The Silent Why: finding hope in grief and loss

Loss 30/101: Loss through Young-Onset Dementia: Jennifer Bute

August 02, 2022 Chris Sandys, Claire Sandys, Jennifer Bute Episode 43
The Silent Why: finding hope in grief and loss
Loss 30/101: Loss through Young-Onset Dementia: Jennifer Bute
Show Notes Transcript

#043. A big welcome to our first in-person podcast guest for this episode - Dr Jennifer Bute, a retired medical doctor from Cheltenham, Gloucestershire. Exciting!

The Silent Why is our podcast mission to open up conversations around loss and grief, and to see if hope can be found in 101 types of permanent loss. Someone recently described us as “collecting stories of hope” and we liked that!

Loss #30 of 101 - Loss through young-onset dementia

In 2009, in her late 50's, Jennifer was diagnosed with young-onset dementia, which ultimately caused the loss of her much-loved career as a GP. Since then she relocated with her husband, Stanley, into a retirement home for extra care, but sadly and unexpectedly he died just four months later.

In this episode Jennifer opens up about the challenges of living with dementia, her passion for helping others with the same condition, her hope for the future of dementia care, her strong faith in good coming from bad, and why they now call it 'young' onset rather than 'early' onset dementia.

Jennifer is a beacon of hope despite facing a number of previous losses including what she describes as 'the totally avoidable' death of her husband, a last-minute end to an engagement, loss of sleep for two years after her daughter’s birth and the death of her mother when she was 4 years old.

For more about Jennifer, her book and the resources she has created for all areas of dementia care (including end of life, travelling, melt downs, restoring speech and much more) visit: https://gloriousopportunity.org/ 

Or follow her on Facebook: https://www.facebook.com/gloriousopportunity     

To buy her book visit: https://amz.run/5ohO 

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Episode transcripts: thesilentwhy.buzzsprout.com

Thank you for listening.

Jennifer:

I'm Jennifer Bute and I've lost so much. Three people I loved dearly, very suddenly, all at different times in my life. I lost my sleep for two years, I lost my job because of a diagnosis of dementia. But I have gained so very much more than I could never have done in any other way.

Chris:

This is The Silent Why a podcast mission to explore 101 types of permanent loss and to hear from those who have experienced each and every one. We're your hosts, Chris

Claire:

and Claire, and we've reached loss number 30. And it's a big week, because for the first time we enjoyed a face to face, in person, interview with our guest in the comfort of our own home.

Jennifer:

I loved my work. I loved my work. I loved my patients. And it was a real loss when I could no longer do what I love so much.

Chris:

We spent a memorable few hours with a lovely woman who literally wouldn't recognise either of us. If we were to meet again in a different context.

Claire:

Dr. Jennifer Bute lives not far from us in Cheltenham, and was a general practitioner, or GP, as we say in the UK, until 2009. When she had to retire because of a diagnosis of young onset dementia.

Jennifer:

I would come into the lounge and think, 'Who on earth are all these strange people there?' And then I would cook a meal for two people, and we would have eight, or I'd cook for twelve, and there would only be two of us.

Chris:

Jennifer has a unique insight into a condition she is familiar with as a GP, and has now experienced firsthand, she told us about the losses she has encountered as part of this condition, along with several other major losses that shaped her world.

Claire:

On paper, this episode, like so many of our chats sounds like it could be sad, but Jennifer is so full of hope and faith, again, like many of our guests, that it's actually been a huge encouragement to us. And we know it's going to be the same for you.

Jennifer:

I'm so grateful for all these opportunities, where I've gained inside knowledge and become aware that there are 1000s of other people carrying inner pain and inner scars that they never talk about and we never know about. And I'm sure it made me a far better doctor. But if these things hadn't happened to me, I would never have had that inside knowledge would I? So I'm sure I have gained more than I've lost through it all.

Chris:

She has a beautiful way of expressing how her losses and ours can be a blessing.

Claire:

In this episode, Jennifer offers advice on connecting with people locked in dementia, hope about the future of the condition, how society treats and views it, and how she manages the obstacles that it throws in her path every day.

Jennifer:

I think it does people harm to wallow in their pain. But some people need to feel a certain stage. And they shouldn't be judged for that. But surely, we need to encourage people in their pain, to perhaps be able to understand that, you know, bumps are what you step up aren't they? Rather than trip over, to just help people to see that it is possible to grow higher in a sense, you know, become different in a positive way. Because of the trauma or the pain that they've gone through. It's possible.

Chris:

To get things going, we asked Jennifer to introduce herself.

Jennifer:

I'm Jennifer Bute, and I recently moved to Cheltenham. I was in Somerset before. And I was once a medical doctor, a nd I've also worked in Africa, and had to retire early. And in some ways retirement is even more busy and challenging.

Chris:

And thank you for being our very first in person podcast guest. It's a pleasure to share our home space with you for this recording.

Claire:

Why don't you begin by just telling us a bit about what your experience has been with lost throughout your life?

Jennifer:

Well, I've had quite a few losses in my life, I think I've had five major losses. I mean, my mother died quite suddenly when I was four. And then when I was at university, I met someone fell in love with them, and we were going to get married, and then he dumped me just before the wedding. So I had to return the presents, and that was pretty bad. And then my third major loss was I had two years with no sleep, because my daughter screamed her way through life for the first two years of her life.

Claire:

Was that your first child?

Jennifer:

No.

Claire:

No? O gosh, so you had others around as well.

Jennifer:

Then my fourth loss was I lost my job. Because I was considered, rightly, to be to greater risk, because of my diagnosis of dementia. And then my fifth loss was that my husband died when he shouldn't have done, due to disgraceful medical care.

Claire:

So what's the time frame for when you had to step back from your job and your husband dying? How long ago were they?

Jennifer:

I find it difficult to remember dates. I was diagnosed in 2009 which must have been probably then when I resigned from work, because my medical defence unit quite rightly wouldn't cover me anymore. It had taken me five years to get a diagnosis. And I did my best to cope. We had a large house and garden where we always had house fulls of people. Everyone was always welcome in the garden, you never knew who you're going to find there. And my husband had managed to put in extra bathrooms and kitchenette, so people could come for rest and relaxation and so on. And reached the stage when he couldn't cope with my not coping with it. Because I would come into the lounge and think, 'Who on earth are all these strange people there?' And then I would cook a meal for two people, and we would have eight, or I'd cook for twelve, and there would only be two of us. And he reached the stage of saying he couldn't cope with it anymore. So he insisted that we moved to Somerset. And then he died about a month after we arrived.

Claire:

What was the cause of his death?

Jennifer:

He had a very unusual and rare medical condition, a Sagittal Sinus Thrombosis, it's about one in 500,000. And I didn't know what was wrong with him because it's so rare. But I knew he was going to die. But none of the doctors would believe me. And I knew that he needed to be admitted to a neuro surgical unit. It was then Frenchay in Bristol, which was the best in the country. And they were willing to have him but would only have him if the medical team said he needed to go and they wouldn't agree. They just said that he had a severe headache, and was confused and all the rest of it, because he had a wife with dementia.

Claire:

Tell us a bit about how you knew about some of this medical stuff. So you're Dr Bute.

Jennifer:

I trained at Bart's because I have an obstinate streak in me and they were the last medical school to take women. So nine women in my year and 111 men, which was brilliant training, and I did lots of different jobs and gained more qualifications. And eventually, I ended up in Africa, running a hospital, by myself most of the time. 200 bed hospital, which was a miracle that I was able to do that, it wasn't me. And I taught. And when I came back to England, I taught doctors and nurses and gained more qualifications. I loved my work, I love my work. I loved my patients. And it was a real loss when I could no longer do what I loved so much.

Chris:

I think you're no stranger to loss we've established that. So whether it be family loss career, what has your experience been like of identifying them as loss, and then grieving them as loss?

Jennifer:

Well, I'm obviously an obstinate kind of person. And I think I saw them all as a challenge and opportunity. Because I believe, you know, nothing's wasted in God's economy, and so my challenge was to find a way through it that was positive and helpful to others. Because I really do believe that what happens to us isn't just necessarily for our benefit, the searing pain, and the loss never goes away of all these things, but in a sense, sorrows come to stretch out spaces in the heart for joy, don't they? One of the analogies I use is when I was in Africa, I sent a clay pot home by post. And that was before I had dementia. It arrived in over 100 pieces. I still have it. And people said that it was fit for nothing. It was rubbish. It should be thrown away. But with my obstinate streak, I decided to put it together again. And I did and it's got holes and cracks and things in it, hasn't it? But to me it's kind of a parable that something beautiful and precious, which I believe I am in God's sight, can leak. You know, we can leak joy and positivity and help and compassion for others through the cracks that have been made in our lives and the more cracks I have, perhaps the greater I leak that.

Chris:

In the last five years there's been quite an increase in awareness of a particular Japanese art form. I can't remember it's name...

Jennifer:

Kintsukuroi.

Chris:

There we go.

Jennifer:

Yes. Now that's a slightly different analogy. That is also wonderful. You're absolutely right. That's the Japanese art of repairing broken crockery with gold or silver or platinum, you know, expensive stuff, filling it up and making it more beautiful because it's been broken. It doesn't leak though.

Chris:

You like to leak!

Jennifer:

But it makes it more beautiful and more precious. And I sometimes use that analogy too, because I believe that my life is more beautiful, because of the brokenness it's had. And I'm precious, more precious, because I believe the glue, that gold has been filled in, is God's care and love for me, you see, it's all of him.

Chris:

So just those initial major losses? Do you look back on any of those and think that one or more of those were particularly challenging to work through or to find the goodness in things leaking out?

Jennifer:

Well, losing my mother, I don't think was because I never knew what it was to have a mother. I mean, obviously, I missed her as life went on. The person that dumped me that has the scars of that has remained with me forever, and always will, because that's pretty traumatic, isn't it? When you've really known someone for so long, and his mother was my substitute mother, really. So I lost her as well, I had to, you know, I chose I had to say to her, 'I'm sorry, I don't think I should continue to have a relationship with you'. So that loss has never never gone. The loss of my sleep that I had with my daughter, that was dreadful during the time, but afterwards, I mean, it doesn't affect me now, does it? But it did at the time, because I was in a right mess. You can imagine if someone walking around who hasn't slept, because she screamed her way through life apart from two hours, or two and a half hours a day, in 2014, she just screamed the rest of the time. And I forgot what I was going to say, um, people would look at me, and see I looked a mess, you know, hadn't washed my hair or bags under my eyes, and they would think it was all my fault. You know, they assumed that either my marriage was in danger, or I was in an incompetent mother. And I knew that wasn't the case. But that was only difficult at the time. So and then losing my job, well, I've got a new job now haven't talking about dementia. So you know, that's a bit of a cheat that one, isn't it? Yeah. And my husband dying. I mean, that was pretty tough as well, because I had the guilt then to carry of being blamed for it, because of having dementia, because no one believed me, every now and again, that flares up and I have to live with that, I have to work through that again. Because I know it wasn't my fault. So I'm so grateful for all these opportunities, where I've gained inside knowledge, and become aware that there are 1000s of other people carrying inner pain and inner scars that they never talked about, and we never know about, I'm sure you know that. And I'm sure it made me a far better doctor, I'm sure it's made me a far better listener. And I even understand how mothers harm their babies. Not that that's any excuse, of course, but I understand how it can be done. And I also understand the lack of support, what it does to people, because that can be pretty bad too. But if these things hadn't happened to me, I would never have had that inside knowledge, would I? So I'm sure I have gained more than I've lost through it all. And we can so often make assumptions about other people, because we don't know their backstory or their their inner pain. And I think I've learned through all this, that often the people who, in a sense are the richer people, I don't mean in any way materially, but the ones with depth to them, are usually people who have been stretched through some difficult experience. It just made them more aware, I think, you know, whereas perhaps if you've never been stretched, you know, it might be perhaps a bit more narrow. But we're all different. But I think it can be an enriching experience to have loss if I dare say that. And I get a lot of flack for saying that, that I even see my dementia as being a positive thing. And people don't like it. They don't like me being positive about dementia. Well, there are many other conditions in life, which, as a doctor, I'd say were worse, but people don't like me saying that. Because to any individual person, their particular loss, or pain is the worst that could possibly be. And many people with severe pain, or scars, resent hearing about other people's problems, because they feel theirs always the worst that could ever have happened. And sometimes people feel if you talk about your particular experiences, they resent it because they see it as a competition, which of course it isn't. But I'm usually very reluctant to talk about my losses, because I understand that many people just don't want to know.

Chris:

You mentioned training at Barts and being sort of the last, or the first cohort of women being trained, not that I want to necessarily go down a side road, but have you learnt to fight to be listened to and understood in quite a male dominated medical world? Have you always felt quite equal?

Jennifer:

That's an interesting question, I've never been asked that before. I've never had to fight. I find it easy to talk to men, even though I was brought up in all girl family, with five girls, and then went to girls boarding school, and then the Girls School. But I feel at ease, you know, with men, I've never had to fight for it in any way at all. You know, we're all equal. We're different and that's a good thing. So now I have never had to fight. And it's not a competition for any of us, whether it's male or female, or for any other reason. We have individual worth, whatever our experience, whatever our pasts, we're all different. We're all equal, surely?

Chris:

Something that's, that's really interesting with your own experience currently, with the dementia, and something we try and use this podcast for is not just sharing stories of those who have faced loss, but trying to share this message that everyone will face loss, so how do we best prepare for it? So with the dementia alone, you're having to identify what you have lost, maybe recently, on the last few years, and also keep preparing yourself for what's to come. So is that part of the hope that you have that, you know, you see a purpose in this that yes, you're recognising things that you've lost because the dementia, but I'm also preparing myself, and with the help of friends and family preparing ourselves for how it

Jennifer:

Well, every one is different. And I don't know how progresses? I'm going to progress, because everyone with dementia is different. We all have a different pathway, even if the same principles of care and support, and patents apply to all of us. Everyone is different. It doesn't just apply to dementia, it applies to life, doesn't it? And family relationships. But I do think that my past losses have helped prepare me, yes. Because I have found that these past losses were not the end of the world. That one was able to grow through them, and help people more because of those losses, which is why I now passionately believe that now I can help more people through my dementia from inside in a sense, because as I learn, I then can pass on that knowledge to people in a way that I couldn't do if I didn't have the right to talk.

Claire:

And that's partly I guess why you named your book,'Dementia from the Inside', because you have that kind of knowledge there?

Jennifer:

Yes. Which is a privilege, isn't it? And an opportunity and a challenge, and I like to see all of life as being that. I think it does people harm to wallow in their pain. But some people need to feel a certain stage. And they shouldn't be judged for that. But surely, we need to encourage people in their pain, to perhaps be able to understand that, you know, bumps are what you step up on, aren't they? Rather than trip over. To just help people to see that it is possible to grow higher in the sense, you know, become different in a positive way, because of the trauma or the pain that they've gone through. It's possible.

Chris:

Where are you at now with'living for the day'? Or 'don't think about tomorrow'? Or 'don't think about the next month'? What's your view of the future? How much do you allow yourself to think of the future?

Jennifer:

I don't, I live one day at a time. I'm computer literate I always have been. And computers my backup brain. So my computer tells me each day what I meant to do, even like when I should wash my hair, because I can't remember I have no idea what I'm going to be doing tomorrow. I don't need to know today do I? So it's not important to me. And there are many conditions where people live in the day, don't they? So I live in the day and enjoy the day. I don't think about the future really. But I'm not worried about it.

Chris:

Just say something into the importance of being intentional. So very much get the impression from yourself and your experience that you found it really helpful to be intentional about actions and putting things in place where some people might just feel like letting life happen to them. This is where I'm at so I'm giving up.

Jennifer:

Well, I think it's important for me. Otherwise, if I didn't have a computer, you know, how would I know? You know, my days would be wasted and because I very much believe, I mean as a doctor I cared about other people didn't I? Trying to help them to be the best they could be. I mean, I'm still, I'm not practising, of course, as a doctor, but that's part of who I am. So I still want to help other people to be the best that they can be. Which means that I need to find ways to do that, with my limited capacity.

Claire:

One of the questions we ask all our guests is whether they've had any issues with the question why, and asking, why, why me? Why this? Has that ever been a question that you've asked or grappled with?

Jennifer:

Never, because we live in a broken world. And you look around the world, and you see what's happening in other places and goodness, it's far worse than what's happening here, isn't it? The 'why' is because we live in a broken world. So why me? Well, you can get run over by bus and it's not your fault. And it's not a question that's helpful, I don't think, but to some people, they need to ask that question. If I need to explore it, and perhaps discover the reason I think some people think it's, again, it's because of guilt, or that they deserved it, or did they do something wrong? I'm sure you know, many people say, 'Well, she didn't deserve it', you know, something awful happens to someone. But that's not how life works, is it? We don't get in life what we deserve. I mean, a lot of us wouldn't get much, would we?! So, you know, that's the wrong question. People ask these questions with the best of motives, don't they, because they care, but it's not the right question to ask. Because in life, we didn't get what we deserve. Some people really don't get what they just sort of, do. They and other people get a lot when they shouldn't, they don't deserve it. So it's just how life, is isn't?

Chris:

Were you able to be this reasonable as a 'preparing for your wedding day, fiance', when everything crumbled days or weeks before the wedding with your fiance?

Jennifer:

That was really tough that was, because it was so unexpected. So utterly unexpected. A lot of people I know with broken relationships, see it coming, don't they, but I had not seen this coming. And it was as if the bottom of my life had fallen out, completely, and it caused a right mess because I had sold my car to put a deposit on our flat. And of course, I didn't want the flat anymore, did I but I didn't get the deposit back. And I didn't have a car. And I had a job in a different place, which had all been arranged, of course, and I had nowhere to live. So it was really bad. And I can remember turning up at the hospital, bit miserable. And the matron said to me, if I didn't cheer up by the end of the day, I'd be out of a job. In nowadays people would take kind of a couple of weeks off with sick leave, wouldn't they? And I wasn't even allowed half an hour to to be miserable. And I had to share up because that's how it was in those days. One had to learn fast, I think. But there again, you see it was an opportunity because other people had to, you know, behave like that, didn't they? So it was good for me to be put through that.

Chris:

To come back to you and your current experiences with dementia? What have been the feelings of recognising the losses through dementia? Maybe loss of memory or just situations where you're you're having to speak to family and friends that you maybe haven't recognised? What what are the feelings there?

Jennifer:

Well being a rebel I think has helped. People say they've lost so many friends once they had a diagnosis of dementia. Well, I haven't lost any friends. I've gained a lot. Because any friend who appeared to be dropping me got chased after and was asked, you know,'what's the matter? Do you think it's catching or something?' Because often it's fear. People drop people with dementia because they're frightened because they don't know how to deal with it. It's like after bereavement isn't it when my husband died, so suddenly, you know where I was people didn't know what to say to me because they knew that it shouldn't have happened. And they didn't know how to handle that. So I had to approach them. So it's the same kind of thing. You have to enable other people to, to learn through your own difficult experience, because it can then be a learning experience for them as well. And one which they hadn't had before. So that is a privilege, isn't it? To help people learn how to help other people walk through these traumatic situations? And to just explain to them, you know, what would be appropriate to say or helpful? It's just such a privilege. You know, that has crumbly bits at the edges sometimes.

Claire:

Yeah, we're recognising more and more with the podcast that so few people really know how to speak to someone that's going through loss and grief of any kind of lots of different types of it. People just don't have the vocabulary. We did an interview recently with a lady who'd lost her husband and she said it was about being uncomfortably present, which I thought was a lovely description. because it's not always comfortable sitting with somebody who's going through extreme grief or some kind of loss, but to be present, is what people want.

Jennifer:

Yes, absolutely right and sit and say nothing sometimes, but just to be with them, rather than run away or avoid them, which is the worst thing I think you can do with someone who's had loss, which is what happened, you know, when my first fiancee dumped me, everyone ran a mile because nobody knew how to handle it. You know, I got the bills for the people for their hotel bills and things, you know, they were so angry about it. And they took it out on me because goodness knows where he'd gone.

Chris:

Wow, that's horrible.

Jennifer:

It was very difficult. And it was, it was doubly hurtful because of that, wasn't it? I remember about the only support I got, I was working in a hospital, and they knew how excited I was about the wedding, of course. And when they realised what had happened, nobody sets knew what to say. But one of the doctors threw me his car keys. And he said, 'I don't want to see the car again, till tomorrow morning, when I need it again', and walked off. And that was all what he said. Because he knew I didn't have a car because I'd sold it you know for the flat and, and he had a big Bentley and I'd never driven a big Bentley before. So it was in Wales, so I drove off into the mountains and walked and walked, it was absolutely wonderful driving. It was brilliant, wasn't he didn't say a word, he just threw me his keys. And I've never forgotten that I've often thought, I wonder if he ever knew how much that had meant to me, because he was the only person who did anything to help.

Chris:

You've been very proactive now with writing information, writing bits that you can hand to people that offer where ways to reassure you to comfort you if you're not having a sort of great time. What led you or what motivated you to be that proactive about educating people about how to be with you?

Jennifer:

Well, before I got dementia, I was writing health education leaflets for the NHS. And when I was given a diagnosis of dementia, I was given no help or support at all. Because in those days one wasn't. So I read every book in the library on the subject, realise that nobody else knew anything, either. So I decided to educate them. So I started writing leaflets, you know, different ones, you know, for the family, or relatives or close family, those who didn't know me at all. So once I could hand out in the streets, almost I mean, I didn't, but you know, people who were acquaintances would have a different leaflet to someone that knew me better. So there were several leaflets around, a lot of them are on my websites. So that was how it started, and that was how my giving talks started, in fact, as well, you see it all. It was just, I'm just so grateful for that because at one stage, they were having a women's business lunch in Basingstoke, and the person who was meant to be speaking on dementia was ill, and I belong to the under-65's walking group, you know, people with dementia, that was the only kind of support one had you just walk together. And they said, well, we'll get Jennifer to come along, and she can talk about her leaflets. Well, I wasn't just going to talk about my leaflets, was I?! And someone in the audience heard me and thought I was quite, quite good at speaking. And then I got invited to speak at a conference in Bristol, and someone else heard me. So that's how it all got started, you see, just because someone got ill on a particular day. And I've been writing these leaflets. So you know, things which are, perhaps an effort, whatever can be used can work out actually for good. And as long as it helps someone else. I'm prepared to do anything really. My father had dementia, and I loved him dearly, and I did my best to look after him, but if I had known then what I know now I would have treated him quite differently. Because I didn't know what I didn't know, and so many people don't know what they don't know. You see, I passionately believe that the person with dementia remains until the end. I mean, most people believe in this period of lucidity just before they die, when suddenly the person with dementia can remember everything. Well if that is true, and many doctors and nurses and people who work dementia say that is true. Well, it must have been there all the time, mustn't it? Is this they're locked inside this condition. And so you have to find them. So I've spent my time trying to teach people how to find people that are still there. Well, I didn't know that you see with my father. And he was an intelligent person and I tried to use logic on him which is useless with someone with dementia. And I should have used other things, you know, photos and memories, things that were familiar to him in order to help him to engage and to open him up and get him to talk, because there are ways. I believe anyone even with advanced dementia can talk. It's one of my specialties. It's because I've had the privilege you see of living in a unit in which had advanced dementia unit with about 80 people in it and visiting them regularly, several times a week, over 10 years, you get to know things don't turn you find what works and what doesn't work. And I know that the person with dementia is still there, even if the family hadn't realised it because we're locked inside a condition and my passion is to get people to find out how to and in a sense, unlock the door and find them and want to do it. But that's not so much about my loss, it's about my gain, isn't it?

Claire:

I heard you talk on another podcast about 'word salads'. Tell us a bit about what a 'word salad' is.

Jennifer:

When it's when you talk, some people call it gobbledygook don't they, when you mix everything up. But it's possible to get people who's speaking a word salad to actually talk sense, you know, if you if you know what to do. But there are lots of reasons for it because words in our brain can be stacked away according to the subject. I can remember early on in my dementia, telling my daughter that the fox shoes or something were out in the garden, no, it wouldn't have been that because the right answer was the foxgloves were out, so it must have been some other animal that I said, you know, maybe 'the rabbit shoes were out' or something. And she immediately knew I meant the foxgloves. But you see, they're both animals. So I just took the wrong word off the shelf. In both respects, my daughter who did psychology at university, amongst other things, she could always work out what I was trying to say. So people who talk in word salads, or the words all mixed up, there's always a reason for it. Because that's one of my principles, there's always a reason for everything. And it can be because they're tired. I mean, I can end up talking word salads, if I get tired as well. And people don't realise that a lot of the time I can talk perfect sense. If they catch me at a bad time, they think I'm not worth bothering with because they can't understand what I'm saying, but it's lovely to better get someone who's talking word salads, all the time to actually to get them to talk sense. And that's a real challenge. And it does work it's as possible. And it's so rewarding. It's what I call convergent speech. Because there are seven methods, but you don't want me to give you a lecture on how to get people to talk. But there are seven ways of getting somewhat advanced dementia to talk. And it's one of the ways.

Claire:

And when we talk about early onset dementia, what sort of age brackets are we looking at?

Jennifer:

Before the age of 65, they prefer to be called 'young onset dementia', because early onset dementia is now thought to mean you're in the early stages. And you can get that at any age. But young onset dementia, which is what I was diagnosed with is a diagnosis before the age of 65. I was in my late 50s. But there are people younger than that, who get it. And I think people don't realise how young you can be to get dementia and some families get very angry about it. And I think that's more understandable the younger the person is.

Chris:

One question. I've still got the word' rebel', ringing in my ears that you said, you said a couple of times about being a rebel. What does what does that look like in your life? How has being a rebel helped you?

Jennifer:

Well, I'm not gonna lie down and take it, am I?! I'm going to find some way around it. So if there's a difficulty, I mean, my son is very helpful. And if I say 'I can't do this', he'll say 'Mum, you can't hide behind your diagnosis!' For example, I made him some rock bands once, and he threw them all in the bin because I'd forgotten to put the sugar in them. And I was so cross. I said'I could have put icing on them'. And he said, 'You can't hide behind your diagnosis, Mum, you've got to do right, you have to find a way to do it!' And he was right. You know, if you want to do it, find a way to do it. So I had to find a way how to cook so that I didn't miss out the sugar. So if I have a problem, and I can't do it, and I have a meltdown or I end up crying, which is what we resort to, childhood patterns, and that's what I did as a child, if I couldn't go I cried. My son's not sympathetic at all, he's right. He says, 'okay, Mom, what are you going to do about it?' Can we find a way around this? Yeah, he'll say 'how can we find a way around this?' No, don't give into it. So he's a great help, too. And I think we need to enable people, not disabled them. So often people come along and they say, 'well, you're not safe, I'll make...' you know, they won't be allowed to go in the kitchen even? Well why shouldn't they? Because they can't cope? Well help them. Do it with them, not for them. And you know, that's so important, isn't it? And I think that people with dementia can progress. I don't like the word deteriorate, progresses is much more positive, progress more quickly, because they are disabled. And in order to keep well, you need to be socially engaged, you need to keep active. And sometimes that's a bit of effort. We know that. Well, the example that I always like to give us if you have a stroke nowadays, people expect people to improve don't they? Or even get completely better. Well, the damage is still there in the brain. So why not with dementia, but in the past, people with a stroke didn't get better. They were just left. But now there's active intervention, you know, there's physiotherapy and the speech therapy and occupational therapy. So why don't we do more with people with dementia doesn't make sense to me, I'm sure in another kind of 10-20 years, people will be appalled at how little we did, in order to help people and enable them to get better. Because we've got so much cognitive reserve in our brain, you know, we know that people have had accidents don't we? We've read people had dreadful head injuries and, you know, they they learn to walk again, or they learn to talk again, even if with difficulty, so why not with dementia, it's not the end of the world. But it's hard work. And some people perhaps aren't able by themselves to do that. And so it's a matter of helping people to understand - they need to help the person.

Claire:

What do you think the main loss is with when you get a diagnosis like dementia and you start feeling those symptoms?

Jennifer:

I think for many people, they see dementia as a death sentence, because most of the pictures people see if people with dementia have people in the end stages of dementia. Which is crazy, because what about all the other people in When you mentioned laughter that, you know, I wanted to ask the earliest stages or the middle stages? But most pictures of people that are seen in advertisements, for example, trying to raise money of people with, you know, who really look as if they've got it. And that's not fair. Because maybe they didn't need to get that stage quite so in that way. I mean, yes, dementia progresses, and there are people who die of dementia. It's true. But many people die of other things rather than their dementia. But it takes work and effort. And unfortunately, so many things come along, like COVID, which have discouraged a lot of these things, hasn't it, to help people. I call it getting on your SLEDGE, S E is Social Engagement, you must keep socially engaged, with a stroke, you don't get better sitting in front of a telly, you've got to get out and do something, haven't you? So in dementia, you must keep socially engaged, not hide away. A lot of husbands are ashamed of their wives, it seems, which is tragic, because they don't understand that it's no one's fault. Why should they be ashamed? You're not ashamed if someone's broken their leg are you? It's funny response. But I think society have helped to increase that kind of attitude. So and then the L is Laughter. Now laughter, I mean, everyone loves jokes, don't they and funny films, comedy and that kind of thing. And there's a lot of scientific evidence that actually laughter releases endorphins in your brain and actually helps you to remain well and improve your memory and formed new neuronal connections. So laughter's important, E is Exercise. I mean, many of us had teachers that walked up and down didn't wait. Why did they do that? Because the evidence is that your brain actually works better if you're moving. So exercise, whatever, even if it's a little bit, whatever it is, is helpful. And the D is Diet, you know, we have to keep healthy, you know, being overweight and diabetic and high blood pressure due to that, again, we know is a great risk factor for dementia, there's a lot people can do to get rid of these, these risk factors. And the G is a bit of a cheat because I couldn't think of anything else. It's a coGnitive Stimulation, you know, we've got to keep our brains working, because when we were kids, our brains were wired up to learn with the reading, writing and arithmetic, weren't they? Doing different things, stimulating our brain at the same time. So brain training is getting better and better at doing crosswords, or better and better at doing Sudoku, or better and better at doing one thing is good, but it's not going to help your dementia. You need to do the different things; learn a new language, you know, music, try and learn the piano, there are people who are doing that, some people like a pet, you need several things, new things. you about humour just within the family, so having the support of your children and your wider family, your husband when he was alive? What are some of the things within your family that have been the strengths of that the togetherness that you've you've had in your family? Well the fact that they're not prepared to let me get away with it. I like that I'd like the way they hold me accountable. I like it when they laugh at me. Now some people don't like being laughed at, but I do. It makes me feel accepted. You know, a lot of people feel they're not accepted anymore because of the way they're treated. It's like people who are disabled, you know, they're not allowed to do certain things, just in case they feel that they're not accepted in the community anymore. And I think people dementia feel they're not accepted because people treat them differently. Well, if you laugh at it, because it in the sense of disability is never you laugh at people or disabled, you know, that's not acceptable, is it? But why not? We had some dear friends who had a son who was severely handicapped, and he fell off something once and his mother laughed at him. And I was appalled. I said, 'How can you possibly laugh at him? It wasn't his fault.' She said, 'I'd laugh at your child if they fell off, or you would laugh at your child, wouldn't you?' she said,'You've got to treat them normally.' And that's true. It's true.

Chris:

Some of those things that you just mentioned there, did that start with you giving permission for your family not to let you get away with things? Or to laugh at you? Or is it just because they knew you? So they did that anyway?

Jennifer:

Probably. And I think my son who's keeps me accountable. It was his idea rather than mine to start with. Saying that I couldn't hide behind the diagnosis.

Chris:

Yeah, so when he throws rock buns in the bin, because you've got to put sugar in. He knows he knows, you know, that's just part of his role to play and not letting you get away with it, not hiding behind your diagnosis.

Jennifer:

And he knows that's how I respond. He knows it helps me, but it wouldn't help everybody. But it helps me and he knows that. So you know, might not be appropriate for some people to do that.

Claire:

I just want to know, what a typical day looks like for you? And have you had to adjust? Or how have you had to adjust? Since hearing the diagnosis. Just for people who might be listening to this and in an early stage of being diagnosed, what what does a day look like? And obviously talking now, you sound like there's there's no issues at all? So when do you have those bad times? And what does it look

Jennifer:

When one gets tired, it happens, people with like? dementia, they suddenly get worse, often you wonder if they're ill, it's the commonest reason for it. But before I moved to Cheltenham, I was living in a different place, and I was able then to, to cook for myself, and do my own laundry and shopping and that kind of thing. But I'm no longer able to do that. So it was a matter of accepting at each stage ones limitations, and it wasn't a matter of trying harder. And the family realised, in fact, it was, you know, the son that holds me accountable, who realised that I needed to move and insisted that I did. So he obviously realised that it wasn't a matter of me trying harder. So I had to move to a place where I didn't need to cook and I didn't need to do my laundry. Because of all the problems I was causing. It I was getting quite dangerous. In fact, because of my hallucinations, I get hallucinations of, of burning. So something really was burning. You know, I wouldn't take any notice because I think it's hallucination. And then it could get really bad mad myself quite ill, on various occasions by using inappropriate things, because I didn't recognise the difference. And that can be jolly dangerous. So it's a matter of doing what you can while you can, and then being prepared to accept that perhaps one has moved on. And then to enjoy a different phase in a different ways. So in my latest challenge is living in a place now where I have different challenges to where I was before, and not regret what I've left behind. I don't regret what I've left behind I, I'm enjoying the present and trying to find, you know, continually, a good way of getting through it, in order to encourage and help other people because there are other people in the same situation. So anything that I can learn to pass on is a good thing, surely.

Claire:

Are the hallucinations a common symptom. I've not really heard that talked about much before.

Jennifer:

Well, when I first had hallucinations, I didn't talk about them because as a doctor, I thought, well, people would think I had schizophrenia or something like that. But it was only later that I found out that I reckon about 60% of people with dementia that I know have hallucinations, but they don't talk about it. Because for some reason, it's taboo. And I didn't realise to start with that I was having hallucinations until I was put on medication that actually improved them tremendously. And then I thought that's funny, you know, I would have hallucinations of smelling awful smells. But hallucinations aren't caused by dementia, they're released by dementia. They come from one's past experiences and one's own personality as well, but it doesn't. So when I get hallucinations of animals like crocodiles, it's because, you know, I worked in Africa and I was involved with crocodiles and crocodile injuries and things like that. But that's funny in this country, I know it's hallucination. But other times you can have a hallucination, and it's perfectly logical. You know, you see people sitting on a settee and you go and talk to them, and the fact that they don't reply is beside the point. After a while you realise, in fact, the aren't there. But then I often see people sitting on a settee, and things like that, and smells like a dreadful, dreadful smells, but I used to work in Calcutta, where there were dreadful, dreadful smells. So you know that these memories in a sense that in the brain are released, I'm sure you're aware that the people with dementia tend to use language that isn't appropriate, and swear more and things like that. So why did they do that? When before they never used to use these words? is because when we were younger, we were brought up to understand that certain words and certain phrases were not acceptable. So in a sense, they got locked away in one's brain and the door was shut on them wasn't it? But unfortunately with dementia, the door comes off its hinges, and they all come tumbling out. But they were the words and phrases that one heard when one was little and one knew one shouldn't use them.

Claire:

So if you swore a lot of your life, you're probably less likely to then have that, because it's not been a closed door to you.

Jennifer:

Yes, yes, yes. But that's why it's so noticeable for people who've never sworn. And people can't understand, they say 'Mum swears all the time', they can't understand it. But my view is also that we don't encourage that we have to find a way putting the door back on its hinges, almost. There's some things we shouldn't accept, I think and some things we should. I mean, certain forms of dementia, take the door of other things, I'm sure you can imagine what you know, particularly with men, and people get very upset about it, you know, they say inappropriate things to women. But in a sense it's not their fault. It's because the dementia is taken the hinge of that particular door. So what do you do? Do you continue to let them upset women? No you don't, you encourage them to find a way of putting that door back on again, surely, surely. I've lived with people who have gone down that path, and I've helped them, perhaps realise that and put the hinge back on again, it is possible. Takes time and effort though.

Claire:

I just want to ask you about things that people might say that are not particularly helpful, because we talk to a lot of people with lots of different griefs. And they've all said different things that people have said sometimes very well meaning, but actually have been quite hurtful, or I've distance them from them unintentionally. What are the sort of things that you would you would hear people say?

Jennifer:

People often say these things because they don't know what else to say. But people can be quite grateful, some people, if you point out that it wasn't the most helpful thing to say. What really annoys me is when people say, 'Well, we all do that all the time'. When the I know, jolly well, they don't. And I know they're just trying to be sympathetic, but I don't find that easy to accept. And I know there are a lot of other people with dementia, who also feel the same way. And they also say it's what a lot of people say. It's as if we're trivialising, you know what is a major things to us as if it doesn't matter. 'Well we all do that all the time', when they don't. To not recognise your sister after 30 seconds is not something that we all do all the time is it? There's a difference, I think between the two, but I do understand that people say it with the best of intentions. It's not helpful people coming up and saying,'What can we do?' That is not helpful at all. But also, I think it's important to remember that other people don't necessarily want to know the details of what one is going through, you know, they might be wanting to be sympathetic, but they don't really want to know the details. So one has to remember to keep one's mouth shut. If you care about people, you have to, because then you can almost discourage them from being willing to help or support in the ways that they can, which might be from a distance. And, you know, we don't we're not here to judge other people, are we able to make them feel guilty. So we have to accept other people really. And it's also I think listening is the main thing, isn't it? And to have the generosity of heart to understand that sometimes when people behave inappropriately, they're actually trying to help rather than the judge them and throw them off. Because that happens so often doesn't isn't the number of books I've read on the subject of people being so angry about people saying the wrong thing, when it was meant with the best of intention, you know, we put our foot in it without meaning to, well I know I do. But we had a discussion about a while ago with people with dementia. We were talking about it in a group and why how one should respond to that. And people came up with lots of different suggestions. I guess it depends on the person, I wouldn't feel able to say a lot of the things that some of the people suggested. I keep thinking of things I might say, but I've never actually said anything at the time. Because I can't remember at the time what I meant to be saying, I just swallow it at the time and think'Oh, no, not another one.'

Chris:

The final question from myself. What would you say your Herman is?

Jennifer:

Well, I think believing that everything is an opportunity. It might be a challenge, but it's an opportunity, isn't it, to help others or to learn something? Because I believe, you know, nothing is really wasted in God's economy. And anything that happens to us can be used if we're willing to help other people. So I guess my Herman is that everything is an opportunity, or privilege even to find that opportunity.

Claire:

As Jennifer lives nearby, we've stayed in touch with her and I'm looking forward to seeing her for a coffee at her lovely new home soon. What an inspiration she is. If I ever find myself facing a diagnosis of dementia, I know that she's given me the hope and courage to face it in a completely different way.

Chris:

Out of interest. We asked Jennifer a few weeks after our meeting what she remembered of her visit to our home, she said she remembered having wonderful baby potatoes served as part of a meal

Claire:

Because all they serve at her retirement home is mashed potatoes.

Chris:

She also remembered our piano and there been lots of microphones in our lounge, but she said she wouldn't recognise the house again or either others in another context, but that's fairly normal for her now.

Claire:

When I emailed Jennifer, I always reply to the previous email conversation so she has the emails have exchanged underneath for context, I reminder how we met and I'll do the same before we meet again. I'll chat with Jennifer has been such a great learning experience for us giving us tips and advice we will remember forever to use it anyone we meet who has dementia, and I can't recommend her book enough. It's packed full of incredibly useful practical tips as well as more about her personal story and work with others with dementia. Her chapter, 'A full life even with exploding bananas', walks you through the practical challenges of her day to day and is humbling, challenging and ingenious.

Chris:

Jennifer has a website full of resources and videos, things that you can download, you can watch you can read, find

it at:

www.gloriousopportunity.org And we'll put a link to her Facebook page as well in the show notes.

Claire:

We're finishing this episode with a quote from Jennifer's book, Dementia from the Inside."We can all pour love and care and acceptance into the lives of those around us, making them more beautiful. No matter how cracked or broken their lives, we can show they are of immense value."

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