Finding love again

With over 200 blogs on D4Dementia now, some of them approaching 7 years old in May this year, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at love.

I finished my January 2019 blog with a quote that talked about how a person who is struggling to express themselves, perhaps because of their dementia, is:

“Ultimately looking for understanding, appreciation and love.”

Of course that could be said for all of us regardless of the circumstances surrounding our health, but a diagnosis of dementia brings the importance of love and expressing love into an even sharper focus, as I described in my 2014 blog, ‘Amour’:

“Dementia taught me to tell my dad I loved him every time I saw him. I say dementia taught me because a diagnosis of a terminal disease makes it imperative that you make the most of every moment. There isn't time to be bashful - you will have a long time to regret what you didn't have the courage to say or do.”

But that isn’t to say it’s always easy to express love or feel love when dementia is part of life. Last year I met a lady who very candidly spoke about her relationship with her mother, who is living with dementia, saying that she found it very hard to love her mother now.

Many people might harshly judge this lady for a comment like that, but on further exploration it was clear it was a remark that came from a place of immense love and a longing for that love to be reciprocated. The lady felt bereft because of her perception that her mother didn’t love her, but when we reflected on her time with her mother, it became clear that she was missing very subtle signs of her mother’s love, purely because they weren’t the obvious expressions of it that she’d been used to her whole life.

This lady viewed the changes in her mother only through a negative lens. She spoke about her mother’s repetitive speech, her lack of interest in previous hobbies, how she no longer wanted to eat foods she’d always enjoyed and how she constantly walked, making her daughter feel that she just wanted to get away from her.

But we found a flip side to this. The repetitive speech was an opportunity for the lady to reinforce the information her mother needed, and that could come from a place of love if she realised the trust her mother was placing in her to provide that information in a calm and consistent way.

The lack of enthusiasm for previous hobbies could be interpreted as an opportunity to try new things, finding common interests that they could enjoy together, and likewise with trying new foods. We also talked about walking, and the joy that could be found in walking together, exploring the environment and taking notice of the details around them, something that is known to be very good for improving wellbeing.

Like many people, this daughter saw her mother’s walking through the negative concept of wandering (not a phrase I like or agree with), which is a topic I wrote about in my 2012 blog ‘Going Places’:

“Wandering suggests aimless moving from place to place without any clear objective, but that is not the case in people with dementia. I have written previously about the need to appreciate, understand and connect with a person who has dementia within the world THEY are living in. It may be a world from their childhood or their years as a youthful adult, it may be a happy place or a sad and worrying place. Wherever it is and whatever the circumstances, the person with dementia may well feel compelled to do certain things, and have great purpose and direction in doing them, however fleeting that may be.” 

For this lady’s mother, walking was something she needed and wanted to do, not something to be in any way suppressed as her daughter thought it perhaps should be. Supporting someone you love to do something that they love is in itself an act of love. Not one with big declarations or fancy ribbons attached, but one that is far more meaningful when you consider that many people who are living with dementia and want to do things like walking are prevented, sometimes forcibly, from doing so.

I think, and hope, that I helped this lady to find a different perspective to the one of desolation and isolation that she was feeling. Accepting that dementia sometimes changes our perception of loving and being loved is a tough realisation, but it is one that provides a degree of peace, and sometimes even hope – hope that you can still have those moments of connection with the person you love, however fleeting those moments may be, and feel that surge of emotion that only love can give you.

As I said in my Amour blog:

“During those difficult moments, the sadness, the emptiness, the emotional rollercoaster of being a carer, it's the love you feel that gets you through.”

Until next time...

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook

The rainbow of dementia

This week will mark what would have been my dad’s 91st birthday, and later on in April, the 6th anniversary of his passing. These milestones have left me reflecting on the last 19 years of dad’s life, how dementia crept into his life and year by year gradually overwhelmed him.

The picture painted of dementia in 2018 seems to have two distinct hues - the brightness of those who are living well, or as well as they can, and the darkness of those nearing the end of their lives, with the multiple physical health problems that I remember only too well. Yet as I think back over those 19 years, it was never as simple as two different hues for my dad.

If anything, it was much more like a rainbow, with the red roughly representing the beginning of my dad’s dementia (which was a gradual onset rather than a distinct change from one day to the next) and the violet representing the end of dad’s life. As the curves change colour, and reduce in size, so my dad’s dementia deteriorated, leaving him with fewer skills and more struggles.

