Routine, routine, routine

With a New Year often comes resolutions to change our routines. Things we've always done, that perhaps aren't so good for us, are intended to be banished in favour of routines that are healthier or that we perceive are better for us in some way.

Routine is in sharp focus for me since becoming a parent - the deluge of 'advice' on the best routine for your baby can be pretty overwhelming, and we decided before our daughter was born that we were going to do things our own way, responding to her as the individual that she is. To this day, we still don't own a 'baby book' that attempts to 'train' our child like a mechanical doll!

It's this parenting experience that has inspired me to think about how routine is perceived for people at the other end of the age spectrum, and particularly people who are living with dementia. The majority of professional 'experts' seem to be in favour of supporting the person with dementia to retain their own personal routine - that is until the person needs inpatient hospital care, or indeed residential social care, in which case their routine is mostly thrown out of the window and replaced with whatever the institution believes helps them to run their services most efficiently.

Whenever I've been asked about routine, I've generally advocated for the person's own routine to be maintained and protected to give the individual continuity. As so much changes for the person with dementia, this seems a sensible way to help the person to remain grounded in something that feels familiar and that gives them the best chance of maximising their independence. Most people I know who are living with dementia generally say that their routine is vital to their sense of wellbeing and ability to cope.

But there is one very important caveat. Be guided by the person. As family carers, or health and social care professionals, we should never be so wedded to keeping to what we perceive is the person's routine that we become oblivious to the person trying to change their routine. Often, if a person with dementia begins to stray from their 'normal' routine, we at best look to guide them back to it, and at worst become so obsessed with the routine that we berate the person for not adhering to it and try to forcefully pull them back into it, regardless of whether this is what they want or not.

It's the routine. It's how it's always been. It cannot change. Ever.

Except that this is tantamount to trying to fit a square peg into a round hole. It doesn't work. Routine should never become a watchword for control. For some people routine is vital, for others less so, but regardless of how the person has historically run their life they are completely at liberty to change that now. Just because the person is living with dementia doesn't mean that they don't know what they want.

Living with dementia may mean that the person can't necessarily find the words to explain what they want, and through our bombardment of communication, questions and nagging, may become so worn down that they either just give in - which could lead to feelings of worthlessness or depression - or fight back, which is commonly labelled by the ill-informed as 'challenging behaviour' (a term I dislike immensely).

As individuals providing care and support, we have to have the courage, however hard it might be, to take a step back and ask ourselves:

•     What is the person trying to tell us?

•     Have the person's needs changed to a point that their 'old' routine no longer works for them?

•     Is there something about when the person wants to eat, sleep, wash or go out that is different because they are trying to respond to what their body is asking them to do? (We are not wired up to their brain or their body, and we cannot ever REALLY know what either is telling the person to do).

•     Does the person want to change their routine just because they can? For a person not living with dementia, this might be positively packaged up as an 'important life change', a 'New Year's resolution', a 'health kick' or some other such celebrated deviation from the norm. Why when a person with dementia wants to change things is the reaction so often to throw our hands up in horror and declare that this won't work and shouldn't happen?

So often I hear from families, or health and social care professionals, who feel that there must be something intensely wrong with the person for changing their routine.

·     Is this a sign that the person's dementia is progressing? Maybe, maybe not. What is it a sign of is the person wanting control over their life, of having the ability to follow what they feel is right for them and the confidence to do that. So not an entirely negative turn of events.

·     How can I stop this? It's a type of arrogance to believe that you can or should. To take away choice and control is to condemn a person with dementia to a life that disempowers them and is completely counterproductive to what you should be wanting to support, which is to enable the person to live as well as possible with their dementia in a way that makes sense to them.

·     What can I do? You can support the person to find a new routine that works for them. That may be one set regime that they like to follow, or it may be a movable feast where every day is a little different. Yes, that can be hard to predict and more difficult to support than the one fixed routine, but it's about what the person wants and needs and they are the only real arbiters of that.

Until next time...

You can follow me on Twitter: @bethyb1886

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Caring for carers

For many years I’ve thought of carers as the forgotten millions. As a family we certainly felt forgotten on many occasions during my dad’s 19 years with dementia, both before and during his years in care homes and his spells in hospital, and given what I hear at conferences, events, through my writing, social media and email, little has changed.

There is just one subtle difference though – I feel the voice of carers is becoming louder, more persistent and more difficult to ignore. Slowly but surely there is a movement growing in momentum, spirit and immovability that will, I hope, one day ensure that the needs, rights, knowledge and skill of unpaid carers is recognised and enshrined in the fabric of society.

If anything it amazes me that health and social care have for so long undervalued the role of people who care for a loved one, be they a family member, friend or neighbour, near or far, living with complex needs and long-term conditions or someone older and/or immobile who requires crucial daily living support. There is no archetypal carer – they may be young or older or anywhere in between. They will undoubtedly have a life of their own that they will often indefinitely put on hold. I guarantee the majority will be driven by love and devotion, but exhaustion and frustration will also play a big part in their life. What unites them all, however, is the need for far greater support and recognition.

Support is vital because you simply cannot be a 24/7 carer for what may be an unspecified amount of time before the cracks begin to appear in your own health and wellbeing, your caring suffers and therefore so does the person who you are caring for. When the carer breaks down and then needs care themselves, there is often no one to care for them and indeed no one to step into their caring shoes, meaning effectively two people become highly dependent on society.

Recognition goes hand-in-hand with support, because if a carer is recognised as a carer there is more chance that their needs will be met, hopefully avoiding that crisis situation. Recognition goes further than this though. It is about seeing a carer and the person that they are caring for as a joint entity, rather than seeing the vulnerability of the person needing care and totally ignoring how that vulnerability also makes the carer very vulnerable. Recognition is also about valuing carers – their knowledge of the person that they are caring for is vital for any professional providing healthcare or social care for that person. That knowledge must be fully integrated into the provision of professional care.

How we make this happen in relation to healthcare is part of the new NHS ‘Commitment for Carers’ – an initiative that recognises that the health service can and must do much better when it comes to responding and reacting to carers, their needs and their knowledge. It must be hoped that this ‘Commitment’ will forge a workable, long-term plan that will benefit carers, those that they are caring for, and the professionals who should be partners in that care provision.

Very close to my heart, of course, is how we support those who are caring for a loved one with dementia. Very early on in the focus on dementia, the Dementia Action Alliance (DAA) was born (I am a national member), and from that we now have the DAA Carers Call to Action (CC2A). The aim of the CC2A is to, “Ask the right questions, explore examples of good practice and find solutions to address the needs and rights for family carers of people with dementia.”

The fact that any of these initiatives exist at all is, ultimately, down to carers themselves. Despite being people with exceptionally busy, stressful and hugely demanding lives they have found time to speak to media organisations, effectively used social media to highlight their experiences and, perhaps most powerfully of all, have spoken out at many key events, often supported by fantastic teams from carers’ charities.

In the case of carers of people with dementia, this has often been through Dementia UK’s ‘Uniting Carers’ – a group that I am very proud to be a member of and very sad to see disbanding. Fellow members, alongside people with dementia, blew me away at last year’s Dementia Congress, and this year I was literally moved to tears hearing their often heart-breaking accounts.

Sheila Wainwright’s story in particular was something that a packed Congress hall of people with dementia, carers, health and social care professionals, business people and media representatives, alongside Care and Support Minister Norman Lamb MP, really needed to hear. Recounting her husband’s dementia, and the impact it had on both of their lives, Sheila told of the "Shear daily misery" of their life, how "No one" answered her questions, and that over the years "Many people came and went, and came and went" but there was simply no continuity of support for her or her husband.

Sheila admitted that she was, "'Planning how to end our lives before a call to Admiral Nursing Direct saved my life." Her husband eventually passed away in hospital after an agonising end to his life, with Sheila movingly recalling the actions of a nurse as her husband was finally at rest, "That sprig of flowers put on his chest when he died was one kindness I will never forget."

It can never be acceptable that we wait until someone’s death before we show kindness to their carer who has valiantly stood by their side as, in Sheila’s words, her husband, "Screaming and snarled, pooed in the shower and pushed it down the drain, lost the ability to walk and talk, and went from 13 stone to just 7 stone when he passed away."

Sheila said she felt bereft and bewildered. I had tears in my eyes from the pain in her voice and her story, and I know for certain that I’m not the only person at this year’s Dementia Congress who was similarly emotional. Although Sheila’s husband is at peace, the psychological ramifications of caring for him and all of the struggles that she faced live on two and a half years later. It is for Sheila, and everyone who walks in her shoes, that we MUST ensure that we care for carers.

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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Sense and simplicity

One of the many positive things to come out of the increase in dementia awareness is the focus on how we provide the best possible care for people living with dementia. The importance of training for everyone involved in dementia care has never been higher on the agenda, and there is a huge desire to equip people from all backgrounds with the skills and knowledge needed to enhance quality of life for everyone with dementia, but what does good dementia care training really involve?

So many people ask my advice on dementia care, not just from a personal standpoint but also from a professional and business point of view. My answer is always the same – keep it simple. I am not a fan of complex theories, extravagant ideas or novel concepts – everything I have ever seen work best for my father and numerous others living with dementia is simple, down-to-earth, logical care that focuses on the individual, their personality, passions and interests, keeping their past constantly in mind, living in their present, and giving them the best possible future.

Underpin that with strong bonds between the carer and the person with dementia, deliver that care with compassion, empathy, dignity and respect, and voilà – you have good dementia care. Nothing fancy, nothing ground-breaking, just the implementation of the obvious, or maybe it is only obvious to me because my father had dementia for so many years and during that time I saw some of the very best, and worst, dementia care.

Those who are living, or have lived, through a loved one’s dementia journey are often the best educators. We notice what others ignore, and having felt the whole range of emotions - and in my case seen dementia from the very beginning, through numerous stages and symptoms over many years to those final days of end-of-life care - you develop an acute sense of how to nurture someone through their dementia journey.

That feeling for dementia is what really needs to be communicated through modern-day dementia training – teaching the mechanical nuts and bolts of care is no longer enough. What does not need to happen, however, is for it to be packaged up in jargon. Carers do not need to be bombarded with new-fangled language to identify a simple aspect of good care. For example, at a recent event I spent the best part of half an hour listening to a very animated presentation on what amounted to continuity in care, where the people presenting the session managed to make the idea of having the same carer regularly looking after a resident that they had formed a bond with sound ground-breaking. Yet over 8 years ago, as my father was settling into his first nursing home, he developed a friendship with a particular carer who was then made his keyworker and remained as such until that carer left, just a few weeks before dad passed away. Not so much revolutionary as the simple application of observation and sense.

I sometimes wonder if that long-standing joke about common sense – that sense is in fact no longer common – actually has a lot of truth in its jest. I suspect that in this drive to be technological and futuristic many people feel that you can only successfully convey a message if you package it up to such an extent that you ask your audience to play a never ending game of pass the parcel. Where care is concerned, however, front-line staff simply do not have the time to unravel ideas – you need what you are being asked to do to be logical, natural and above all else, effective.

Caring for people with dementia can be a very rewarding job. When you understand how dementia can affect a person, why they do what they do and how you can make every interaction with them meaningful for both of you - whether you are passing their room, feeding them a meal, giving them a bath or playing a card game - work becomes pleasurable, the giving and receiving of care happens in an atmosphere of friendship and mutual trust, and a care home becomes a loving community of like-minded people all working towards common goals.

My advice to carers? I cannot stress enough the need to personalise everything that you do for a person with dementia, make it compassionate, and be dedicated in your application. Do this and you will not only serve the people who depend on you well, you will also have the satisfaction of knowing that you have wrapped up the life of someone vulnerable in a bespoke security blanket that brings with it warmth, protection and love.

It is not a one-way street, however. The best, most committed and caring staff can be worn down in hospitals, care homes or by care companies that do not appreciate the need to allow their staff to have the time to work effectively. Good care is never rushed care. Teamwork should involve everyone in looking after a person with dementia, from the person themselves and their family to every staff member. An inclusive care home, where everyone feels valued, whether they are a staff member, a person with dementia or a visitor, is a happy home. Finally, for any employer looking to give their staff the most effective training in dementia, remember those guiding principles of sense and simplicity. When both are commonplace everyone is nurtured and flourishes.

Until next time...

You can follow me on Twitter: @bethyb1886

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From care to catastrophe

Back at the start of D4Dementia I wrote about the importance of continuity of care for people with dementia. It cannot be over-emphasised just how beneficial this is, not only to the person living with dementia, but also their families and indeed people working as carers. The chance to form a bond with a person is what can give the greatest job satisfaction and leads, in turn, to the most compassionate and personalised care.

We were particularly lucky that my father formed a bond with a carer that lasted from the day they met to the day dad died – indeed this man even came to dad’s funeral. In the almost eight years in between, this carer brought such joy to my father’s life that it could honestly be said that dad was often more pleased to see him than he was any of us.

As a family we valued this carer’s input into dad’s life higher than any other professional we worked with, so imagine our heartbreak when a change in ownership and management at dad’s nursing home resulted in wholesale changes to the care structure. Suddenly wonderful staff who had delivered an excellent CQC report just a few months previously were now leaving, bullied, ostracised and driven away, initially we suspected for racial reasons before it became clear that whatever your skin colour or race, if you were well-liked you were not wanted.

What you soon discover as a relative, when you try to halt this tide of change, is that A) private companies can run care homes as a dictatorship rather than a democracy so long as they can keep the inspectorate happy, and B) that as a relative you have no say over what happens, CQC are reluctant to support you, and the only real option you have is to move your relative to another home.

In this case, having no say included having care plans made for my father without any consultation with or agreement from us, carers who knew my dad being forced to implement care plans that went directly against what they, and us, knew to be in dad’s best interests, and no care review for a year. Ultimately this led to a chain of events that resulted in my father being admitted to hospital with pressure sores and a catastrophic aspiration pneumonia that would eventually kill him.

You cannot force intransigent managment to answer your questions, you cannot change the dictates on your relative’s care, even though you know your loved one better than anyone else, and when you turn to CQC for help, you are left very disillusioned by the incredibly slow response, lack of transparency in their actions, and that fundamentally they seem very unmoved by so many vulnerable elderly people being at risk.

Add to this the loss of care staff who you have known since the day your relative moved into the care home, and whose work and reputation you would defend as both a relative of someone in their care and also as their friend, and you have a situation where you feel utterly helpless. No matter how many times you mull it over in your mind, you will never find a resolution to the fundamental question of why people with no knowledge or understanding of dementia, no concept of compassion or indeed a caring bone in their body, would wish to run a care home where the most vulnerable, sensitive and highly dependent amongst our cherished elderly live.

To see what had been such a happy home, where relatives, residents, staff and management worked together, pulled apart within a matter of weeks is something I will never forget. Not only did my dad lose the continuity of care that had added immeasurable quality and richness to his life over all those years, our time with him was blighted for weeks by on-going arguments, upset and disharmony. We lost friends, happiness and actually, in the end, dreaded visiting.

Having a loved one in a care home is hard enough for any family, but it is the bonds you form with staff, and the joy and comfort you see them bring to your relative, that make it bearable. There is no price you can put on that, and no agency that you wouldn’t beg for help to try and halt the tide of catastrophe. Tragically, having persevered with trying to change a situation we clearly could never change, we had actively begun to seek a new home for dad when, on that fateful night in March 2012, he aspirated on his own vomit five times, setting up a pneumonia that his body just could not fight off.

My advice to anyone going into the caring profession, be it as a carer, nurse or in a management role, would be don’t do it unless you can care about others as much as you do your own flesh and blood. If you are a manager, don’t be a dictator, don’t treat residents as a commodity, and don’t make the lives of their families unbearably hard. When staff are loved by residents and relatives it is for a reason; we know how hard it is to find these wonderful people, and how special they are, so listen to us. Finally, above all else, remember this: care homes are for caring, prisons are for punishment.

Until next time...

You can follow me on Twitter: @bethyb1886

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Continuity is key

Last week a story hit the headlines about how Jeanette Maitland’s husband Ken, who was living with dementia, had been given 106 different carers during the last year of his life. Mr Maitland, from Aberdeen, had been allocated two carers four times a day to help his wife look after him at home, but instead of regularly seeing familiar faces, the couple were confronted by a stream of new care givers, which would be baffling enough for most people but even more distressing when the person receiving the care is living with dementia.

Whilst the understanding of dementia has improved significantly in the last ten years since my father was diagnosed, the fundamental inability to grasp some of the most basic facts about this disease remain all too prevalent, and the point about continuity of care is one such example.

It cannot be overemphasised just how important it is for people with dementia to receive all, or at least the vast majority of their care, from someone (or a very small group of people) that they know and have clearly formed a bond with. As communication becomes ever more challenging, known and trusted carers become the best chance someone who is living with dementia has of articulating what they are feeling, needing and wanting, and having that care provided in a way that they respond well to.

Familiarity, warmth and trust between a carer and the person they are caring for also helps to remove fear in the most vulnerable people, promotes calm and wellbeing, and provides dignity and respect during the provision of the most sensitive personal care. It can also add some much needed love and laughter into a person’s life in the most difficult times.

In the case of my father, he experienced significant upset when he was admitted to his first nursing home some 8 years ago.  Our involvement as a family played a huge role in helping him to settle into his new environment, but ultimately it was a highly trained and intuitive nurse who spotted how dad responded particularly well to one carer, and then moved that carer onto dad’s unit just so that he could permanently work as his keyworker, that made the greatest difference. This carer became dad’s best friend, and as my father's dementia progressed, he became the voice dad didn’t have, spotting what he wanted and needed in the times we weren’t at the home, and crucially also providing a link between dad and his family during those periods.

Dad’s positivity towards this carer continued until the last time he saw him, two days before dad passed away, and proves how bonds are formed and never broken, no matter how much cognitive impairment exists.

That Mr Maitland was denied the chance to experience how continuity of care could have dramatically improved his wellbeing is shameful. Anyone actively involved in the care of a loved one with dementia quickly comes to appreciate how something as simple as having the same person regularly looking after their relative makes such a tangible difference, not only to the quality of life of the person with dementia but also the peace of mind that you feel as their family.

Sadly care workers are not valued as much as they should be in our society, and as a result it is often a profession where staff retention and longevity of service is at a premium. Mr Maitland’s experience may be an extreme example of how the system failed to provide him with even the slightest continuity of care, but it also represents the severe lack of understanding about just how vital this aspect of care provision is. The people with the skills to deliver such a specialised and personal service should be supported, and actively enabled, to perform their care giving with the same group of patients every day that they are at work.

At some point in the future I will post about the problems faced when you go from having such continuity to losing it, irrevocably. A bit like a divorce that neither party agrees to or wants!

Until next time...

You can follow me on Twitter: @bethyb1886

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