Introduction

Abstract

This chapter captures the working process behind creating this book. We look at the writing sessions, the experiences of getting involved, and reflect on the missing voices. An overview of dementia is given to act as a starting point for the rest of the book to build upon. The book is arranged around four core chapters, as well as individual author stories interspersed throughout.

Co-authors: Rosalie Ashworth, Sue Fyvel, Alyson Hill, Chris Maddocks, Masood Qureshi, David Ross, Stuart Hay, Martin Robertson, Willy Gilder, Winnie Henry, Myra Lamont, Agnes Houston, and Fred S. Wilson

Email:

Neuroprogressive and Dementia Network, NHS Tayside, Dundee, UK

Our book reflects a partnership between people with lived experience of dementia sharing their stories with academics, researchers, and clinicians to raise awareness, reflect on positive and negative experiences, and share hopes for future work and research.

The partnership stems from the work of the NRS Neuroprogressive and Dementia Network (NDN) Partners in Research. The group developed from the NDN ‘Patient and Public Involvement’ group, which is made up of people with lived experience of dementia and other neuroprogressive conditions with an interest in research-related activities.

As part of the latest NDN Strategy, people with lived experience have been positioned at the core, with space expanding within the NDN to prioritise working in collaboration with the group, who renamed themselves ‘Partners in Research’ (https://www.nhsresearchscotland.org.uk/research-areas/dementia-and-neurodegenerative-disease).

We hope our book helps people living with dementia, their family and loved ones, professionals who work with people with dementia in some way, and members of the public. We have taken a wide approach to our target audience because we see the book as a starting point for people to learn more about dementia. We have provided examples of resources that our co-authors have found helpful, as well as academic references to allow you to explore the content in more depth.

Meet the Co-authors

Each author has been involved in every chapter, as well as having their personal stories told between chapters of the book. We hope that you can get to know us better as individuals, as well as take away information that may help you.

Rosie Ashworth shares her experience as academic lead for NRS Neuroprogressive and Dementia Network Partners in Research.

Fred, using a pseudonym, shares his experience of living with Alzheimer’s disease.

Sue Fyvel shares her experience as a carer supporting her mum, who had Alzheimer’s disease.

Willy Gilder shares his experience of living with ‘atypical’ Alzheimer’s disease.

Stuart Hay shares his experience as a carer supporting his wife Eileen, who has Alzheimer’s disease.

Winnie Henry shares her experience as a carer supporting her husband Wullie, who had vascular dementia.

Alyson Hill shares her experience as a carer supporting her mum Sheila and her dad David with vascular dementia.

Agnes Houston shares her experience of living with ‘atypical’ Alzheimer’s disease and supporting her husband with dementia.

Myra Lamont shares her experience as a carer supporting her husband Archie, who had semantic dementia.

Chris Maddocks shares her experience of living with Lewy body dementia.

Masood Qureshi (known throughout as MAQ) shares his experience of living with frontotemporal dementia.

Martin Robertson shares his experience of living with posterior cortical atrophy (PCA).

David Ross shares his experience as a carer supporting his wife Anne, who had frontotemporal dementia (Fig. 1.1).

Fig. 1.1

Co-authors joining together using video conferencing

Let’s Write a Book

One of the challenges our Partners in Research have faced is feeling that their experiences are being heard but not listened to. There is a sense that working in partnership to share people’s experiences could add more credibility in certain contexts and ultimately reach a wider audience. We therefore decided to work together on a book that shares individual experiences as well as links with academic and clinical work in this area.

Partners in Research were invited to develop the book proposal as well as express interest in being co-authors of the book. We have been incredibly fortunate to have people living with different types of dementia, family of people living with dementia (spouse or child), and people who have worked around dementia join the book writing as co-authors.

We have worked together to ensure that the book is accessible in terms of both language and format. For instance, quotes have not been presented in italics to make them easier to read. We have opted for a larger font and greater line spacing than seen in other books. References to support our discussions can be seen as numbers within the text, and the reference list is provided by chapter at the end of the book. We have also worked with the Palgrave Publishers and Chief Scientist Office Scotland to secure open-access funding for the book, which means it will be freely available online.

The inside-cover art was provided by one of our co-authors Willy Gilder. The abstract art piece was created while attending the ‘100 In 6000 Dundee Dementia Conference’. A conference by people living with dementia, for people living with dementia.

Writing Sessions

The book was written following the COVID-19 pandemic, with all book meetings taking place online. Although this meant that people who were unable to use platforms such as Zoom were less able to take part, it also meant that people from across the UK could contribute more easily.

Over the course of several months, online ‘drop-in’ sessions took place twice a week with the sessions dedicated to different chapters. Collectively, co-authors contributed over 50 hours of discussion and several hundred thousand words in transcripts. The discussions and transcripts were then used to form the final book.

Throughout the book, the priority has been keeping the wording of the co-authors as much as possible to ensure that their voices are what you hear as you read through. The quotes are grouped to reflect the different subsections of the chapter.

Individual stories were either typed up and sent through for Rosie to include in the full book or people had one-to-one sessions with Rosie. The one-to-one interviews were then transcribed, with as little editing as possible to stay true to the original, before being sent to the individual to review and approve.

The co-authors all had different preferences for the format of the chapters, how much of the drafts they were able to review at different times, and whether this was a physical or an electronic copy. In an ideal world, we would all have been able to edit the same document at the same time. However, due to things such as technology barriers, access to printing, and postal strikes, we had to coordinate comments as we went along with the understanding that this may change depending on when and how feedback was given. Where possible, additional drop-in video sessions were made available for co-authors to share feedback about the drafts and resolve ongoing queries.

Writing a book was a new experience for us all. Several co-authors have reflected on what being involved in book writing has been like for them:

It’s been really interesting, a good learning curve, and really interesting to learn from other authors. It has been a good platform to exchange opinions and lived experiences. I learned a lot of new skills in book writing. Hopefully, users will take on board the recommendation from the book. Co-production is the way forward. (Fred)

When I joined Partners in research, I was not quite sure what I was expecting, but it certainly came as a surprise to me to become a co-author in a book. That was not the only surprise I received. I met a group of strangers online, with the only common thread to tie us together being the diagnosis, either for ourselves or for a loved one, of dementia. As time went on, these strangers became colleagues and then friends. I now look forward to seeing what other surprises Partners in Research can throw up in the future. (Winnie)

I found it helpful to learn of others’ experiences, which perhaps prompted thoughts of my own experience. I’ve learned more about different dementia types and how the book will be the beginning of something to build upon. (Alyson)

One of the biggest challenges for me was accounting for the time it would take to go through transcripts and make sure that the key areas of interest were covered. As a group, we created a broad template of ideas for the book content, but we were fortunate to be able to keep this flexible. As the group got to know each other better, they began to offer each other peer-to-peer support, and areas that we hadn’t originally planned started to come through. It is this mix of experiences and unexpected areas of interest that make me so excited for others to share in our work. (Rosie)

Missing Voices

Before moving forward, we also feel it is important to acknowledge the voices of people missing from this book. We have been very fortunate to have people from across the UK with experience of living with or supporting someone with dementia. We know that there are also people whose voices have been missed, whether that is due to technology literacy, access to post-diagnostic support, previous experience with or awareness of research opportunities, capacity for dementia activism, etc.

We do not intend for the experiences in this book to be generalised across all people living with dementia. Instead, we hope that it acts as a starting point for some of these conversations and a resource to build upon.

Emotional Content

Early research found that people respond best to a healthcare procedure when the information they were given fit with their preferred coping style, that is, knowledge-focused and information-rich, or emotion-focused with a more stripped-back amount of information.

Similarly, Rosie found that people facing a ‘time-limiting’ condition such as dementia tend to be driven to maintain their emotional well-being. In practice, this meant preferring to take a ‘one day at a time’ approach rather than looking too far ahead [1].

We know that learning more about dementia can be emotionally challenging, and it is important to be mindful of this when going through the book, especially for people for whom this is a present concern. The co-authors have shared some of the most difficult parts of their experiences in the hope that others will be able to find some solidarity, comfort, and useful information. You may find you want to read every chapter, or you may wish to use it more as a reference point. There is no ‘right’ way to use this book, and we encourage you to pick it up and put it down as needed. We sign post to other possible resources at the end of the book that you may find helpful if you would like to know more about specific topics.

Dementia Statistics Overview

Dementia is a neuroprogressive condition, which means it is something that affects the brain (neuro) and worsens over time (progressive). Alzheimer’s Research UK [2] reports that just over 500,000 people in the UK have a diagnosis of dementia. However, the estimated number of people living with dementia is much higher at 885,000 [3]. The difference highlights that hundreds of thousands of people still do not seek or receive a diagnosis, potentially due to stigma, fear, not recognising signs and symptoms, and distrust of healthcare [4, 5].

Approximately 7% of people over the age of 65 are estimated to have dementia. Importantly, this also means that over 90% of people over the age of 65 do not have dementia. Approximately 5% of people living with dementia have early onset, meaning they are diagnosed under the age of 65 years old. This equates to approximately 42,000 people living with early-onset dementia in the UK. [6]

Alongside statistics about dementia, it is worth noting that there are also approximately 700,000 informal carers associated with dementia in the UK, that is, family and/or friends who provide unpaid support [7]. Carers supporting people with dementia are also more at risk of psychological and physical health difficulties [8], with lower quality of life than carers of people with other health conditions [9].

Finally, research has shown that the relationship between dementia and quality of life is not a linear correlation, that is, an increase in symptoms does not uniformly show decreased quality of life [10]. Research has highlighted the importance of activities of daily living and independence as contributors to quality of life, as well as the ability to adapt to change [11, 12].

Chris’s Story

The first diagnosis was vascular dementia. I felt lonely, hopeless, lost, all those things. It felt like I’d had a death sentence. That was in 2016. But before that, I had three mini strokes between 2013 and 2015, which left me with some cognitive problems. I noticed such a change in things, but they kept saying to me, there’s nothing wrong with you. It is just because you’ve had the strokes.

I thought I was going mad. There was one day where I got up and I could not remember how to get dressed, and I just sat on the bed for ten minutes, and it came back to me. In the mornings, I have three things to do, feed the cats, take my tablets, and make myself a drink. I found myself wandering around the kitchen, and not actually doing any of them. I was struggling to get things done in the correct order. I went to my GP and I told them that something was not right in my head and she told me that she was there for my physical health and not my mental health. I left there in tears. The GP should be your first port of call, but my symptoms were ignored. It was only some months later when they saw I was having another stroke, and I lost some coordination in my hands. I ended up in hospital, and it was a consultant in the hospital who referred me to the ‘Elderly Care Assessment Unit’ even though I was 60. Even the name of that felt wrong. I thought I was just going there for an assessment, so I went on my own, but that’s when I got the diagnosis. I wasn’t expecting to get a diagnosis. It wasn’t good. I was given no information. I wasn’t directed to any services. It is just like, you’ve got dementia, get your affairs in order, type of thing.

I got a leaflet on vascular dementia. When I read it I thought, well, that’s me. That’s me. I ticked all the boxes. I gave a copy to my brother and my sister to read for them to understand it slightly better. I still do not know whether they read it. They never spoke to me about my dementia. It’s difficult, I was the eldest kid. My sister was a single parent, and so I was always back up support. However, when I got my dementia diagnosis, I could no longer do a lot of those things that I had automatically done for her. I had to start saying no. I like to help people and saying no to my sister was particularly hard.

I moved from Wales to England, now I’m living hundreds of miles apart from my siblings. I suppose it’s given me that time to look after me a bit more. However, getting continuity in healthcare support was impossible. The GP said ‘oh you’ve had your diagnosis’, and they didn’t want to know me. I had to keep on at them for three years before I eventually got to see a neurologist. That’s when I got the Lewy body dementia diagnosis. I don’t know whether I was misdiagnosed originally, or whether you can have more than one form of dementia. After that second diagnosis, I had a tremor in my arm, so I went to the Parkinson’s clinic because my dad had Parkinson’s disease. They said it wasn’t Parkinson’s but that I had a vascular Parkinsonism.

So, when I moved from England, I suppose my records were sent through, and the Parkinson’s nurse picked up on this Parkinsonism. She sent me an appointment to see her, and she said, ‘I think you’ve got Parkinson’s disease, and I will start you on the medication’. She said if it doesn’t work, you haven’t got Parkinson’s, and honestly, I was like a new person when I started taking the medications. I was sleeping all the time before, but with the medication I had more energy, I was more with it. So, I was then diagnosed with Parkinson’s disease.