Why a rainbow though you might wonder? It’s bright and cheerful and associated with the freshness and beauty that follows the darkness and rain. I certainly haven’t chosen it because I’m a 100 percent devotee of optimism where dementia is concerned. My positivity has always been tempered by stark memories of times that whilst difficult for me, were undoubtedly far worse for my dad.

I’ve chosen a rainbow because to me it represents balance: The brightness of the colours suggests something special and positive is possible at any point in a person’s dementia, but the reducing curves remind us that the struggles, or the paddling as my friend Kate Swaffer describes it, only becomes more pronounced.

If I think about my dad’s 19 years with dementia - certainly for the majority of the first 10 years - whilst the difficulties gradually increased, my dad had independence, looked after himself reasonably well for maybe five of those years, could read and write for the early years, follow TV programmes and sports, had a fairly good command of language, was able to participate in conversations, and certainly wasn’t slow in articulating his viewpoints. By 2018 standards, he would have made a good Dementia Diarist, a popular DEEP (Dementia Engagement and Empowerment Project) or DAI  (Dementia Alliance International) member, and an engaging public speaker (although my optimism on all of these fronts is tempered by knowing that my dad was a fairly private man by nature, so maybe wouldn’t have wanted to speak publicly).

Those are probably the red, orange and yellow years. By the time we get to the green and blue on the rainbow, dad’s in and out of hospital, and moving from a residential care home to a nursing home. For my dad, the key turning point is his larger stroke, and from that day confusion, communication difficulties, urinary incontinence, changed behaviour and a whole raft of inappropriate interventions (most notably antipsychotic medication) follow. My dad is becoming a much more stereotypical example of what society thinks about when it thinks about a person with dementia.

The indigo and violet years are characterised by further physical decline, with immobility, double incontinence and four years of dysphagia for my dad to cope with before the end of his life. This is the picture most people conjure up when they or a loved one are diagnosed. But as much as the ‘red’ years don’t go on forever, so most people with dementia don’t jump from ‘red’ to ‘violet’ either.

I am a great believer in seeing every face of dementia for what it is: The person living as well as they can in the red to green curves of the rainbow is giving hope to every single individual who has just been diagnosed or will be in the future. Without that hope, everyone just fast forwards to a picture of what 'violet' looks like, and that is only going to lead to more rapid deterioration with the added pain of potentially severe depression, hopelessness and even suicidal thoughts.

The person living in the blue to violet curves is never going to offer the same type of hope. They are coping with a greater array of physical health problems and are increasingly reliant on others for their care and support. Our perception is that brightness is fading, but what we learn from these individuals about the human spirit is perhaps even greater than their more articulate peers. Moreover, the qualities we find in ourselves from becoming caregivers represents invaluable, albeit sometimes very painful, life lessons.

Aside from my dad and the people I’ve known personally who are affected by dementia, I’ve met so many other individuals through my professional work who are living with dementia, coping (or not coping, and yes, sometimes suffering) and every single person has taught me something. As my dad took his last breaths I learnt about peaceful serenity. As I see a person living with dementia giving a conference speech, I learn about their strength to stand there and tell their story (often without notes, something I cannot do). As I see a person living with dementia in a care home trying to regain mobility after a broken hip, I learn about determination. As I read a book, a blog, or a social media post from a person with dementia who is laying bare their personal experiences, I learn more about living with dementia than I ever could from a textbook. As I see someone managing a few mouthfuls of food, and breaking out into a satisfied smile that they’ve outwitted dysphagia for one mealtime, I see a will to go on living despite the obvious struggles.

When my dad's life started to change, which in hindsight was when he began developing dementia, I had no idea we had 19 years ahead of us. As every year went by, we just tried to make the most of whatever situation we found ourselves in and give dad the best quality of life possible. I certainly don’t think we always managed that, and I dearly wish I’d known then what I know now.

Did my dad live well? Yes sometimes. Did he suffer? Yes sometimes. But when I reflect now, the fact that it’s a rainbow I gravitate towards, feeling an affinity with the brightness rather than the reducing curves, reminds me that although dad is gone we lived those 19 years together, and for all their ups and downs there was a beauty in the love that bound us together and that shines on.

Until next time...

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook

The ‘stages’ of dementia

I had a very refreshing conversation recently with someone running a care company about the 'stages' of dementia. In this person's view, the way in which the medical model defines dementia by different stages isn't helpful for a more human understanding of what dementia really is and how it progresses. Unsurprisingly, I agreed.

