Experiences of loss

With over 200 blogs on D4Dementia now, some of them approaching 7 years old next month, 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 loss.

Losing my dad

One of my most popular and shared blogs on D4Dementia is ‘End-of-life care: A very personal story’. I wrote the blog less than two months after my dad had died, and with my emotions still very raw I began the blog by saying:

"Planting up my father’s grave recently, I found my mind wandering back to our last few days with him, painful in so many ways and yet hugely comforting as well. Nothing is more important to me than knowing that we spent all day every day with dad during that time, that we were with him at the very end, and that he had what I would describe as outstanding end-of-life care."

I’ve been back to plant up dad’s grave many times since I wrote that blog, most recently last week to give it some spring colour as we marked what would have been dad’s 92^nd birthday. That was the first time our daughter could really participate in the gardening, and my feelings watching her digging little holes and helping to arrange the plants are something I can’t quite find the words to describe. It’s the closest she will ever get to my dad, which is a huge sadness as I know my dad would have adored being a grandpa and he never got that chance. The emotions may not be as raw now, but dad’s physical absence from our lives means that there will always be a missing piece in our family jigsaw. 

Loss from a distance

Very sadly I’ve had further personal experience of loss recently as my father-in-law passed away in South Africa, just 15 days before the 7th anniversary of my own dad’s passing and having lived and died from the same type of dementia – vascular dementia. Experiencing bereavement from a distance, having not been there to support my in-laws, as well as supporting my other half as he comes to terms with the loss of his dad, is the strangest mix of emotions, and the timing in particular has brought back many memories of my own dad’s passing. 

Distant bereavement means that you don’t have all of the practicalities to attend to, and you don’t feel remotely useful. Life is expected to carry on, and yet it isn’t the same and won’t ever be. Our parents shape our lives and the people we are – losing a figure so influential in your life is like having the rug pulled out from under you, and seven years on from losing my dad I have realised that you can never replace that carpet of stability and wisdom. All you can do is celebrate all that person gave you, and how they’ve helped you to become the individual you are.

Losing a new life

In my work life I draw on the strengths my dad gave me a huge amount, especially when dealing with any topic that involves loss. There is no denying the need to talk about advanced care planning, palliative and end of life care, loss, grief and bereavement, but while my personal experiences positively influence me as a trainer and writer they can also be painful to revisit in many different ways. 

One particular example of recent work, albeit ghost-written so I can’t signpost you to it as the author, was around how life story work can bring up thoughts and the associated feelings of bereavement(s) an older person experienced when they were younger. One of the most powerful ways I illustrated this was by drawing on the experiences of a lady I knew in her 80’s, who had heartbreakingly recalled a miscarriage as a young 20-something woman. 

At the time I never imagined this would resonate with me, but having had a miscarriage at 10 weeks last month I now know that an experience like that changes you. Other women older than me have told me they’ve never forgotten how they felt at the loss of the life they’d had growing inside them, and all I can really say is that in terms of pregnancy it reminded me of the title of a blog I wrote in 2014, ‘A loss of innocence’.

A loss of innocence not because I didn’t know miscarriages can happen, indeed my own mother had one before having me and I know many other women who’ve had miscarriages amongst my circle of family and friends, but because I will never view pregnancy, should it ever happen for us again, in the same way. As I said in my ‘A loss of innocence’ blog:

“Life is not and will never be as it was, and unlike many aspects of our existence this is something that we have no control over.”

For that lady in her 80’s recalling a loss of new life 60 years ago, as real then as the day it happened, is proof that living with loss is a lifetime’s work. Despite dementia taking many of this lady’s memories, it had left that one perfectly intact and able to torment her if the right care and support wasn't in place to help her overcome reliving those experiences whenever she saw a pregnant lady or a baby, having never been able to have children herself.

I’ve come to realise that any loss changes you, and perhaps the most important message about loss is that you don’t forget, and that’s ok. You can’t erase loss from your life however it has touched you; all you can do is find ways to acknowledge your loss and to live with it.

Until next time...

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

Without a song or dance, what are we?

One of the first blogs I ever wrote on D4Dementia, back in May 2012, was about music for people with dementia. It charted my dad’s love of music, how it became a vital communication tool in the latter years of dad’s dementia, and how I’d been so inspired by the effect music had on my dad that I trained to become a professional singer and completed 35 gigs in care homes.

I guess back when I was doing those gigs, I was effectively part of what a recently launched report on dementia and music calls “a multitude of different individuals and organisations” delivering live music in care homes. The patchwork picture painted by that phrase is very apt given the findings of the aforementioned report - from the Commission on Dementia and Music set up by the International Longevity Centre and supported by The Utley Foundation - that music for people with dementia is, “Defined by sporadic provision which is currently delivered only to the few.”

But why does that matter? Evidence has emerged over the last few years that shows a multitude of benefits associated with music for people with dementia, including:

• A positive effect on the brain by potentially helping with the recall of information
• Minimising distressing symptoms
• Tacking anxiety and depression
• Retaining speech and language
• Enhancing quality of life (through social interaction, improved wellbeing and decreased stress hormones)
• Having a positive impact on the person’s relatives, friends and care workers when they join the person in music-based activity
• Minimising anxiety and discomfort in end-of-life care

I recognise so many of these benefits from my personal experiences. Music gave my dad so much joy, satisfaction and pride. He would sing his favourite songs from beginning to end, word perfect and with precise rhythm and timing. Most tellingly of all, as I recounted in my 2014 Huffington Post blog 'The Power of Music Therapy', when dad could no longer hold a conversation, he could still sing a song.

For us as a family, singing dad’s favourite songs with him or humming or tapping out a treasured melody gave us a priceless connection with him. It was something we could all join in with (once I’d printed lyric sheets for those of us less well-versed with the songs!), smiling, laughing and sometimes shedding a tear together so bound up were we with the emotions of the music.

Indeed, it was the amazing effect music had on my dad during his years with dementia that contributed to the inspiration I had to begin D4Dementia. I wanted to share some of the positive aspects of my dad’s life, and music is right up there on the positive list. In the nearly 6 years since my dad died, I’ve urged everyone I’ve met who’s involved in dementia care and support to give music a try, and it has undoubtedly become easier to do that.

Initiatives like Playlist for Life have come to the fore, and with internet access improving yearly, being able to utilise digital music archives, watch music performances on YouTube, or obtain lyrics to support communal singing of favourite songs has made music more accessible than ever before.

It is extremely sad then that the Commission on Dementia and Music concluded that:

"Educated estimates suggest that high quality arts and music provision may currently only be available in just 5% of care homes." And, "There may be as many as 320,000 people with dementia in residential settings who do not have access to meaningful arts provision."

There is SO much more that needs to be done to support people who are newly diagnosed with dementia, all the way through to people being supported in end-of-life care, to access the musical intervention that is right for them. It could be anything from informally listening to CD’s or the radio, to playing an instrument, formalised music therapy sessions, live music performances designed for people with dementia, or groups like Alzheimer's Society's 'Singing for the Brain'. 

The report gives a list of recommendations which provide all of us with a focus for raising awareness of the benefits of music for people with dementia, or becoming actively involved in its provision. Indeed, friend and fellow writer, Pippa Kelly, has already blogged about a fantastic idea from soprano Lesley Garrett for the BBC to reintroduce ‘Singing Together’, a programme that once brought young people together around their radios and could now do the same for older people.

I for one wholeheartedly support this idea and hope it is just the start of many more innovative musical initiatives, simply because, as the report says:

“A life without music is unimaginable for many and yet for some people with dementia, opportunities to access music can be few and far between.”

Let’s all be part of changing this current reality so that no one who could benefit from a song or dance in their life is left without it.

Until next time...

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

Fixing dementia care in hospitals

Standards of hospital care for people with dementia made the news last week, with an investigation by the Alzheimer's Society showing shocking variations in the quality of care being given, prompting the charity to launch their 'Fix Dementia Care' campaign.

Given that this time four years ago my father was still alive, and had been the recipient of some extremely variable hospital care in the years prior to 2012, it is a source of huge concern and sadness for me that many of the problems we experienced continue today.

The Freedom of Information requests that provided the substance for the Alzheimer's Society investigation highlighted that people with dementia were:

•    Falling while in hospital

•    Being discharged at night

•    Being marooned in hospital despite their medical treatment having finished 

Whilst my dad thankfully never had a fall whilst in hospital, being discharged at night was something he experienced on almost every inpatient stay. The reason given in his latter years with dementia when he was completely immobile was that he needed transportation via ambulance, and this was most easily accomplished at night when paramedics were less busy. Never mind what dad might have wanted of course.

 

I suspect the fact that he was being discharged to a nursing home, with staffing 24 hours a day, was also a somewhat convenient excuse. It was, however, a horrible experience for dad - these events often came in winter, and being moved out into the cold night air when he should have been tucked up in a warm bed was, in my view, a particularly sadistic form of 'care' that would leave him upset, disorientated and confused.

 

Being marooned in hospital was also a harsh reality for dad - at one point he spent three months in hospital (despite being medically fit for discharge) whilst funding was arranged for the care home placement that his doctors said he needed. During this time dad lost half of his body weight and the NHS picked up a huge bill for his care - a no-win situation for all concerned.

 

Alongside collecting data from Freedom of Information requests, the investigation by the Alzheimer's Society surveyed people affected by dementia. They found that 92% of those individuals felt that hospital environments were frightening and only 2% felt that all hospital staff understood their needs. 

 

Reading this led me to reflect on how my dad might have responded to his hospital experiences. I'm certain he found the hospital environment pretty unpleasant, from the noise, smells and routines of hospital life, to difficulties in finding facilities like the toilet and having opportunities for stimulation, occupation or activity during the long days as an inpatient. Only on one particularly 'fortunate' stay in hospital could I honestly say that dad had a better experience - he had his own room and staff found him a CD player. We brought in CD's for dad and his mood changed completely. Simple stuff, but so effective.

 

Sadly, however, meeting staff who understood dad's needs wasn't the norm. During the latter years of dad's dementia when he had dysphagia (swallowing problems), hospital staff refused to allow him to have food or to help him eat it, mistaking his hunger cries for pain and writing him up for morphine. This was a 'mistake' that could be interpreted as covertly putting him onto an end-of-life pathway by administering a drug that he didn't need and could have shortened his life with an inappropriate dosage.

 

Furthermore, this 'mistake' was only rectified because dad had a family visiting him for eight hours a day, speaking up for him, and bringing him food and drinks and helping him to consume them. We would also assist him with his personal care - without that help a man who liked to be clean shaven would have begun to grow a beard. But what happens to people without this family support? Do they get inappropriately medicated, starved, dehydrated or left dirty, uncomfortable and neglected? The variations exposed in the quality of hospital care suggests that this is likely to be a reality for some people with dementia who are inpatients today.

 

Despite the many difficulties we encountered with hospital care, however, I don't want to paint a completely bleak picture. There were good experiences, staff who genuinely cared and understood what dad needed, as well as providing great support for us. This was particularly evident in dad's last stay in hospital when he'd been rushed in with an aspiration pneumonia. 

 

His care was excellent, with the doctors treating him taking a lot of time and trouble during their interactions with dad and in their care for him, alongside explaining things to us and giving us time. Our decision to seek end of life care for dad from a care home wasn't because we were unhappy with his hospital care, but rather that the hospital couldn't offer the homely environment or privacy we felt he needed as his life approached its final stages. 

 

So, how do we ensure that hospital care is a high quality experience for every person with dementia? In my view providing comprehensive dementia education for all hospital staff (which Health Education England are tasked with delivering) and making environments more dementia friendly will only go so far.

 

The root of much of what is wrong stems from compartmentalisation. Hospitals work best when a person is admitted with one condition and treated for that condition. However, people with dementia often live with other conditions alongside their dementia, and are usually always admitted into general hospitals not because of their dementia but because of infections (mostly notably chest and urine infections), another long-term condition (like diabetes, heart disease or asthma) that hasn't been well managed, or because they've had a fall in their own home or in a care home.

 

This was never more evident for us than when dad needed hospital care during the last four years of his life when he had dysphagia. Treating a gentleman with dysphagia who also had dementia and all the challenges that brings around communication was an alien concept for most hospital staff, with approaches varying from the starvation I mentioned above, to trying to force a tube through his nose into his tummy rather than orally proving food (a tube he promptly pulled out), and providing ice cream (that quickly melted) as a suitable 'thickened' food for him (which in reality was as liquid as the water out of the tap).

 

What is needed to combat these issues is more holistic, joined up care that sees each person as a whole human being and treats them as such regardless of how many problems they have with their health and which of these problems has led them to be hospitalised. This approach needs to be combined with a comprehensive 24/7 service that enables individuals to access the care and support that they need when they need it. People can become unwell on any day and at any time - prompt treatment and, crucially, the availability of care and support when they are ready to leave hospital, is vital. 

 

Furthermore, if hospitals that are underperforming (as highlighted by the Alzheimer's Society Freedom of Information Requests) learnt from the hospitals who are providing some of the excellent care that the Alzheimer's Society found, these huge variations in care would become a thing of the past. It heartens me that some outstanding care does exist, but I remain saddened that so little seems to have improved since my dad was living with dementia. Clearly we still have a lot to learn.

 

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 

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 

Inspiring end-of-life care

When I had my abstract, ‘End-of-life care: A very personal story’ accepted for oral presentation at the 2014 Alzheimer Europe Conference in Glasgow, I honestly never expected that it would receive a standing ovation from the audience. My presentation was included as part of the session on Palliative Care, and given the difficult nature of this topic I thought the audience would be small and very reserved. How wrong I was!

 

My presentation was inspired by my blog post of the same name published in 2012 that detailed my dad’s end-of-life care. The reason I chose to submit an abstract about it was purely because I feel that it is an outstanding example of end-of-life care being delivered in a care home setting, with the potential to inspire care providers as the very best of ‘best practice’. 

 

Whilst it may be intensely difficult for me to talk about, mostly because it brings back very vivid memories of great sadness at losing my dad, it is vital that professionals caring for people at the end of their life (whether those people have dementia or not) understand what good end-of-life care looks like, how to deliver it and why it is so important.

 

End-of-life care is emotive. It is something many of us instinctively steer clear of, and as I told the audience at the Alzheimer Europe conference, it is something I never really thought about until my dad needed it. What I also learned from other presenters in our session is that end-of-life care is something that many professionals aren’t very well equipped to deliver either.

 

There is a lack of training for healthcare professionals in end-of-life care, and training within social care settings is patchy and often inadequate. It’s not just about how to provide end-of-life care either; it also about how seeing someone through to the end of their life impacts upon the professionals who have provided that care.

 

The landscape in end-of-life care is complex, and full of stark realisations about facing up to our own mortality whilst providing the very best care to the person who is passing away. The overwhelming message from the Palliative Care session at the Alzheimer Europe Conference, however, was that despite the complexity of our emotional responses, the practical nature of end-of-life care is generally about simplicity and humanity.

 

For example, in my presentation I detailed the environment that my dad spent the last two weeks of his life in:

"Before dad’s arrival at the (care) home we had filled his room with his favourite things. Surrounded by his books, pictures and mementoes, with his much loved music playing and a lavender scent in the air, dad spent the last days of his life in bed, in his own cotton sheets and dressed in his own smart clothes. His bed faced a large window that looked out onto the garden where squirrels and cats played – a perfect scene for a man who had always loved animals."

I also spoke about the care he received from the care home staff, including a lovely soak in the bath, delicious puree food (up until the last 5 days of his life) and how he was regularly turned and changed, enabling his pressure sores to almost heal by the time he passed away. There was a special mention for the care home staff too:

"We could not have asked for professionals who were more caring, attentive and loving than those people were towards dad."

In these days of negative perceptions towards social care, and the people who work on the frontline in care homes up and down the UK, it is sadly very rare to hear good news stories, not least about end-of-life care, which is often fraught with disagreements and issues about palliative care being tantamount to ‘giving up’ on a person.

 

Yet good social care, and indeed good palliative care, can give immeasurable help and support to families when their loved one is nearing the end of their life. As I told the audience in Glasgow:

"An intensely sad time was made bearable for us as a family precisely because of the care given to dad. We felt huge relief that we no longer had to worry about whether dad was receiving the care that he needed, and the fact that he was so comfortable, calm and peaceful was testimony to that care."

What of the staff providing that care though, and their feelings? I could never have made this presentation without eluding to how they reacted to my dad’s passing, mostly because their humanity shone through in a way that for me should be celebrated:

"When dad was wheeled out of the home for the last time by the undertakers, the staff cried with us – for them, although losing a resident wasn’t a new experience, it was clear that every resident and their family matters. In that moment, their humanity might have ‘gone against’ protocol and practice, but it said so much about the care and compassion that underpins their work and which no amount of mandatory box ticking should ever be allowed to eradicate."

People who work in care jobs are human beings, with natural human emotions. Any attempt to turn them into robots who don’t have those feelings is basically asking them to remove the element of themselves that is most vital in providing the warm, caring, compassionate support that we would all want for our loved ones and ourselves.

 

That theme of humanity featured heavily in the list of the key elements of my dad’s end-of-life care that I concluded my presentation with, and that motivated me to write this blog. I would give each entry on this list equal importance and suggest that together they are viewed as part of a holistic package of end-of-life care: 

• Person-centred care
• Teamwork with families
• Attention to detail
• Well-trained and well-led staff
• Dignity and respect
• Kindness and compassion
• Personalised environment
• Time and patience
• Continuity of care
• Can-do attitude
• Multi-disciplinary team approach

These key qualities embody the simplicity I mentioned earlier, and also include one of the two main themes of the 2014 Alzheimer Europe Conference – Dignity. You would think that achieving dignity in the last days and hours of someone’s life is something that would happen routinely, but sadly not everyone is as lucky as we were as a family. 

 

I hope that the standing ovation my presentation received is proof that my dad’s story can inspire better end-of-life care for other people in the future, and that speaking about even the most difficult topics can be warmly received if you connect with people on a human level. And that is perhaps the most important message of all: we have great caring qualities as human beings that have the ability to change lives at every stage of life, even at the end.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook