enough money to put proper staffing levels in. What we need is more staff, and then staff that are willing to treat people with dementia as human beings is really painful.

Ash: Do you think not just more staff but the more regular staff, people who you can build a rapport with and know your story?

Christine: Very much so. And I do not want pit staff talking over my head to other people. I want them to be connected with me. So yes, very much, people who, and I used to right now, being painter[?] facilities in country towns, and that is where it is being positive, people know your story. In Japan, as I said, so yes. It is having that respect for a person with dementia.

Ash: A few years ago, correct me if I am wrong, you and Paul, were looking at some different facilities and aged care facilities. Can you talk a little bit about what you were looking for when you were going around?

Christine: Well, really it is that sort of -- not so much what the building looks like or does furniture or what have you but the staff, how did the staff treat people, that is the come. It is a bit depressing now because I have not found anywhere yet so wait and see.

Ash: Yes. Are you still actively searching?

Christine: Not yet. And I picked it up again in a wall.

Ash: Do you think---

Christine: --and write something for our daughters to sort of follow up on.

Ash: Do you think that you will know it when you see it, the right place?

Christine: Yes, you are right. That is, I knew it when I see it. As yet, I have not seen it. In Japan there was one place.

Ash: Yes.

Christine: And I do not speak Japanese.

Ash: But you have spoken about there being some level of connection. You do not really need to speak the language if you can feel that someone is with you, right?

Christine: Very true. Because I have always felt really connected in Japan, one-on-one, spirit to spirit. I think it is because you have lost that cognitive outer mask. So, you are reliant on the emotional and spiritual self.

Ash: Do you think that you are more aware in some ways? More aware of emotions or environments, or feeling?

Christine: Much more. I was very uptight, I think, when I was at work and not a people person at all, and just totally task-oriented, and yes, I think I have become probably a lot nicer since getting emerged.

Ash: Why do you say nicer?

Christine: Well, because I am more people-oriented and task-oriented.

Ash: What kind of things do you spend your time on these days?

Christine: Well, connecting more to people and to nature, taking the dogs for a walk, reading the Kindle books. Now, I might have read it before. More time Face Timing with grandchildren because obviously cannot meet physically at the moment.

Ash: It seems like the writings of yours that I have read and through your speaking interviews, it seems like you have maintained a good sense of humour and humility through your journey, would you agree?

Christine: I hope so. Yes, without the humour you would be a bit sad.

Ash: Now, Christine, you have spoken about the idea of prompts when helping people with dementia or caring for people with dementia, the idea of having things around the room, or around them, that remind them of certain things. Can you talk about that?

Christine: Well, I have seen facilities where the room has got lovely pictures of family, things that were obviously important to the person, a quilt sewer. We need to be in a personalized environment. Personalized environments are very important, as well as prompts, when people are connecting with us. It is not going to correct and say no, no I am married, so and so, did it for years, or I know that is your daughter not your wife. Because all of that can be very upsetting. We cannot help if we forgotten things. Also, when we are struggling to speak, but it is good to talk a little bit so that I might be waving my hands about and try to come up with the word. Just help with that word, with a question mark at the end of it. So actually yes, that is the word. So, I feel inspired of what I am saying.

Ash: Yes, I can imagine it would be frustrating to feel sometimes that you cannot say what you want to say. And then someone just takes over for you.

Christine: Absolutely. I have seen that happen so many times, with caregivers just doing that. And then the person says, "Oh, I am going to give up talking because it is all too hard in our eyes," and nobody is encouraging me. I think people with dementia need a lot of courage, a lot of hope, a lot of help, supportive help, encouraging help, and pat on the back about how wonderful they are doing because another thing, the struggle is huge. And yet, it is like struggling around with one leg or one arm, because you have got half a brain. People need to realize it is a really big struggle and to say we are doing really well, considering--

Ash: Does your husband, Paul, provide that encouragement to you?

Christine: Yes, he does. Definitely.

Ash: Can that be as simple as just recognizing when you have worked hard for something and it has come out? or what sort of situations do you think you respond to praise well for?

Christine: Just a little. I do not need praise so much just to encouragement and grace, do not. Take a restful day and you have done really so much yesterday. It is not so much praise as recognition that it takes a lot of effort just to live.

Ash: When you engage in a task that feels quite difficult, what does the difficulty feel like? Let us say it is struggling to remember something or struggling to focus on something, what does that feel like exactly?

Christine: Well, it does feel embarrassing because I am mentally quite bright. I just cannot do it. It does feel totally overwhelming and defeating and trying to remember something that I was about to say, or about to write, and it is gone, that is so annoying, self-frustrating. I just cannot describe how frustrating that is. Paul is very good at soothing me. He says, look "When you do remember whatever it was you are going to say, it will feel like a new thought" So okay, just go with it, it is okay.

Ash: As if it would not--

Christine: Then I might remember a day later, and it does feel like a new thought.

Ash: What do you mean a new thought exactly? What do you mean by that?

Christine: Well, I am trying to say something to Paul, and I have forgotten what it is. But the next day when I try and say it, and I remember it, I say it. I do not realize it is the forgotten thought from yesterday.

Ash: Okay. So, it is just it is a new point to you, but Paul may have heard part of it before.

Christine: Yes, exactly. But he never says, you told me that earlier because that is really embarrassing, because I am saying, Oh! did I?

Ash: Is it frustrating to be reminded that you said something before?

Christine: Very. Not just frustrating but really upsetting. Because it is pointing out your deficits. It is a bit like saying, "Well you---" I cannot think of equivalent with enough realness, anyway.

Ash: I could see it feeling maybe a little bit pointless to point it out as well. Why would you bring that up to kind of situation?

Christine: Yes, what good is it. To whom it is a benefit.

Ash: It sounds like in general Christine, that your life does not seem to be based around dementia in the way that a lot of people would assume someone with dementia's life is.

Christine: Exactly and that is really important. Dementia is only a small part of life; it is an illness. So, if I had some other illness a toxic one, I am not curable, can it be with me for a lifetime basis or something. I would not want to be reminded of it all the time. I just live as best I can while I can and not dwell on this dementia thing. I try to set it aside. So this was not easy, but yes.

Ash: No, but it sounds like, with your coping--

Christine: I would like [inaudible] people being diagnosed, it is not the end of life. It is a new life in the slow lane of dementia, your changed, but it is not all bad.

Ash: There is something else that you said that I really liked, which is dementia is a change in the way you experience and relate to the world.

Christine: Yes, and you do. Very much so. I cannot put my finger on it exactly. You will appreciate the world more. You are not in-charge of the world like you once were. You have to give up things and try and be comfortable with that.

Ash: Absolutely, that sounds like again, a lot of humility and self-acceptance is required to kind of thrive in this environment.

Christine: And I think that caregivers can help us do that.

Ash: How so, what do they do?

Christine: Encouraging us, and helping us, and supporting us to feel more positive about life.

Ash: What is this about dementia that you would you like to see changed, Christine?

Christine: Well, because it is a hidden illness, like other hidden illnesses, and there are medications that can slow the progress of the sentence, that will unthink of the commandments.

Ash: In the future, how do you think you would like to see people with dementia treated differently?

Christine: Just definitely like normal human beings, just that--- it is not a lot to ask. But what I see is people with dementia treated as physical objects of care, not as human beings worthy of relating to. That I think is tragic. It is not a lot to ask. Suppose family caregivers and professional caregivers relate to people with dementia, as fully human, worthy of respect and honour and recognition as people.

Ash: That really is not a lot to ask, you are right. That sounds like the bare minimum to us.

Christine: Yes. But it is not what happens. And to think of ways also that preconceived idea of what dementia is and is not because I have had people come to help me to then take one look at me and say, look you have got dementia. And that I think is outrageous, affecting person's with dementia meant work. So, take away all preconceived notions and say, all people could have dementia, all appearances, people of all pitch could have dementia. So do not make any preconceived assumptions.

Ash: Absolutely. Yes. I think we are almost out of time, Christine. We just have a few more questions. You touched on something before that I wanted to return to. There is a lot of focus on what people lose to dementia. Can you speak a little bit more about what you have gained through your journey?

Christine: Well, I suppose I gained a lot of friends and contacts who also have dementia and in the outcomes movement all of that. That is like, on one level, I have gained whole new relationship with friends in Japan, but then also in me, I have gained a whole new idea of what it means to be a person, some sort of that, not just with dementia but, yes.

Ash: What sort of things you do identify as more important in being a person now than previously?

Christine: Inner self, who my inner self is. Yes, that journey to the inner self and having time to just be, free to see and if I have time to just be.

Ash: Well, I imagine rushing around all the time and now you can just sit a bit more. Do you have any advice that you give to people who have been newly diagnosed or anybody who has been diagnosed?

Christine: Have hope. If treatment for symptoms has a loss of hope, do not despair. We are all different, our journey is different. But live the best you can while you can and just enjoy every moment of the day and try to make every moment of the day one of wellbeing, because then by the end of the day you will feel good. It is a journey and enjoy it, a journey in the slow lane, enjoy it.

Ash: Fantastic. Thank you so much, Christine. I think we have gotten through quite a lot of questions here. Is there anything that we have not touched on that you would like to talk about?

Christine: It is late night here and I am all done, and my brain is gone.

Ash: Well, I hope you enjoyed this episode of the Aged Care Enrichment podcast, brought to you by SilVR Adventures. If you would like to find out more, you can visit our website, www.silvradventures.com.au. That is S-I-L-V-R Adventures. And of course, do not forget to subscribe where you get your podcasts, to make sure you do not miss out on the next one.

My name is Ash De Neef. Thanks so much for listening and I will see you next time.