I was so stressed and anxious at the time, which meant the tremor got worse. It was so visible to other people, and you don’t want other people to see that you have a tremor. I could feel that things were changing. For example, I lost my sense of taste and smell (and this is before COVID-19, so before that became a sudden phenomenon that everyone had), and I still get this problem. I have really painful restless legs every evening, to the point where I don’t know what to do with myself because of the pain. So, I pace up and down, and that is one of the symptoms. I get between three and five hours of sleep at night, which then leaves me tired in the daytime. My spatial awareness is being affected; I’m always covered in bruises because I walk through a doorway and bump into the door, or something.

I was not allowed to work. They would not consider reasonable adjustments. When I tried to go back to work, they put me on a disciplinary process and claimed I had already had a meeting about the first stage. The supposed meeting was on a day that I wasn’t even working, it had not happened. I ended up being signed off for work-related stress before they retired me against my wishes. I have always worked. The emotional impact was huge. I just could not stop crying, and I became a prisoner in my home for about three months. I’m not exaggerating when I say it felt like I’ve been given a death sentence. My dad had dementia. I’ve seen him go through his journey, and I saw that that was my future. I was reading a leaflet about vascular dementia, and they said the average lifespan of somebody from the time of their diagnosis is five years, and that was in 2016. That was six years ago, and I’m still, still going. I’m okay.

The only good thing with Lewy body is that after my diagnosis, when I was given nothing, I found the Lewy Body Society in the UK. I rang them and started working with them. An admiral nurse was also working with them, and they’ve just taken on a second one. There has been so much support from the Lewy Body Society. We’ve had zoom sessions and talks, and one-to-one support as well as a group. One of the things that we did, and I still think is amazing to this day, Heather and I had to put ourselves in each other’s shoes. So, Heather had to imagine what I’d be thinking and vice versa. We know each other so well, but we still got it so wrong. I thought Heather would be thinking one thing, and she said, ‘oh, Chris would be thinking that’, and we were miles off.

Heather and I met in 2010. We are both retired police officers. We met at a police rehabilitation unit. We were both having treatment, but she was from England, and I was from Wales, so we would never have ordinarily met one another. I put off moving in with Heather for quite a while because I didn’t want to impose my dementia on her, and I thought it’s not fair. I’m not going to get to a place where it’s not better. We had our retirement mapped out, we were going to go around Europe, so that has changed very much. Sometimes we make plans but then I’ve got to say, ‘sorry I cannot go. I’m too tired. I’m not having a good day’ or something like that. It’s hard for Heather, sometimes she says it’s like going back to being single, because she cannot count on me to be there to do the things that we were going to do, and I feel guilty about that.

I was unfortunate enough to have a one-week stay in the hospital during the COVID-19 lockdown. I was put in the COVID-19 ward even though I had tested negative, and I knew I didn’t have COVID-19, but I had some symptoms. People walked in with full PPE and without a name tag. I didn’t know who I was speaking to, and I wasn’t getting my Parkinson’s medications on time, which caused hallucinations. Nobody said to me, ‘How does your dementia affect you?’

The experience was so disempowering. My care plan was pushed to the back of the pile. They hadn’t looked at it even though it had everything about me, what I like, and how my dementia affects me. My time in the hospital would have been far better if I had just been asked that question, but nobody asked me. I’m now involved in the training of medical health professionals, and it’s now mandatory that they must spend time with people living with dementia and their families. Doctors have realised that you can learn a lot more from people with lived experience than from textbooks. One doctor gave the example of a lady who was getting very agitated and who people were dismissing it as ‘oh she’s got dementia’. They were not recognising that the lady was trying to communicate something or had a need that was not being met. They were at the stage of calling security to come and deal with her. But thanks to the training, the doctor felt more confident in supporting the lady. He got down on her level, just spoke to her, and calmed her down. He said he could see that there was something causing her to react in this way. It might be that she was in pain or needed the toilet. He said, had he not done the ‘Time for dementia programme’, he would not have known this, and the worst thing that could have happened is security being called to this lady who is already distressed. On top of that if you are thinking that dementia is all about memory, you won’t understand the other symptoms. The doctor says that they are getting a lot out of this experience, and it will make things better.

Chris

Useful Resources:

• Lewy Body Society: Shining a light on Lewy body dementia https://www.lewybody.org/ or 01942 914000

• Alzheimer’s Society: Time for Dementia programme. https://www.alzheimers.org.uk/get-involved/time-dementia-programme.

LGBTQ+ Community

As part of her story, Chris has shared some of the challenges she has faced as a member of the LGBTQ+ community, as well as challenges she worries about for others, including the pressure to conceal sexuality as an LGBTQIA+ person needing to engage in dementia services [13]; additional challenges trans-people with dementia can face [14]; and the greater need to plan for the future [15] to manage the heteronormative culture in dementia care [16].

There’s still that stigma attached to dementia, and I think that if you’re LGBTQ+, that’s another stigma, so it’s like having a double stigma sometimes [17]. I was a police officer, and I did not realise until I was in my 30s that I was gay. I certainly hid my sexuality while I was a police officer because there was discrimination, and they would have made life difficult for me. Approximately three years before I joined the force, two women got kicked out of the Police Force because they were Lesbians. (Although of note, there have since been strong efforts to improve the work environment for LGBTQ+ police officers [18]).

My partner Heather knows me, what I like to eat, the types of clothes I like to wear. My brother and sister were originally going to appeal when I put Heather as my Legal Power of Attorney. If I had died, my house and my savings everything would have gone to my brother and sister because they were my next of kin. My brother does not even know I’m gay. I have always said that if he asked me I would tell him the truth, and I think he probably knows, but he’s never asked me, and he’s never spoken to me about it. My sister is very different from me, and she does not know what I like. So, Heather is my next of kin, and I want to safeguard her. (Similarly, research has discussed the importance of chosen family and the desire for more open policies for end-of-life care and non-biological family members [19].)

I have worked on something with the Alzheimer’s Society called ‘Bring Dementia Out’, which tried to find LGBTQ+ people living with dementia. But we could hardly find anyone to come forward. Maybe because they’re very much in the closet, or they’re too scared because they do not think they’d be accepted by society. I’m also in a Dementia Advisory Group for people who identify as LGBTQ+. We have a Peer Support meeting where the group has said it is just so nice to have somewhere they can feel safe, and they can talk about whatever they want to talk about.

It is time to break down those barriers and rules and get the support for marginalised groups of people. It does not matter about my sexuality or the colour of my skin or my religion. What matters to me is that I need to raise awareness about dementia, and I think this is sometimes where the focus is lost.

Chris

Useful Resources:

Alzheimer’s Society

• How Everyone can help to Bring Dementia Out. https://www.alzheimers.org.uk/get-involved/bring-dementia-out

• Source of Strength: A Woman with Dementia who is Fighting Back. https://www.alzheimers.org.uk/dementia-together-magazine/june-july-2018/source-strength-woman-dementia-who-fighting-back

• LGBTQ+ Living with Dementia. https://www.alzheimers.org.uk/get-support/daily living/lgbtq-living-with-dementia

LGBT Health and Wellbeing (Scotland)

• Proud to Care LGBT Dementia Project (June 2018–July 2020). Impact report. https://www.lgbthealth.org.uk/wp-content/uploads/2021/01/Dementia-Impact-Report.pdf

• LGBT Health and Wellbeing. A Guide for Health and Social Care Providers. A Dementia Toolkit. https://scottishcare.org/wp-content/uploads/2021/02/LGBT-Dementia-Toolkit.pdf

Alyson, Sheila, and David’s Story

My mum Sheila and my dad David were diagnosed with vascular dementia within six months of each other in 2013. Mum resisted the diagnosis initially and therefore resisted any attempts that we made to try and organise things. She had a series of mini strokes, similar to her mum.

Mum also didn’t recognise that dad had dementia. Things came to a head in 2014 when dad was admitted into hospital after a fall. Dad had always been more of a homemaker than mum. He cooked and cleaned—they didn’t share the same interest in diet. Dad could cook anything; mum was accused of watery juice and poor tin can opening (Fig. 1.2).

Fig. 1.2

Alyson’s dad, David, as he would like others to see him

Mum has retained her ability to source food, as she knows when she is hungry. When it would get to a mealtime, mum would ask dad if he was hungry to which he always replied ‘no’. So, she would feed herself. Dad always refused on the basis that he did not like what she would prepare. Mum assumed he was just not hungry. Dad was dependent on mum’s mobility as he broke his hip in a fall and did not regain much of his own mobility. Walking around the flat to and from the bedroom and toilet was his daily exercise.

At a set part of the day, mum would say to dad ‘I’ll get your medicine’, which meant she would fetch him a glass of whiskey and then continue to fill his glass through the night. As a result, dad fell, put his head through the plasterboard, and lay all night on the floor. Mum couldn’t lift him, so pulled the blanket over him, left him there, and went to bed. Mum was clearly unconcerned and considered that his own behaviour had got him there, but it did lead to injury and a hospital admission. At a case conference with the family and nursing staff, it was agreed that they could move to my house. I had the facilities at the time where they could have a bedroom, a bathroom, and a living room to themselves at the front to maintain their privacy as a couple.

Two weeks after they moved, I could hear a car engine running, and there was Mum leaving via the back door with a suitcase in hand. She had ordered a taxi for herself and left dad behind. Mum did not care for living so remotely, as she was still physically able and liked going to the shops, so she wanted to be in the town. Dad’s circumstances were different: he physically lost strength quite quickly, and he was incontinent and catheterized. With the separation, I had to think of ways to continue their relationship so organised date nights, etc. Mum would come back to mine at the weekend.

They were grateful for the support initially until they received an invoice for meals on wheels and they cancelled quite quickly. So, then I had to limit and supervise their contact as mum would sabotage the care given to dad, saying he didn’t need it. This arrangement lasted for about a year, and the month before dad died, we had taken him back to their flat to be with mum. We are thankful for this ending. Mum took some time to adjust. At least 18 months. She couldn’t articulate her feelings but was self-soothing with expressions like ‘dad had told her he loved her for 60 years’.

During a casual conversation about something else, I mentioned Mum’s diagnosis to her. She was furious and denied it before calling the GP practice to demand a retest. She scored better the second time around, which she took as evidence that she was okay. My mother was very headstrong as an individual. Even though you may say at 92 with dementia that she was vulnerable, she could still demonstrate some boundaries, and whilst there may not be a verbal cue when she is unhappy, there will be non-verbal cues. Looking back, we think of mum’s determination after her latest fall to seek a doctor’s opinion, rather than take the word of a paramedic, as evidence of her condition. That and the view that only a certain cream prescribed by the doctor to treat her bruised back would do.

In June 2020, I had to be assertive with mum to move in with me. There were several reported falls in the flat and we had to respond to each one. Mum only had one hour of private care per day for shopping and socialising. We couldn’t risk anyone’s safety, so additional care was necessary. Given the bleak news of a high number of older people dying in care homes due to COVID-19, this was not an option. None of my siblings were in a position to offer care. I was working from home and had the space. At the last visit to mum’s flat, I told her I was going to come back for her that afternoon as soon as I’d made up a room for her. Once at mine, you could see that she felt it was a relief. We hadn’t appreciated how much care and support she actually needed. A masking had been going on to quite a sophisticated level. Within two weeks, she was very, very ill. My brothers’ always say, and I agree with them, that had mum not gone into hospital when she did, we would have lost her two years ago. She was so unwell. She was not eating.

Mum has never asked about my dad since the day she’s been here. She sometimes does not recognise she’s been married and recently gave her maiden name in a memory test. At times, she will take off her engagement and wedding ring asking them to be put in a drawer as they were her mothers. Mum could be quite a difficult person and had a small circle of friends. Everything was invested in her husband and her children, which makes it even more curious that she does not remember that she was married.

My oldest brother, who mum would probably save the greatest welcome for, is not always recognised now, even if mum has a picture with them both together in front of her. She is not able to make that connection. When my brothers talk about things that are going on in their life, it is meaningless to her. If she has been out somewhere I will say ‘mum, tell them about such and such’, for example, you went out for your tea. So, I will feed her information, which keeps her part of the conversation, and there might be something that prompts her memory, ‘Oh. that is right they had that lovely soup!’.

She will eventually connect in some way. An iPad was purchased with the aim of connecting to family a distance away, although this isn’t used as much as it could be. Communication is one of the most important elements in our relationship. Even though there is a high risk of it not being retained, I do give mum updates and news on plans. Mum will look round, and you can see her just trying to work out who you are or say something. Just wanting to communicate. She wants to socialise. I’ll stick my tongue out and she will laugh and she will do it back. I will say something like, ‘You could go to jail for that!’ and laugh, and she’ll say, ‘if I could go to jail for that, you will too!’ So sometimes it is just that cheeky communication that’s her way of saying, ‘I’m still in there’.

There are times when mum is seeking reassurance, and this is usually in relation to an old memory. She will often say, ‘is mum coming for me?’ and I will say, ‘How old are you?’ … ‘I’m 92’ … ‘So how old do you think your mum would be?’ She then logically knows that it cannot be right but doesn’t get upset about it. She asks for her sister, who has been dead for 23 years, or her brother, who has been dead for 50 years. It does not distress her, which is great, and she does think things through. She’s very good at problem solving still in her own way. She’s very, very brave, and she’s got a high pain threshold. She’s been dealing with a hurt wrist, and the gout has been dreadful.

She doesn’t recognise me sometimes, although she can sometimes recognise situations. I had a break away and when I came back, she said ‘are you the one that we were waiting on coming back from America?’ She says ‘well, the man that lives up the stairs is looked after me very well’. (Referring to my son/her grandson who stayed to look after her.) The fact that she could do that is quite remarkable.

She has this thing about the curtains being closed that drives me mad, but I tolerate it for her. She loves the curtains shut, and I hate it. So, every night she’ll ask, ‘can you draw the curtains?’, and I say, ‘have you got a pencil!’ Mum laughs at this, but still wants the curtains shut. So, shutting the curtains was a job that she had to do. Although she’s not always able to do it now and last time I tried that joke with her, it just fell flat. Open curtains are clearly still something that bothers her because I’ve found that if I leave the room and come back the curtains will have been shut. She’s like the ‘Kit Kat Panda’ that comes out of the cave when the photographers got his back turned. That’s what mum’s like at times, she has got up and shut them. It shows that there is still some spark there.

My younger brother finds it difficult to see mum in her current situation. If I take her down to his, then there is somebody who can ‘speak mum’. Otherwise, I don’t think he feels confident that he could help if she needs something, no matter how much reassurance I give. The most strenuous time for me was probably negotiating the incontinence care, and the first time I had to give her personal care. It was not something that I thought I was prepared to do, but it becomes easier because the priority was preserving mum’s dignity. We have the community alarm, you could call and get them to come out, but you have got to balance that against a weight of them having more urgent appointments and potentially waiting three hours before mum could be clean and return to bed/chair.

Our relationship has gone through a number of changes and has been strained at times through frustrations and difficulty communicating. We didn’t think that she would accept care from me and for as long as she has. But, I have had 56 years of mum, I can speak Sheila. The fact I understood mum so well, this caused conflict in younger years. We got better over time; we have a routine and we have learned how to work together. Mum is very easy to care for. She will happily accept most care. There was only one real flashpoint when that was not the case. It was 3:00 AM, and I needed to get her in the shower, shampoo the carpets, and change the beds. Mum was refusing, so I said ‘if you cannot let me help you, then I cannot look after you, and if you don’t want me to look after you, then I will have to look at other arrangements. I do not want to have to do that.’ It was a negotiation; she understood the logic and cooperated with what I was trying to do.

She was still in there, and still is my mum. We accept her in a different guise now, her personality has changed, and she would sometimes say things that might hurt if we didn’t understand. We haven’t been 100% with it, you know, just limped along as best we could. Incidents that happen are quite funny to me now unless they’re at 3 o’clock in the morning and I’m needing sleep!

I want people to know that dementia is not all bad, you know? Just because that diagnosis is given, it is not the end of the world but the beginning of a new one. Mum is a resilient woman who has a desire to live and is ageing with a real cheekiness to her. She makes me laugh so much (Fig. 1.3).

Fig. 1.3

Evidence that there is life with wine after diagnosis

David and Sheila helped shape who I am and give me the motivation and capacity to care. I am still learning from their examples.

Alyson

Useful Resource:

• Angus Carers Centre. https://www.anguscarers.org.uk/