The stages of dementia are generally defined as follows:

Mild/Early Stage: Characterised by the onset of a range of dementia symptoms – these could be anything from memory loss to confusion. I describe some common dementia symptoms in my blog post ‘What is dementia’. This is generally considered to be the stage at which dementia should be diagnosed.

Moderate/Mid Stage: Symptoms experienced in the mild/early stage are increasingly severe, and changes in behaviour can become more marked and difficult to cope with, both for the person with dementia and those caring for them. If a person is diagnosed at this stage, it’s considered by many medics to be a late diagnosis.

Severe/End Stage: This stage is characterised by further deterioration of previous symptoms, but is particularly marked by physical frailty – for example the person may become immobile, incontinent, have swallowing problems, experience weight loss, be at an increased risk of infections, and have severely limited or non-existent verbal communication.

I've actually never been a fan of compartmentalising, which is how I see the concept of stages in dementia. For me it's fraught with problems for the following reasons:

1. No two people experience dementia in the same way, even if they are diagnosed with the same type of dementia (and there are over 100 different types of dementia).
2. Dementia is notorious for giving a person good days and bad days, so in the staging model a person could appear to be mid stage one day and more early stage the next day, making staging very unreliable as a concept. This is even more applicable if the person has other conditions, alongside their dementia, which can fluctuate.
3. Severe/end stage dementia is often confused with end-of-life, which would be encapsulated within it, but in reality a person could fit into the severe/end stage category for far longer than a few days, weeks or months. Technically my dad would have been severe/end stage for at least 6 years, but in the earlier part of those 6 years his dementia manifested itself in a way that meant he bordered both moderate/mid stage and severe/end stage. This only serves to further highlight the shortcomings of viewing dementia through a rigid staging model.

What is immediately obvious to me is that given the complexity of dementia, referring to stages has the ability to drastically mislead care professionals and families, and could, at worst, affect decisions about care and support that may adversely impact upon the person with dementia. The concept of stages also encourages comparisons to be made about people who technically fit into the same stage, but are in fact completely different in how they are experiencing their dementia and reacting to it, which can only make the minefield of care and support more baffling.

Looking at dementia through the prism of stages destroys concepts like individuality and being person-centred, because it assumes all people who are living with dementia are one homogenous group, which they most definitely are not. I also feel staging has the ability to affect whether a person receives positive care and support throughout their life with dementia – for example, would an individual considered to be in severe/end stage dementia be offered as many positive care and support options as a person in 'moderate/mid stage' dementia? They certainly should be, but I suspect that the association of end-of-life with severe/end stage dementia might restrict more positive care and support because the person is seen as being less in need now that they are coming to the end of their life (which as I've already pointed out in my dad's case, can be far from true).

Staging also has the ability to dampen hope, which concerns me greatly. When I talk about hope, I’m not talking about notions of a cure for dementia tomorrow, or unrealistic expectations for a person's recovery from having significant symptoms of dementia to being back to their pre-diagnosis self. Hope, for me, is about giving families and professionals the drive and determination to make the life of the person with dementia happy, fulfilled and reflective of everything that person enjoys, with a massive emphasis on living in the moment and enjoying the good days.

Mentally that is difficult to align with the stages of dementia, because again, the concepts associated with progressing from one stage to another are inevitably likely to cause those around the person to lose a little hope, perhaps feel deflated, blame themselves for not doing more to keep that person at the previous stage for longer, and enhance the feelings of loss that are very common for families and family carers.

Given the negative connotations regarding the stages of dementia, it’s all the more unsettling that many families I’ve known, both personally and professionally, have been encouraged to become very focused on the stages of dementia, when in reality the juncture that their loved one has reached with their dementia at any given time isn’t what is important. Encouraging families to focus on what is possible, what their loved one can do, and how they can provide optimum care and support is far more helpful.

Perhaps even more worryingly, I’ve known medical staff who use the staging model to justify recommendations or decisions about care that families can often feel compelled to agree with because they’re being told that their loved one has reached a certain stage of their dementia. When my dad was immobile, incontinent and living with dysphagia (swallowing problems – more information here), we met doctors who questioned his quality of life and predicted his imminent demise due to his end stage dementia. Without a family to advocate for what he could do and did enjoy, he would have been compartmentalised in a way that effectively wrote him off as a human being.

I’m not in any way seeking to deny that dementia is characterised by deterioration and is terminal, but I also strongly feel that an antidote to the concept of staging is long overdue. For me, this would simply be:

See each person with dementia as an individual in their own right, and if you must assess them, assess them in the context of the moment in time when you are assessing them, keeping a completely open mind as to what the rest of that day, week, month or year might bring for that person. More than anything the person with dementia needs appropriate care and support, not a misleading label.

Or to put it another way, in the words of Helga Rohra, a lady living with dementia:

“The faces of dementia, rather than the stages of dementia.”

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook 

Remember me

My dad's legacy

Since 2012, this slide is how I have finished many a presentation at a conference or event. It's a simple philosophy, but a highly effective one at helping audiences remain grounded in the most vital aspect of any dementia-related discussion – the need to remember the person.

 

Remembering the person one of the topics of this year’s World Alzheimer’s Month (or World Dementia Month as I would prefer it to be called). For me, not a day goes by when I don't remember my dad, either through my personal reflections or through my work. I find that keeping my dad's memory alive, and helping others to learn from our experiences, is not only extremely cathartic but an amazing opportunity to help others that is really unlike anything else I could possibly do with my life.

 

I am mindful, however, that for some people whose loved ones have passed away having lived with dementia, remembering those relatives can be an acutely painful experience. We all experience dementia differently, and observe our loved ones through our own unique vision of them; for some people the pain, heartbreak and sadness is all they see and all they can remember.

 

Whilst I never deny the difficulties, sadness and heartbreak that accompanied my dad’s life with dementia - and actually frequently find that people would rather hear about those elements than the positives - it is the more positive aspects of my dad's life and care that I feel potentially offer the greatest insight, not least because despite all the awareness raising work that has happened around dementia, negative perceptions still outweigh positive ones.

 

For people whose loved ones are living with dementia now, if the positive messages don’t reach their ears and eyes, how are they to feel any hope, any sense of being able to live in the moment, and any way of appreciating how there are positive aspects to be found and enjoyed, if only you can find them and capture them, for however long they last?

 

Me and my dad

Without having those positive influences, so many families feel bereft, and often some family members will walk away from the person with the diagnosis. This leaves any remaining relatives to manage as best they can, and for the person with dementia to be condemned to feeling as though they’ve done something wrong. It’s no one’s fault that they develop dementia, but sometimes human emotions can be strangely mercurial in difficult circumstances.

 

I always feel immensely sad when I read about or talk to people who are really struggling to remember their loved one with dementia while that person is still alive. People sometimes hope distance brings closure, but if someone has been an important part of your life they can’t just be airbrushed out. Not everyone feels a natural inclination to stand by a loved one after a diagnosis of dementia, or indeed even just keep in touch, but some of those people perhaps just need a bit more support to see the difference they have the potential to make.

 

In my view, as networks, communities and societies we all have a responsibility here, because while the negative tidal wave of perceptions regarding dementia continues, it proliferates myths, intolerance and stigma, not to mention creating divisions that often wound people deeply, long after their loved one with dementia may have passed away. 

 

So, if you only do one thing this September for World Alzheimer’s Month, make it to put in that phone call, or write that letter, or make that visit, that says you haven’t forgotten a person you know who is currently living with dementia. And if you’re in the position I’m in with my dad and the person you loved is no longer here, think back, find that positive moment and tell people in your networks about it. 

 

We all have the potential to be the change we want to see, and from the smallest actions the greatest difference is often made. 

 

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook 



Reflections on 2014

So, the end (well nearly the end) of another year. 2014 has truly flown by for me – a whirl of speaking engagements, writing assignments, teaching, advising, assessing  and supporting. 

Picking out highlights is always tough. Sometimes the most special moments come and go without being linked to a specific event, they just ‘happen’ when you meet someone and get into a conversation, or read a tweet or an email, but in true end-of-year style I’m going to try and pick out some of my favourite memories from the last 12 months. 

In no particular order here are five of my 2014 highlights:

1)      Film for Care England 

It was an honour to be asked to make a film for Care England. Partly because I was in illustrious company, with some true ‘heavyweights’ of social care being invited to contribute, but mostly because it was an amazing opportunity to talk about some of the aspects of social care that are important to me, and to direct specific issues towards care providers and policy makers. 

My dad’s 9 years in care homes has left me with an abiding desire to A) celebrate good  care (my dad had some amazingly good care) and B) work to improve poor care practices (which sadly my dad also experienced). Whatever the rights and wrongs of how residential care is provided or funded, every single individual receiving it deserves care that is consistently outstanding. 

 

You can view the film here: http://www.careengland.org.uk/beth-britton-interview

2)      Interview for The Guardian 

Given that I’m someone who is used to doing the interviewing, rather than being interviewed, it was an unusual experience to be on the other end of the questioning! The feature charted my life with my dad, and talked about some of the work I’m doing now, including with CQC. 

It also helped to bring my D4Dementia blog to a new audience, and contained information that I hope was helpful to readers, including my time honoured advice on choosing a care home:  "I always say to people: go with your gut instinct. Don't go for something that looks like a hotel, or promises anything and everything. Go for something that feels right to you." More expansion on that advice is available here. 

Most importantly from my perspective, however, the feature stressed the independent nature of my work, which is something that I am fiercely protective of. 

 

You can read the interview here: http://www.theguardian.com/society/2014/jul/30/beth-britton-care-homes-not-police-states-dementia-blogger

3)      Standing ovation at the Alzheimer Europe conference 

As I’ve eluded to I speak at a lot of events - followers of the D4Dementia Facebook page or my Twitter feed will know this well. Over the last 2.5 years the topic I have found most difficult to talk about has, unsurprisingly, been my dad’s end-of-life care.  

As a result I’ve only spoken about it in depth and publically twice – at the National Palliative Care conference in December 2013 and at the Alzheimer Europe conference in 2014. I remember first writing about my dad’s end-of-life care in this blog post, and being in tears writing it and reading it back. With this in mind, you can imagine how difficult it was to speak to a large group of people, but the reaction from the audience at the Alzheimer Europe conference was so memorable it warranted a blog post all of its own. I will always be grateful to that audience for their support at the end of a very difficult presentation, so if you were one of those people in that room, thank you. 

4)      A day full of hope with BRACE 

Since I came into the health and social care world on a professional level, I have attended a lot of conferences. Truth be told, I have become increasingly fatigued with the endless regurgitation of information that these events produce. For me it has become an issue where we need quality to triumph over quantity. The lives and futures of people with dementia and their families are too important for progress in how we inform and educate to be so achingly slow and uninspiring.

With that in mind, easily my favourite conference of 2014 was BRACE 'Dementia: Hope for the future'. BRACE hold a very special place in my heart. They gave me my first ever speaking engagements in September 2012, invited me to be part of their Question Time panel in 2013 and subsequently made me an Ambassador. Being involved in the planning and delivery of ‘Dementia: Hope for the future’ was another highlight in our on-going relationship. 

This ‘mini conference’ had a strong local focus and offered lots of practical information and advice. It also covered national and international issues. All the major areas of dementia care were represented – Dr Peter Bagshaw covered primary care from the point of view of a GP, social care was represented by Mike Hennessey who is a director at Bristol City Council, secondary care and research was covered by Dr Liz Coulthard who is a cognitive neurologist, consultant senior lecturer and clinical research team lead, and most significantly of all, the views of two people living with dementia – Chris Roberts and Hilary Doxford - and carers present and past – Chris’ wife Jayne, Tony Hall and myself - were present throughout the day. 

The fantastic feedback proved that this event inspired and influenced the people who attended, and I’m certain that they took away many actionable, positive messages and signposts for their professional and/or personal lives. Other conference organisers please take note! And a little heads up for 2015: there will be another BRACE event, so keep your eye on the BRACE website in the coming months.

5)      Training GP’s 

It was way back in 2012 that the idea of me offering training to health and social care professionals was first muted. 2014 saw my first foray into that area as I undertook a GP training session for the first time. 

I have come to realise that from a professional point of view nothing gives me greater pleasure or pride than being able to make a difference to frontline practice in a practical and personal way. Drawing on my own experiences with my dad, and the experiences of the countless other people who are living with dementia and their families whom I have been privileged to meet, can have a really powerful and positive impact on any audience, including seasoned professionals like my group of GP’s. 

For 2015 I hope to grow this side of my work, in both health and social care, with my number one aim being, as it was when I began D4Dementia, to make a real and lasting difference to the lives of people who are living with dementia and their families. 

I could add many more highlights, but I will end by thanking each and every one of my readers, social media supporters, colleagues and friends who have made 2014 another very special year for me. 

This will be my last D4Dementia blog post for 2014. I’m taking an extended Christmas break to spend time with family, but rest assured that D4Dementia will return in 2015. The first D4Dementia blog of the New Year will be published on 19 January 2015. 

Until then I wish you all a very happy Christmas.

 

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook