The art of gentleness

Earlier this month I found myself in the honoured position of being a judge for a care awards event. As judges we had six categories to review, and there were some amazing testimonies of the care and support dedicated social care staff had given.

Amongst the many pieces of supporting evidence we reviewed, one short testimony from a lady who was 101 years-old made me think. She commented on how this particular care worker was, "Very gentle and caring."

It struck me instantly that we don't talk anywhere near enough about gentleness as a quality. It’s perhaps taken for granted, a 'given' that everyone providing care and support will be gentle, but gentleness has many facets, and can mean many different things to different people.

My idea of gentle and yours may be very different. How a sensitive person, who feels pain easily, might interpret gentleness is going to be different from a person with a high pain threshold who's always been pretty tough with themselves, perhaps from doing a hard physical job.

How health and social care professionals interpret gentleness is also going to vary immensely. Someone might believe they are being very gentle, when in actual fact the person in receipt of their care or support may feel very differently.

Sometimes gentleness is lost when time is short, there are multiple tasks waiting to be done, our minds are elsewhere, or if a person we are trying to help is verbally or physically unhappy with us. None of these are excuses, just the facts facing many professionals.

In training, gentleness is rarely mentioned. We talk about being person-centred, about compassion and kindness, but gentleness is mostly just assumed. Can gentleness be taught? If you mentor someone with the right aptitude and values closely enough, showing them what a gentle touch and gentle movement is, then some element of learning can happen, but you cannot physically become someone else’s hands so there will always be an unknown quantity of how gentle that person is actually being.

But of course gentleness isn’t just about the physical, however much it is associated with our actions and how we utilise our own physical strength. Gentleness in how we speak, behave and respond emotionally to a person is absolutely vital, but even less thought about than physical gentleness. A short, sharp response to someone, perhaps because we’ve answered their question numerous times already today, or an insincere tone in our voice can hurt someone who is emotionally sensitive.

Emotional sensitivity may exist because the person has always been predisposed to it or because they have an existing mental health condition. It may be a one-off because they are a having a bad day or it may be as a result of living with dementia. Whatever the cause, however, the need to be gentle on the mind is ever-present.

One of the wonderful things about us as human beings is our ability to feel acute emotional responses. Granted, it can be a double-edged sword, but it also opens up a world of feelings that is virtually limitless. When we provide care and support for a person, it’s crucial to be aware of everything about our approach, and consider not just what we say, or don’t say, but also how we say it.

Much like physical gentleness, we may not see anything wrong in snapping an answer, gesturing dismissively with our hands, or responding to a request with delaying tactics (for example, asking the person to sit and wait rather than address their need) – after all people do it to us and we don’t think anything of it. But these are not examples of gentleness, and the person on the receiving end may feel hurt, unwanted or unimportant.

Vitally, these feelings may not be visible to us, therefore we may not even consider that we’ve caused them. One of the great problems with the abandonment of gentleness is that its effects are often completely unseen. They strike at the heart, but the most sensitive people who experience them will often keep them locked in their heart. The result is as harmful as a lack of physical gentleness, just without the bruises to prove it.

I would urge everyone working in health and social care to consider what gentleness means to them. When you think you are being physically gentle, try and go down a notch or two more on the gentleness scale, being even more gentle than you have previously been, and see how the person responds – they may be more comfortable, happier and more secure in your company.

To be gentle on the mind, take a moment to think about your interactions. Draw breath before you dive in with whatever you were going to say or do. And never assume it is only women as the ‘fairer sex’ who need physical and mental gentleness. Men do too, particularly when they are more vulnerable as a result of living with dementia.

Until next time (which will be my 200th D4Dementia blog!)...

You can follow me on Twitter: @bethyb1886

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Dementia takes... and dementia gives

The start of a new year is a time that many people find themselves in a reflective mood, and I have more cause than most to feel that way as 2016 kicks off.

As some readers may know if they follow me on social media, I became a first-time mum last November.

A very proud mummy to a very beautiful daughter, Sophie Rae, born 21 November #totallyinlove pic.twitter.com/gUdhBHlWww

— Beth Britton (@bethyb1886) December 4, 2015

Parenthood opens up a whole new world, and inevitably makes you think about family life in a totally different way. Amongst the flurry of people eager to meet the new addition, you inevitably think about those who will never meet your child, and for me the person at the forefront of my mind is of course my dad. 

In the film I made for the G8 Dementia Summit I said of dad’s dementia: 

"It’s robbed him of opportunities that, obviously, now he will never have"

When I said this I was particularly thinking about potential future grandchildren. My dad loved children, and would have adored being a grandparent. The look on his face had he had a newborn grandchild placed in his arms is one I can picture vividly in my imagination, and I feel a huge sense of loss that I cannot experience that in real life.

Dementia has robbed us of that opportunity, that moment that would have become etched into our family history and captured by camera to preserve forever. The reassurance that comes from feeling dad's constant presence is a consolation, but it doesn't replace the real thing and never will. For that I hate dementia and I hate the fact that by developing it, dad's life was limited and, in my view, ended before its natural conclusion.

In the midst of those feelings it's hard to see positives, but they are there. Dad's legacy is one our daughter can learn from and be proud of. Dad's life with dementia left a story for me to tell that has much to inspire an enquiring mind as it grows and develops, and nothing will make me prouder than having our daughter in an audience one day when I'm speaking at a big event. I hope that even if she doesn't want to follow in her mum's footsteps in her working life that she will see the good, the kindness and the love that goes into what I do every day.

None of those things will replace learning from my dad's wisdom or having his cuddles, but she will come to know and appreciate everything that made him such a special man. In that way, dementia gives a little - it gives her lessons to learn, kindness to emulate, and a foundation to lead her life embodying the qualities my dad so admired and strove to teach me every day - humility and respect.

Since I would give anything to be able to introduce our daughter to her maternal grandfather, it makes me very sad to think of the many children that could be part of the lives of their older relatives and aren't. Without any reservations whatsoever I would have ensured our daughter was part of my dad's life during his years with dementia, including taking her to visit him during the nine years he spent in care homes.

I am certain that the interaction between the two of them would have been magical. Children don't judge people with dementia in the way that adults often do. Babies in particular have an innocence and a vulnerability that could never threaten, intimidate, or make a person with dementia feel inadequate or less of a human being. There is so much that we as adults could learn from the unconditional love and trust a tiny baby gives us, and use those lessons to impart the aforementioned qualities into our interactions with others, particularly people who are living with dementia.

My memories of my dad, and the many things I learnt from him both before and during his life with dementia, will undoubtedly influence the kind of parent I am and will grow into being in the years ahead. I can't help feeling that those lessons belong in some way, shape or form in parenting classes - proof, if it were ever needed, that intergenerational learning and intergenerational work in dementia awareness has never been more relevant, or more needed.

Until next time...

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Humanity in care - The role of touch

One of the most controversial elements of care provision is touch. It has a discomfort associated with it for many professionals, and even family members can have deep reservations about touch. It can be associated with abuse, both by ignoring someone's need for a comforting touch or the more commonly made association of inappropriate touch. It is also a topic that us famously reserved Brits don't really like talking about.

Touching another person can happen in a variety of situations and for a multitude of different purposes. It can be the basic things, like a clasp of the hand when you greet someone, a hug, a kiss on the cheek, ruffling hair or brushing against an arm. It can be touch that is necessary to help a person with something, like personal care or eating and drinking. Touch can be used to support, comfort or reassure, but it can also cause alarm or anxiety.

Touch has an important role to play in dementia care for the majority of people who are living with dementia. Understanding the individual preferences of a person around touch is vital to ensure that you don't dismiss a person who seeks comfort, or distress a person who feels that touching them is an invasion of their personal space.

Against this backdrop, why do we have such a deeply uneasy relationship with touch, given that it is a natural part of life from the moment we are born?

For professionals, a lot of the issues around touch are about what is appropriate - there is an underlying fear that any intervention must be proportional for a particular situation and justifiable to anyone who may observe and question. Yes, touch is sometimes associated with inappropriate behaviour and criminal acts, but those incidents are few in comparison to the vast majority of instances where touch is giving support, comfort and putting humanity into care.

Occasionally, issues around touch can be rooted in fear about older people and advanced dementia. A good example comes from a particular interaction between my dad and an out-of-hours doctor. It was late on a Saturday evening when the doctor called to see my dad for a suspected chest infection. During the necessary examination, the doctor refused to touch my dad, instead issuing instructions to remove clothing and position dad in a certain way. I was appalled - the lack of warmth in that doctor's approach betrayed everything that was wrong with his bedside manner.

Fear of touch can also come from concerns about protocols. I remember seeing care workers walking past and ignoring a lady who was crying out to see her husband. When I asked why they were not comforting her, they said they weren't allowed to. I was horrified and couldn’t just walk on by, so I stopped and put my arm around the lady. We sat there for a while, she was crying, I was trying to be soothing. I can't prove my intervention helped, but I can say that if I had been that lady I would have felt considerably less alone as a result of a comforting touch.

Sitting holding my dad's hand was a standard element of all the hours we spent together, as was stroking his head or his arms. However, not all family members feel comfortable about touching their relatives in this way. Visiting a loved one with dementia can bring with it a raft of emotions, and as much as we don't like to talk about some of the more uncomfortable aspects, for some people this can include feelings of revulsion, of not wanting to become 'dirty' or 'catch' something. In short, not touching can be method of protection for some individuals.

At the other end of the scale are family carers, who find themselves thrown into an unfamiliar role that is inevitably going to involve a lot of touch. Having to cope with an increasing need from their loved one for help with personal care can be hugely difficult. Any care that involves touching intimate areas, such as changing incontinence pads or bathing, can be especially problematic, and even more so when the relationship is between a child and a parent, and where the two people involved are of the opposite sex.

So how do we become more comfortable about touch, and the vital role it plays in caring for people with dementia? 

A significant part of the answer to this lies within ourselves. Confronting our own reservations about touch is the first step towards feeling more comfortable about it. Reservations in relation to touching people with dementia can often be rooted in stigma - one of the most astonishing things I ever heard was the idea that somehow you might 'catch' dementia from touching someone who is living with it. Perhaps that is what that out-of-hours doctor was afraid of.

As a family member visiting a relative who is living with dementia, engaging in practical activities that may naturally lead to an element of touch - in terms of guiding or assisting the person with dementia - can help to make touch feel like the normal part of life that it is. If you are a family carer having to undertake increasingly personal touch-related care, knowing that you are doing things in the right way (for example techniques for moving and handling, washing and dressing etc) can often help to reassure the carer. That guidance could come from a district nurse or other qualified health or social care professional.

For professionals, I think touch will inevitably remain a difficult area. Some people can naturally incorporate touch into their care provision, and so long as that is done in a way that the individual receiving care is comfortable with, then it is a win-win for all. Learning to gauge that comfort level takes a degree of skill and experience, and guidance from other members of the team.

Most importantly though, it is about communication with the person you are caring for and observation of their needs and reactions. It's about being adaptable, and not assuming that what was ok yesterday is ok today or tomorrow. It is also about establishing relationships through continuity of care and reflecting on what is going well and what could be done better. 

In the end, touch is a human reaction, and hugely associated with our emotions. It is part of who we are, and as such it has to be part of the care we provide.

Until next time...

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15-minutes of shame

As a light was shone, yet again, on the huge inadequacies within our home care services as the issue of 15-minute visits hit the headlines, I decided to time my morning routine. Just how much could I as an able-bodied thirty-something, fairly fit and known to be someone who is constantly on the go, get done in 15-minutes?

Well, the answer was that I couldn’t get out of bed, make a cup of tea, cut, toast and butter my breakfast bread, use the loo, have a wash and get dressed within my 15-minutes. Something had to give for me to make my target, in fact quite a lot had to give in the end, as I like a shower rather than a quick rub over with a damp flannel, I needed to blow-dry my hair, and we’d run out of butter for the toast, so I had to pop to the shop.

It will come as no surprise to my family that it took me more than 15-minutes to get ready for the day ahead, but I hope it provides a sobering thought for anyone who believes that 15-minutes is long enough to fulfil the care needs of an older or disabled person.

This may be a person who will take most of the 15-minutes just to be helped to get out of bed. They potentially then have to choose between having a hot drink, something to eat, visiting the loo or having their incontinence pad changed or catheter checked, having the sort of wash that they would want (imagine never having the chance to enjoy a bath or shower because there is no time to help you with that), getting dressed and having their medication. Even something as simple as a hot-water bottle may not be filled in time to help keep you warm.

All that is before we even get onto the personal interaction (a chat in other words) that so many vulnerable and isolated older people crave, or the care worker addressing any unexpected problems of a personal or domestic nature (health problems, heating breakdowns or water leaks for example – things that cannot be ignored as they could put the person in danger). You cannot possibly even begin to tackle all of these needs within a 15-minute window – it is degrading to the person who needs care to even try, and insulting to the care worker to expect them to hit that type of target.

We need to understand that care isn’t a luxury. It’s not a Gucci handbag or a Ferrari parked on your driveway. It is the most basic, fundamental thing that we all need. Most of us take care for granted because we can care for ourselves without any assistance, and then we have children and naturally find ourselves caring for them without giving it a second thought.

Imagine trying to give a baby all of the care it needs in the morning within a 15-minute window. We have maternity and paternity leave not just so that parents can bond with their child and establish their family, but because that child will need a lot of care. Many adults need similar levels of care and support, in a different context of course, yet many councils believe that it is achievable within 15-minute timeframes.

Our social care system is broken at the point in which we place a stopwatch on care, and why is that stopwatch there? Time is considered to be a useful way in which to price work, and the price on care is being continually squeezed. Public money either isn’t available, or hasn’t been made available, to fund the increasing care needs of our ageing population who are living longer but with far more complex long-term conditions. Even most people who privately fund their care do not have a bottomless pit of money and are still subjected to 15-minute care visits.

I fear as a nation we simply do not understand what care involves. The complexities of it and the fact that it cannot be rushed. We don’t place enough value of the importance of human interaction and the joy and comfort that it can bring. We don’t see care as an investment a compassionate society should be making, but rather see it as an annoying drain on resources that must be cut back to the bone. We bypass basic human rights, we tolerate the fact that it is undignified and lacking in compassion, and ultimately ignore the reality that it’s dangerous to try and provide care within 15-minute windows. We effectively treat prisoners better.

Yes social care needs more money, and sadly I don’t hold the purse strings, but it also needs an overhaul. Councils, commissioners and care agencies need to look at themselves and be honest – are they really proud of the work that they do? Can they achieve what they expect the average care worker to achieve in 15-minutes, and have they ever put themselves into the shoes of the person needing care?

I challenge you – time yourself. How much can you get done in 15-minutes that involves your personal care, basic nutrition and hydration, and caters for your need to be kept warm? Then consider how mobility problems, reduction in your sight and/or hearing, or any other medical problem might affect your ability to fulfil those needs. Then factor in having someone to help you so that you can overcome the limitations your body places on you. Then check your watch. I guarantee that you will need far longer than 15-minutes to achieve this.

Until next time...

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A good end-of-life

Given our aversion to talking about death and dying, the idea of a good end-of-life isn't something that has been widely debated. Yet for people who are diagnosed with a terminal disease, like dementia, knowing what would represent a good end to their life, when that time naturally comes, is pivotal to providing the care that they and their family deserve.

To me, there are two key points. Firstly, the natural element. One of the many issues that has arisen from the use of the controversial Liverpool Care Pathway (LCP) in the UK is the fact that many families believe that their loved ones were put on this pathway before they were ready to die. Prior to my father’s end-of-life, I had fretted for years about how we would know when his time was coming and what it would be like. Having now lived through that experience, I understand the crucial differences in a person’s condition that can provide a clear indication that they will soon pass away.

Given how often care professionals see people in the last stages of life, it seems extraordinary that anyone would misjudge this situation. Of course as we now know, the LCP has become tainted by suggestions that it was actually used to hasten death, free up beds and save money. Indeed, with hospitals having been given financial incentives to put patients onto the LCP, it is clear that the whole premise of trying to do good for patients at the end of their life has become lost in favour of very dubious motivation.

Having established that someone is naturally dying before implementing any specific end-of-life care practices, the second most important element is ensuring that their end-of-life care is exactly what all of their previous care should have been – person-centred, compassionate, dignified and respectful. One of the reasons I wrote so candidly about my father’s end-of-life was precisely because I felt that he had what I would describe as a good death. The manner in which he was cared for, and we were cared for as his family, is I believe an example to everyone.

Clearly we were fortunate in being able to find my dad a bed in a care home that were prepared to look after him for however long he had left. It is likely to be far more difficult, and potentially impossible, to provide the same experience in a hospital. Hospices are wonderful, but many are not prepared to admit people who have dementia due to concerns about how they would manage the disease.

In truth, these concerns are generally not as great as hospices might imagine. Someone who is living with dementia and nearing the end of their life is unlikely to be disruptive, aggressive or exhibiting other behaviours that they could find difficult to cope with (for example walking). Communication difficulties are likely to be severe, but I would expect hospices to have extensive experience in coping with these given that medications and the effects of all kinds of terminal diseases are going to affect communication for many of their patients.

As we all know, however, even if more hospices were prepared to admit people with dementia at the end of their life, there aren’t enough hospice beds to cope with demand. This then only leaves someone’s own home, a care home or a hospital as options. I’m sure that most people would want to be in their own home, but often primary care, out-of-hours care and palliative care services are not able to provide the help and support required. Having a family who can care for you is an advantage, but they will undoubtedly need some help from health and social care professionals within the community, and most experts in palliative care are already overstretched.

Our experience of care homes is that most did not want to take my dad when he was languishing in a hospital bed with extensive needs, so I count our blessings that one home took a very different view. For people who are approaching the end of their life and currently living in a care home, the experience can often be that the home become fearful of providing palliative care, and will therefore call an ambulance to take the person to A&E when severe pneumonia, UTI’s or other grave health problems set in.

In theory, care homes should be well placed to provide end-of-life care in an environment that is far more homely than a hospital. To do this, however, requires liaison with other health professionals (GP’s, specialist palliative care nurses etc), on-going, honest and transparent discussions with families, and agreement from all parties on a way forward. I believe that this is achievable (my dad's end-of-life care being an excellent example), but it would require specific training across the board to empower the professionals charged with providing this care, and much greater understanding and knowledge on the part of families. The Gold Standards Framework is an excellent starting point, but it isn’t mandatory for care providers.

I am certain that most people living with dementia, and their families, would not want to be in a situation where the person with dementia is taking their last breaths on a trolley in a busy A&E department, just because our health and social care services cannot respond to their end -of-life care needs more compassionately and appropriately. Likewise a busy hospital ward, as a result of being an inpatient for far longer than necessary and picking up numerous hospital-acquired infections along the way, is also not a good model of end-of-life care.

I think that the principles behind giving people a dignified death without painful interventions and excessive and aggressive treatments is in essence to be applauded. In the end that is exactly what my dad had and I can say that it was a peaceful and loving end for him. Clearly, however, what has happened with the usage of the LCP has often gone against all of these objectives, largely due to failure of implementation and the utterly inappropriate use of incentives to put people onto it.

Dementia is a progressive and terminal disease, and as such, ensuring people who are living with it can have a good end-of-life when that time comes is vital. As a society we need to start having honest, open discussions about what a good end-of-life really means and how that is achieved. We need to encourage and facilitate more widespread advance care planning, and ensure that health and social care is able to support people to have what they have said they want at the end of their life. For those without advance care planning in place, we need to ensure that their end-of-life care is as individual to them as possible, reflecting everything we know about them and any expressions of wishes.

We need to look at the alternatives to dying in hospital and how we fund those to ensure that no one is left worrying about monetary issues at such a sensitive time. And finally, for people who will inevitably die in hospital, we need to find a successor to the LCP that puts patients and their families at the heart of that end-of-life process to ensure that a good end-of-life is a reality for all. We will have succeeded when taking care of the dying is seen as a privilege for the living.

Until next time...

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Paid to care

When you go into any care setting, either as someone needing care or their family, you naturally expect that everyone who is looking after you or your loved one has been given all the skills that they need to provide that care safely, compassionately and confidently. What you might not realise is that aside from those people who you automatically recognise as being professionally trained and accredited (doctors, nurses, occupational therapists, physiotherapists, radiographers etc), those who assist them in providing care aren’t afforded the same professional status.

Although standards have been laid down by the Skills Councils for Health and Social Care, there is no robust system for ensuring that these are met, leaving the training and development of Healthcare Assistants (HCA’s) in hospitals and carers in social care settings (care homes, domiciliary care etc) very much open to interpretation and varying levels of implementation. In addition there is currently no defined path of career progression for those who seek it, and no professional body that offers registration for this huge number of care workers (unlike the RCN for Nurses or the BMA for doctors).

During my father’s time as a hospital inpatient, I would say that the majority of his care was provided by HCA’s. They were the ones charged with checking his vital signs, turning him to prevent pressure sores, changing his incontinence pads, and helping him to wash, eat and drink. Nurses were always on the ward, but clearly not enough of them for the number of high dependency patients, let alone with sufficient time to support their HCA colleagues.

Indeed, such were the tasks undertaken by HCA’s that many visiting relatives actually believed that they were part of the nursing staff. Yet HCA’s, despite the vital work that they do, clearly aren’t valued by our healthcare system. Without the professional standing of their nursing colleagues, HCA’s are effectively a cheap labour source for employers. Many are working on grossly over-stretched hospital wards leading to their duties creeping ever more into the realms of full-blown nursing. In monetary terms it costs far more to employ additional nurses than it does to ask HCA’s to complete some nursing tasks, but this is a dangerous game to play with patient’s health and wellbeing.

The situation is no better in social care, with carers in care homes and domiciliary care again providing vital support to often highly dependent vulnerable people under huge pressure, often inadequately trained or supervised and feeling very undervalued. Whilst some care providers constantly update and evaluate the skills of their workforce, others provide much less effective training for their staff, putting those who are receiving care at huge risk. Training doesn’t need to be complex, degree-style education (see this blog post), it just needs to be logical, natural and above all effective.

How this situation has gone on for so long is a mystery to me. We regulate health and social care services and demand high quality care, and yet that isn’t followed through with a framework that invests in and supports the very frontline staff who are charged with delivering this. I’m not suggesting that training and qualifications are the answer to all of our problems in care, far from it. On many occasions I had to educate both nurses and HCA’s on how to care for my father in aspects such as his swallowing problems, communication difficulties or behavioural issues. I do, however, feel that as patients and relatives we want to know that care provision is considered sufficiently important that it warrants a professional standing within our society, with the relevant standards and rewards in place, adhered to and monitored.

Currently, many HCA’s and carers working in social care earn less per hour than you might get as a cleaner or refuse collector. Whilst the latter two examples are important jobs, surely being in a position where you could potentially influence whether someone suffers pain, harm or ultimately lives or dies as a result of the care you provide is somewhat more important. I also believe that the role of HCA’s and carers in social care settings is one that their more qualified colleagues would also want to carry greater recognition and professional standing.

Nurses and doctors on busy hospital wards would be the first to admit that they would be lost without HCA’s. An effective care team cannot function without people who provide the basic care that is so vital to a patient’s recovery and comfort. Indeed, I would argue that the role of HCA’s goes beyond just providing care, but also moves into the realms of social interaction with patients, and provides vital opportunities to learn more about a patient or to spot changes that could indicate a problem or decline.

Looking at the role of HCA’s in that light, you suddenly realise just how important they are in a care team. So why don’t we train them to a higher, universal standard, give them professional recognition and pay them more money? The simple answer is because it’s cheaper not to. But does it represent good care, or indeed the model of care we want for ourselves or our loved ones? No.

In my opinion, for far too long those who provide frontline care have been marginalised, undervalued and seen as the workhorse of public and private sector health and social care. There has never been a more important time to change this situation if we are truly serious about delivering high quality care across all sectors. I believe most HCA’s and carers in social care would want this, their colleagues would support such a move, and most importantly of all patients and families would know that those looking after them at some of the most difficult and sensitive moments in their life are recognised and valued professionals within our society.

Until next time...

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Let's talk about dementia - Love

Welcome to the sixth of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 6 - The power of love

So many aspects of living with dementia are highly individual and personal, but one element, vital to all life, that I believe dementia never touches is the need to love and be loved.

Who doesn’t want to be surrounded by love, and when we are at our lowest it can be like life-support for the soul. To me, love is about what you do more than what you say, but that doesn’t mean you never tell someone you love them. Every time I saw my dad I told him I loved him. Sometimes he didn’t react, other times he said it back, smiled or motioned to give me a kiss. Indeed my last words to him were about how much I loved him.

Whenever I have listened to people in the earlier stages of dementia talk about their life, one universal theme has been how much love they have for those who are supporting and caring for them. Brimming with pride, modesty and huge love themselves, they readily recognise, acknowledge and show huge gratitude to those whose love helps them to get through each day.

When dementia advances, and maybe the words dry up, unspoken love takes their place. A look, a squeeze of the hand or a peck on the cheek that says you mean the world to me, thank you for everything.

Next post on 25 May 2013.
Until then...

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Reflections on a life lived and a man loved



My dad

It seems hard to believe that April 2013 marks two very sad milestones for me and my family. This month will see us celebrating my dad’s birthday for the first time without him here. Less than two weeks later, it will be the first anniversary of his passing.

We often say how ‘time flies’ – well the first year without my dad has vanished in tears, memories, hopes, ambitions, achievements and still an almost overwhelming sadness that he isn’t here to share in my life. Without my dad’s courage, strength, love, determination and inspiration I wouldn’t be writing, blogging, speaking, advising and campaigning in the way that I am.

I’ve written before about my dad’s legacy. My desire to share his story - our story - and use the experiences we had together to try and make things better for the many families who are supporting a loved one with dementia. More than anything I wish you could all have met my dad – although I doubt he would agree, since he was generally a very private man who never sought the limelight. To me he was an example of dignity, grace, humour, kindness and insight into what living with dementia means that no words I could choose will ever accurately sum up. You just had to have known him, and I was very privileged to call him my dad.

I would like to think that the dates we will mark this month as a family will be more about happy memories and reflections on good times than dwelling on what we were going through this time last year, which still haunts my dreams and brings tears to my eyes. In truth, however, I really don’t know how we will feel and how the emotions will affect us. Bereavement is a strange beast – it can allow you to live in relative happiness one minute, then plunge you back into deep sorrow, longing for the person you have lost and taunting you with that precious wish for just one more day with your loved one.

I have thought long and hard about what losing a parent means, and how you can possibly move forward after that. When half of the partnership that created you, dictated your DNA, and in my case gave me a happy, stable and loving childhood filled with cherished memories, is taken from you, my view is that it breaks a bond that can never be replicated or replaced. The love you feel cannot be transferred to someone else. Losing a parent leaves you with an emptiness in your life that you will never fill.

As anyone who has had a good relationship with their parents will know, from an early age you come to rely on their guidance and wisdom, the care they show you, the support they give you and the unconditional love they surround you with. No one else celebrates your successes like a proud parent, and no one is ready to pick up the pieces when you make mistakes like a loving mum or dad.

I feel immensely sad that my dad won’t be by my side to see me make my way in the world, develop my career, maybe get married. If I ever become a parent, he will never know the joy of being a grandparent, and sadly for any child I may have they will only be able to learn about my amazing dad from me, rather than having their own relationship with him.

What dad’s passing will never take away, however, is the memories I have of him, including the many happy times we had together during his dementia. It cannot take away all of his qualities as a human being that he shared with me through his parenting, and it will never take away my pride in him and in being able to call him my dad. His honesty, integrity, desire to help humans and animals alike, care and compassion is something the world needs far more of than it currently has.

They say only the good die young. Well my dad was 85, to me just a number since he certainly didn’t look it. Without the toll dementia took on his body I am certain he would have lived far longer, so in my mind he was a mere spring chicken at 85 years young. Surprisingly, maybe, I am not angry or bitter at his passing – I honestly believe that he felt he had given me everything I needed to go on in my life, represent and share his values and make him proud, and so he was able to take his rest.

Having dementia often meant huge struggles for my dad, and I will never truly understand how he bore them with such resilience and good humour. I would like to think that one of his coping methods was the hope that he had managed to inspire his youngest daughter to make sure that his experiences were not in vain. The promises I made to him in the days before his passing should have reassured him of that.

Although my dad was the catalyst for what I do, the beneficiaries are all of us. I hope that my dad’s gift to society will be greater understanding, support, insight, and ultimately improvement in the lives of everyone who he has left behind.

Until next time...

You can follow me on Twitter: @bethyb1886

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Be kind to each other

There is something incredibly simple, natural, easy to deliver, easy to comprehend, wanted, needed and with a huge power to heal that I believe everyone desires when they interact with a fellow human being. It’s almost indefinable, and yet when you are touched by it you know you have been. It can be momentary and yet be remembered forever. It costs nothing, and yet is priceless. It is called compassion.

When I say we all desire it, I would add that there are times when it is more important than mere desire, it’s essential. When we are at our most vulnerable, emotional, confused, in pain, frightened and fearful of the future, then it can be the ultimate medicine for bringing calmness and serenity, security and comfort. Such power should surely make compassion the cornerstone of health and social care, and yet sadly that isn’t always the case.

In the wake of the Francis report into the Mid Staffordshire NHS Foundation Trust, I heard one commentator say that compassion was unachievable in the NHS.  Another ‘expert’ claimed that he didn’t believe staff could be automatically expected to be compassionate, and concluded by saying that he didn’t believe you could teach compassion. So just how do we inject this vital quality of understanding, empathy and love into the way we care for people?

After the gross negligence found within Mid Staffs, and the appalling way it was allowed to happen, and continue to happen, until many hundreds of patients and families were affected in the most devastating way, it could perhaps be easy to conclude that all hope is in fact lost. Compassion wasn’t on the radar of the staff who allowed those patients to suffer, and die, in such horrific circumstances, and you cannot help but wonder how many other NHS trusts have harboured employees responsible for similarly negligent practices.

Certainly the systems of regulation leave a lot to be desired if such catastrophic failings can occur, and a fundamental re-evaluation is urgently needed of how we care for patients across health and social care. Organisational change will certainly result, in some form or another, from the findings of Robert Francis QC, but what about on a personal level – when did healthcare stop being about one human being genuinely and sincerely caring for another?

In my view care isn’t defined by how many pills you can give someone or how you can cut them open, however important both those approaches may be for an individual’s treatment and recovery. It is how you treat that person on a personal level every time you see them, every time they need your help (even if that is the twentieth time of asking in the last hour) and every time you go to them to give them something or do something for them, even when they may appear hostile or indifferent.

By putting yourself on the same level as the person you are caring for, seeing the world through their eyes, and adjusting everything you do or say as a result, you are being compassionate. You are putting their need to be understood and shown love above your need for speedy completion of a task. Ultimately it is about treating that person, who you’ve possibly never met before and may never meet again, as you would wish to be treated yourself.

I believe such qualities, if they aren’t immediately apparent within a person are, generally speaking, something that can be taught by those capable of setting that example. Simple observation of compassionate care in action, explanation of the principles above, role-playing situations, and finding that point within an individual that touches their heart and soul is what will show most people the need for a compassionate response within their work. Give them the freedom to express that compassion and voila, you have compassionate care.

Many of the structures within health and social care actually directly preclude the delivery of compassionate care. We put staff under huge pressure, give them unmanageable workloads, put paperwork before patients and fail to allow for the need to stop, take stock, approach someone with a compassionate attitude and give that person the time they need with their patient so that both the professional and the patient has had a meaningful interaction.

Of course I would be the first to acknowledge that some people do not have the ability within them, no matter how much time you invested in them, to be compassionate in their care. They are the people for whom the Francis report needs to herald a change of career. I have seen for myself (and wrote about it here), what happens when someone who is a registered nurse, and yet doesn’t have a caring bone in her body, is allowed to manage a care home of extremely vulnerable and frail people with dementia. The outcome of that decision was, ultimately, my father’s death. That situation isn’t just reserved for social care settings either. She could just as easily have been a nurse on a hospital ward – at Mid-Staffs there were many like her I suspect.

I don’t, however, feel that all hope is lost. I saw compassionate care given to my father on many more occasions over his 19 years with dementia than I ever saw practices or interactions that I considered unacceptable. Whether in care homes, hospitals, primary care or support services, we met some amazing people, dedicated and compassionate, doing the very best they could in often extremely difficult circumstances.

So what does the future hold for compassionate care within the entire health and social care systems?  I remember at a conference last autumn I was chatting with a colleague who pointed out that so much in society could be improved by simply showing kindness to each other. So simple, so vital, and so undervalued. Maybe in the wake of the Francis report those who control our health and social care services, and those who deliver that care on the frontline, will look again at whether what they do is compassionate and if it isn’t, why it isn’t.

Until next time...

You can follow me on Twitter: @bethyb1886

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Home alone

Imagine that every morning when you wake up, you are unable to get out of bed without the help of a carer. You might wake up quite early, needing the toilet or wanting a hot drink, but you live alone and rely on people who are paid to come and look after you.

You may wait many hours for help to arrive. It may never come if the home care agency don’t have enough carers on duty, or it may be much later than you expect because your carer has been delayed helping other people. In that time you may soil yourself, become dehydrated, or attempt to move around and end up falling, potentially breaking a bone and ending up in hospital, the shock of which, in someone who is elderly, could bring about premature death.

This is the reality that many single, vulnerable, elderly people with physical or mental health problems face every day. When care does arrive it can often be rushed, with the carer unable to give all of the help that is required. Imagine if you had to choose between being washed and dressed, helped to the toilet, fed or given your medication? You need assistance with all of those tasks, but your carer only has time to help with some of them, leaving you hungry or dirty as a result.

For many people who live alone, the carer that comes in to help them may be the only person that they see or speak to all day, and yet there is no opportunity for meaningful interaction. This is a system that is almost de-humanised, where the people who need care are effectively on a conveyor belt, and carers are operatives in a factory environment where output, rather than quality, is king.

Over the course of just a few weeks of home care you may see many different faces, each time having to try and explain (if you are able to) what you need and want. The turnover of staff is high because this is low-paid, often poorly trained work, where staff are put under immense pressure to meet deadlines, rush care, make stark and extremely unpleasant choices about what they realistically have time to do for someone, and where every shift leaves them feeling physically and mentally exhausted. Many carers often end up completing tasks in their own time, such are the time constraints enforced by their employers.

Morale is low, carers feel undervalued, and those who chose this type of work precisely because they genuinely wanted to care for vulnerable people feel utterly let down by a system that is run around two defining factors – the time on the clock and the money being paid to the home care provider.

Don’t run away with the idea that having home care is a cheap option for the most vulnerable, elderly citizens in our communities, because it isn’t. Universally however, most people would rather remain in their own home than move into alternative more supported accommodation or indeed into a care home. I would argue that everyone has the right to do that, whenever practically possible, and therefore in a compassionate society this should be supported, not just financially for those who need assistance paying for it, but from a cultural point of view as well.

The culture that defines how we care for older people in the UK is still one where we don’t value the person enough. As a society we don’t make provision for elderly people to exercise choice and be supported to do that, we cut corners because we think it doesn’t matter, we try to rush those who are naturally slower than they once were, we are incapable of seeing beyond ‘doing the basics’ and we ignore the need every human being has to feel cherished, loved, cared for, appreciated and listened to.

It can be very easy to blame the carers on the front line who have the day-to-day contact with our vulnerable elderly people, and there are certainly those within this line of work who should never be caring for anyone, least of all those in greatest need. But I believe that so much of what is wrong within the care system, and home care in particular, is about what happens within the companies that provide care and the authorities who commission it.

Many home care providers will say that they don’t get paid enough by councils (whose budgets have been squeezed in this area) to provide the care that people need. Councils will say that for the money they are paying, they expect far better for the people they are responsible for supporting. The real truth probably lies somewhere between these two viewpoints, but what I always find staggering in these debates is how the needs and the voices of the people who are on the receiving end of this care are generally never heard, and even more worryingly, those who are making the decisions often have no real appreciation of the situation that these people are in.

Of course we know of the cases, all too common, where home care has gone so catastrophically wrong that someone has died as a result of neglect. Yet all over the country, every day, neglect is happening, often not with immediately tragic consequences but with the slow-burn, saddening effect of reducing the lives of people who were once vibrant, hard-working, energetic and valued, into something that is a daily struggle to exist, a struggle that for many may not feel like one that they want to keep fighting for.

I couldn’t be a home care worker, simply because I could not cope with leaving people who needed me, at the same time knowing that if I stayed longer I let someone else down. It is an impossible situation. Home care is a vital resource that a compassionate society should value. Carers should be well trained, well paid and with enough colleagues to give our cherished elderly the help that they need in a time frame that they can cope with.

This is a job where you care for people with very high dependency and often multiple problems – it should be a profession with a far greater standing than it currently has. Ultimately care should be about helping people to flourish, live their lives well and feel happy and fulfilled. It should never be about losing dignity, being lonely, frightened, misunderstood, neglected and potentially an early death. If you offered anyone the ‘services’ in that last sentence, they would never sign up for them.

Until next time...

You can follow me on Twitter: @bethyb1886

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