Wednesday, 19 December 2012

Christmases past and present

Christmas with dad
Christmas with dad
I think for most people Christmas is about the many traditions we each have for celebrating the festive season. For the last nine years our family traditions were modified to fit in with my dad’s life in care – this year will be our first Christmas without him, and to be perfectly honest I am really not quite sure what to expect.

Many people assume that visiting a loved one in a care home is hardly the ideal way to spend Christmas. I would admit it does take some adapting to – modifying your established routine can be a bit of an organisational and diplomatic challenge, eating two Christmas lunches (a small one with dad and then our main one with the wider family later in the day) is not ideal for the waistline, and you are in danger of spending the entire day rushing around to such an extent that you feel Christmas has totally passed you by, but I would not have missed those precious moments with dad for anything.

Our last Christmas with him came amidst the backdrop of huge problems within his nursing home (that I wrote about here), and dad himself was not at his best as he battled yet another chest infection. He struggled to eat much of his Christmas lunch and was entirely disinterested in his presents – in contrast to previous years when he demolished extensive 3-course meals and complained that he did not like his presents!

Our approach to Christmas for dad was always to make it as happy and festive as possible. We would decorate his room with traditional items that he was familiar with, fix his cards to the side of the wardrobe so that they did not mysteriously disappear, buy and wrap lots of presents (new clothes - since clothing wears out so quickly in care homes - and CD’s of much loved music were all staple presents), and arrive on Christmas morning, me resplendent in my Santa hat, with the camera and lots of festive cheer.

Our challenges were minimal, however, in comparison to the difficulties many family carers face when they are looking after a loved one with dementia at home over Christmas. For many carers Christmas is a time of isolation, and while their neighbours celebrate around them, 25th December will be just another day of relentless struggle and ultimately exhaustion. With so many services shut down for the holiday, Christmas can also be a nightmare time for getting help should your loved one become ill, or indeed be very frail and nearing the end of their life.

Even for carers who are more supported, many of the Christmas traditions can present challenges. For example some decorations can be dangerous if the person with dementia does not understand what they are, certain colours or flashing lights can cause upset, an excessively decorated or crowded dining table could lead to confusion, and even your menu may need to be adapted to take into account a loved one’s changing eating habits.

For most family carers, however, I think one of the greatest concerns can come from how visiting friends or relatives may react to your loved one’s dementia. Be mindful that they may need guidance to understand and support the person you are caring for appropriately. For example, it is not uncommon for people with dementia to forget how to open cards or presents – we coped with this by gently helping dad, rather than just waiting, or demanding, that he manage alone.

Of course whilst so many of us are focused on Christmas, is it also important to remember those people with dementia, particularly in care homes, for whom Christmas is not part of their tradition or religious beliefs. Their wishes can often be forgotten amidst the celebrations, and they can become even more confused or disorientated by Christmas paraphernalia that is alien to them.

Looking back now over those many Christmas with my dad during his years with dementia, I would advise anyone in the position that we were to make the most of those special times together. They do not last forever, and Christmas is overwhelmingly a time to embrace our families, particularly the most vulnerable amongst us. Sadly this year I will be putting my dad’s Christmas card on his grave, but memories of Christmases past (and particularly this one that I contributed to the Prime Minister’s Christmas dementia campaign ‘Xmas to Remember’) will warm my heart and hopefully ease the pain.

As this will be my last blog post of 2012, I will sign off by thanking you all for your support since I launched D4Dementia back in May. I am very proud of the way the blog has grown, the feedback from people of all backgrounds to say how much they have enjoyed reading it, and the recognition it received by being shortlisted for a Roses Media Award. My next blog post will be in January 2013, so until then keep warm, well and happy.

Merry Christmas, and may 2013 be the best year yet for improving the lives of people living with dementia and their families.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday, 12 December 2012

When illness strikes…

Dementia brings so many concerns for the wellbeing of those who are living with it, not least the risk posed by infections. Whenever my father was struck down by a bug, suddenly we would be plunged into a world of relentless uncertainty, desperately hoping that he would make it through his illness, always mindful of the possibility that he would not.  

One of the most striking things about dementia is the physical decline that it can bring. My father went from being a man with a very imposing physique to someone whose body shrunk to less than half its size. He went from walking constantly to being unable to move independently, from feeding himself to being entirely dependent on others for his food and drink intake. He lost the fullness in his face as a result of having no teeth, his limbs became bony, his skin very fragile and prone to bruising and tearing, and he was doubly incontinent for the last nine years of his life.

This physical decline leaves the person much more susceptible to infections that can be potentially life-threatening. Losing weight makes the body more vulnerable generally, and losing mobility makes pressure sores more likely and respiratory illnesses more difficult to shake off. Swallowing problems greatly increase the risk of pneumonia as a result of choking, or dehydration from not being able to intake enough fluids. Lack of fluids means an increased risk of urinary tract infections, and incontinence doesn't help with that either. Incontinence can also contribute to pressure sores if the skin is not kept clean and dry, and in a person with fragile skin all over their body, skin infections as a result of cuts or scratches are also possible.

In fact if you sit and think about just how many illnesses can be associated with the physical decline that dementia brings it is actually frightening. Over my father’s 19 years with dementia, and particularly during the last few years when he became very frail, we experienced all of the above problems. It comes as no surprise to me that so many people with dementia end up in hospital; my dad needed hospital treatment for both pneumonias and UTIs during the last 9 years of his life. This involved IV antibiotics and fluids, plus oxygen therapy, suction and chest physio for the pneumonias and catheters for the UTIs.

Thankfully, given the very mixed experiences people with dementia can have in hospital (as I wrote about here), my father was mostly treated in his care home with oral antibiotics. The routine prescription of antibiotics may be increasingly controversial now, but in my dad’s case they certainly gave us additional precious time with him.

Illnesses in people with dementia, apart from being very distressing to watch, often make dementia symptoms much worse. Infections contribute hugely to increased confusion and disorientation, affect communication, and can result in a loss of independence in areas of personal care, continence and eating and drink that is not always regained. Sadly, however, it is almost impossible to avoid a loved one becoming ill.

Care staff are frequently compelled to come into work when they are unwell, since they will either not be paid or their employers will be short-staffed if they stay at home. Visitors often come into care homes and hospitals harbouring illnesses, and requests to stay away if you are unwell go unheeded. I distinctly remember encountering disgruntled relatives outside a care home I arrived at one day, unhappy that they were unable to visit their loved one due to the home experiencing an outbreak of diarrhoea and vomiting.

I am not suggesting that care homes can become sealed germ free places, clearly that is impossible, but halting the spread of illnesses within health and social care settings, and the wider community, has to be the overriding aim. It should never be the case that people with dementia are considered a burden that can be reduced by allowing illnesses to proliferate, putting the most vulnerable at risk of serious complications and possibly early death.

We all suffer when we are unwell with an infection, but people with dementia often struggle far more because they cannot articulate how they feel, what help they need or the treatments that they would want. In those circumstances they need particularly specialised care delivered by knowledgeable and sympathetic professionals, whose priority is to give that person the most effective care possible so that they have the best chance of recovery.

Sadly some illnesses are too severe to recover from – the last pneumonia my father had was one too many for his frail body and led to a slow decline until he passed away a month later. We always knew the day would come when he could no longer fight, and given his physical frailties and propensity for chest infections, it was highly likely that pneumonia would end his life. Understandably, having worked this out many years before he passed away, every time he was ill that chilling realisation that this could be his last fight loomed large on the horizon.

Of course you never know when these illnesses will strike – my dad had severe infections in the summer as well as the winter - but I know that the majority of carers are fearful of winter ills the most. They often hit our elderly, vulnerable loved ones the hardest, and not just in care homes either – many people living in their own homes struggle to keep warm enough and become more susceptible to respiratory problems as a result. So whilst us younger people are all striving to keep ourselves well, spare a thought for all those carers with frail relatives for whom this is a particularly worrying time of year. If anything persuades you to be mindful of good hand hygiene and infection control, I hope that preserving the wellbeing of our most vulnerable people is it.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday, 5 December 2012

Catching some z’s

There are few things more closely associated with wellbeing than a good night’s sleep. It is something many of us take for granted until it is disturbed by the people or environment around us, or when those dreaded nights of insomnia strike and you lie in bed wishing more than anything that you were asleep.

Although some people can function well on very few hours of shut eye, most of us struggle through the day when we have not had the sleep we need. Sleep deprivation as a result of being a parent is well documented, and yet very little is said about the many carers who never get a good night’s sleep because they are looking after a loved one. For those who are caring for a relative with dementia, sleepless nights can become a feature of everyday life that lasts for many years, draining both the carer and the person with dementia physically and mentally.

From the night terrors, sweats and hallucinations that can often accompany the earlier stages of dementia, to the way in which the disease can eventually remove that vital understanding about daytime and night-time, dementia poses many challenges around sleeping for the person with it and those who are caring for them. As dementia progresses the person living with it may sleep more and more, and in the end-of-life stage constant sleeping is not unusual.

A classic sleeping pattern for people with dementia is napping in the daytime and then being wide awake in the evening. This was certainly true of my dad. Throughout much of his dementia his daily routine involved both a mid-morning nap (before lunchtime) and an extended afternoon nap between lunch and teatime. Come the evening, however, he was invariably wide awake and would remain so for many hours.

People with dementia will often nap for the same reasons that anyone else might, so it could be as a result of being very relaxed, becoming bored, or because the room they are in is very warm or sunny. It could be a side-effect of medication, or an indication that earlier activities have tired them out. Personally I always found it very calming to see my father having a peaceful forty winks. The only time I ever worried was when he developed a sudden pattern of excessive sleeping, which in his case was always a sign of an infection brewing.

Dad’s napping never really affected his ability to sleep at night, although over the years some of his GP’s still offered prescriptions for sleeping tablets like the pills were sweeties to be doled out to all residents. Dad had never been a person who went to bed particularly early (despite being a farmer who needed to be up at the crack of dawn) so we requested that the care home staff never put him to bed before 10pm. If he went to bed too early he would be very restless, moving himself around, making loud noises and appearing very distressed. He could easily sleep in his comfy chair earlier in the evening if he needed to, but mostly he would be bright eyed and listening to his music.

From a digestive point of view, it is also very important to monitor bedtimes in relation to eating times. Often as people get older their digestion slows down, and going to bed too early can cause indigestion, leading to pain and discomfort that the person with dementia may not be able to articulate. If that person also has a swallowing problem (dysphagia, which I wrote about here), it becomes even more important to be mindful of their bedtimes. With dysphagia it is vital that the person is kept upright whilst taking anything orally to prevent choking (in our experience a profiling bed was never as effective as a chair and cushions for support). In my dad’s case this advice also extended to a prolonged period after any food or drinks (usually at least 2 hours) to help prevent vomiting, and reduce the chances of aspirating any vomit (which could lead to pneumonia).

There is often a temptation in care homes to put people with dementia to bed early just because it may be more convenient for the running of the home. If a person has been used to going to bed early, or worked shifts, then of course their established sleeping pattern should be respected, but if someone has always gone to bed later, making them revert to early bedtimes, the like of which they may not have experienced since they were a child, is totally unacceptable unless the person themselves wants to change their routine.

The exception of course is when illness strikes, which will naturally change sleeping patterns immensely. During those times bed is often the best place to rest and recuperate, although in my father’s case he had to feel extremely poorly before he would sleep peacefully in his bed without becoming agitated. Sleeping upright in his chair is something that dad had done prior to his dementia when he was chesty, and he retained that ability to sleep restfully in his chair during the numerous chest infections that he had when he was living with dementia.

In dementia’s shifting landscape, sleeping patterns may well come in phases, and they often require huge patience in order to cope with them. Helping someone with dementia to sleep, particularly at night, is about understanding their preferred times and places to sleep, the things that help them get to sleep or the triggers that keep them awake. Do that, and when they are finally catching those z’s, my best advice would be to catch some yourself.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday, 28 November 2012

Going places

For most of us, travelling is part of our everyday routine. From going to work, looking after our families, shopping or enjoying activities, getting from A to B is just another challenge along the way. Travelling, whether it be close to home or far away, is also associated with pleasure - we do it to see something familiar and nostalgic, or experience the amazing for the first time. You may travel to enjoy a change in climate, experience a different pace of life, tackle an adventure or simply find rest and relaxation.

All of the above are perfectly valid reasons to move yourself from one location to another, and that does not change when someone has dementia. Interestingly my father was never a great traveller - indeed he never left the UK his whole life - and yet when he went into care as a result of his dementia, he became one of the home’s most extensive ‘travellers’, or as it was termed in those days, ‘a wanderer’.

He would walk endlessly along the corridors of his nursing home, and although it kept him fit it brought problems too. Dad was often reluctant to rest during mealtimes, and even when he was persuaded to sit to eat or drink, he would often nag me to ‘get on with it’, so restless was he to keep moving. As he became more unsteady on his feet (partly due to his dementia, but mostly because of the long-standing knee problem that he had), he became prone to falling, resulting in numerous trips to hospital for wounds to be stitched up.

Still he kept walking, undeterred, with an increasingly unbalanced motion until one day, without warning, his walking stopped and never resumed. Efforts were made to restore his mobility, but his knee could no longer support him, and due to his dementia he was unsuitable for knee replacement surgery. So my dad was no longer ‘a wanderer’. Except in my mind he never was.

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

When someone with dementia walks constantly, it may be as a result of seeking, finding, expecting or hoping to see a person, place or object, or to get away from something. It may also be that they feel too hot or too cold in their current environment, they may be looking for the toilet or to make a drink or a meal, they may be bored, wanting to escape from a particular smell or noise, confused about the time of day, feeling energetic or needing to try and walk off a pain or discomfort. You may never discover what their reason is, or the person with dementia may go into great detail about what they are doing. It may prove to be a phase, or a physical problem, like in my father’s case, may end it.

For my dad, much of his walking was harking back to his life as a farmer and a gardener. Walking the fields, rounding up the cattle, sowing crops, ploughing and harvesting. Another man in the care home had also been a farmer, and if anything he walked even more than my dad. A female resident had very different reasons. She had been an executive and travelled extensively abroad for both business and pleasure, with a particular love of dancing the night away on cruise ships. Another lady had been a busy wife and mother all of her life, and was used to being on her feet cleaning, tidying, cooking and running around after her children.

Sometimes it can be important to find ways to persuade someone who walks constantly to take a break. If they lose too much energy they can become prone to falls, and walking constantly at night when they would normally be sleeping can also be dangerous as tiredness develops. Eating and drinking whilst on the move is not advised, especially in people who need more time to chew and swallow their food to avoid choking. Constant walking can also bring those who are doing it into contact with others who may find their movement objectionable.

Building those break times into the walking routine means excluding a physical reason why the person with dementia is walking (ie: needing the toilet), and then finding an occupation for them that either ties in with their reason for walking (if you are able to discover what that is) or involves something that captivates their imagination, thus temporarily overriding their compulsion to walk. Never fall into the trap of viewing their walking as unnecessary though. Re-read the first paragraph of this blog post and for every reason you or I have to travel, remember that in the world of someone with dementia, they may have those exact same reasons too.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday, 21 November 2012

NCD (Otherwise known as dementia)

It was only ever going to be a matter of time before the increased profile of dementia brought about a renaming of it. Thanks to the American Psychiatric Association (Representing 36,000 physician leaders in mental health) their newest version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) will, from May 2013, term dementia as ‘major or minor neurocognitive disorder’.

Why? It is believed that the term dementia is stigmatising to people living with it and is not well accepted. The idea of the new terminology is to focus on the decline from a previous level of functioning as opposed to a deficit. It is also designed to better reflect the variations in the different dementias, rather than emphasising the need for memory impairment to be present for a diagnosis to be made (in some forms of dementia, memory problems are not the first symptom).

It is also worth pointing out that dementia has been successfully renamed in Japan (The old word for dementia ‘chihou’ meant stupid. The New word ‘ninchisho’ introduced in 2004 means cognitive impairment). So all well and good then. Or is it? If you are scratching your head in amazement, believe me you are not the only one. Science meets semantics meets political correctness meets, in my case, frustration. I do not believe that this is a helpful step forward. It is playing with words and creating unnecessary debate whilst the real issues, that are frankly much more difficult to tackle than name changes, compete for attention.

It is true that many people avoid seeking a diagnosis through fear and stigma, but changing a name will not remove that. The root of fearfulness comes from the concerns people have that there will be no support for them as they navigate their way through their journey with this disease, a journey that most never expected to make and are not prepared for. Supporting someone in their present situation, and helping them to plan for the future, is where every effort and resource should be directed if we are really serious about improving the lives of people with dementia.

There is an argument that the Latin origins of the word dementia are in themselves stigmatising. I suspect, however, that most people do not go home and look up dementia in the dictionary when they have a diagnosis of it. Certainly when my father was diagnosed we were united with him in not dwelling on the label attached to his symptoms. We were far more concerned about what the future would hold - how could we support him, where would we find support ourselves, and how would we adjust to the huge change in all our lives?

As for dad, he was only interested in walking, eating, talking, singing and getting on with things – we never sat and discussed the definition of dementia with him and he was totally unmoved by references to it. We had absolutely no problem in telling friends and family that he had dementia (by the time dad was diagnosed he did not have the ability to tell people himself). On breaking that news, my view was that if anyone had an issue with it that was their affair; I had no time or energy to waste on those with small-minded attitudes.

Dementia in itself may not be a perfect word for our present day understanding of this disease, but there comes a point when you have to accept that there may never be a perfect way to describe symptoms that most people will find distressing no matter what you call them. Major or minor neurocognitive disorder will no doubt also find objections. Adding ‘disorder’ to the proposed new name for dementia has its own negative connotations, the introduction of the words ‘major’ and ‘minor’ could confuse people about the severity of their neurocognitive disorder and long-term prognosis, whilst the sheer mouthful of the full name will bemuse many. At best this will lead to the abbreviation NCD, and in many cases, it will result in the explanation, “Otherwise known as dementia.”

If dementia could be associated with care, compassion, kindness, understanding, fairness and opportunity then I think the word would be seen in a similar light to the way in which cancer is now. So much good work is being done to raise the profile of dementia, and I am a firm believer that in all matters of awareness, care and training we should keep language simple (as I wrote about here). Working to explain what dementia means from a practical point of view, and how people can genuinely live well with it is actually far more relevant than the umbrella term for a group of symptoms.

Personally I have no vested interest in decisions over terminology. Whatever the disease we currently know as dementia is called in the future will not affect what I do – my interest is broadly in our older population, particularly people with dementia and their families, and how we can make their lives better. Having walked their path, I know what was important to me over the 19 years of my father’s dementia, and what his symptoms were called did not enter into that.

All of this makes me wonder who would be the winners from ‘re-branding’ dementia? Pharmaceutical companies? Advertising and marketing executives? Businesses that make and print promotional materials? People who are paid to sit in rooms and dream up new ideas? In fact pretty much everyone bar the people who really matter - people with dementia and their families. I suspect that they will just roll their eyes, bemoan the spending of precious budgets on calling dementia something else, and continue to struggle on in their daily lives. Sadly for many, struggle is the optimum word in that sentence, and alleviating that is where all our focus, energy and money should be directed.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday, 14 November 2012

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...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday, 7 November 2012

My dad

My dad
My dad
Welcome to my 40th post on D4Dementia. Back when I began this blog I had no idea it would become so successful, widely read and much loved, so I would like to thank each and every one of you for reading D4Dementia, spreading the word about it, sharing your stories with me and supporting my work so wholeheartedly, it is much appreciated.

My aim for D4Dementia is that it represents a place where those who have dementia or care for someone with it can find solidarity, support, help and advice, whilst also being a source of insight for professionals working in dementia care and policy makers tasked with improving the lives of everyone living with dementia. As I have said previously,  everything my dad went through is there to inform, educate and influence others – I believe he would have wanted to make a real and lasting difference, and I hope that will be his legacy.

Sadly the many people who have read about my dad’s dementia journey will never have the chance to meet him, so you will have to take it from me just what a down-to-earth, kind, loving, charismatic, funny and unassuming man he was. He worked hard but never played hard, he loved his family, animals, nature and the countryside, spent his spare time reading books, listening to music and singing songs (he had a beautifully rich, deep voice), enjoyed watching football, cricket and rugby, never travelled abroad, always loved his Sunday roast (especially when it was beef and Yorkshire puddings), believed in goodness, fairness and truth, and taught myself and my siblings so many values, most notably concerning dignity and respect, all underpinned by the simple idea that you treat others as you would wish to be treated yourself.

My happy childhood with my parents never extended into my teens and twenties – dementia crept into our world when I was about 12 years old, and over the following 19 years changed everything about my relationship with my father. Now I visit his grave when only a few months previously I visited his care home. Just over a year ago we had an amazingly happy family day out at a local woodland, a place I returned to this week. As I walked through the carpet of leaves, I reflected on that visit with dad and how the abundant happiness on that day is even more powerful now that it was then.

I think you only truly realise just how precious those times are when you know you can never have them again. It is so easy to see dementia as a reason to just ‘get through the day’ – do what you have to do for your loved one, deal with all those problems and issues that occur on a daily basis, and forget in the process to just live in the moment. Take in the good things (they are there, some days you just have to look harder for them), work through the difficulties (not allowing them to obscure everything else) and allow yourself to feel and express your emotions, never bottle them up.

Above all, when you care for a loved one with dementia, remember that they are still a part of you. Even now, with my dad passed away, so much of what made him my dad is in me – not least his love of writing. He dabbled in it for many years during my childhood and I think he would wholeheartedly approve of my career choice as a result. His qualities are something I try to bring to my work and my life, but even more than that, they represent the foundations of good dementia care.

My father was actually never a man who sought or enjoyed the limelight. He was self-deprecating, never wanted a big fuss on his birthday or at Christmas, would always try and stand at the back in a photograph, and was happiest watching and supporting those he loved. Yet interestingly, though his writing, he had a steely and sadly unsuccessful desire to tell his story – the story of his youth, of the landscapes and animals that shaped it, and the love he had for a life that was gone but never forgotten.

When dementia intervened in our lives it focused dad’s mind once more on those long lost days before it took him from us, leaving his more recent story to be told. So here’s to another 40 posts on D4Dementia, many more readers along the way, and most of all to my dad – an amazing man who taught me so much and I hope will teach others even more.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Thursday, 1 November 2012

Good to talk?

Having had 19 years of first-hand experience with dementia, I always find it very interesting listening to other people talking about it. By far the most powerful accounts are, for me, those that come from people who are living with dementia, those who are looking after them, and carers whose dementia journey with their loved one has come to an end.

Perhaps that is because of my background and close personal involvement in caring for my father, or maybe it is because there isn’t a theory, concept, project, service, product or sound bite that sums up dementia, explains it, makes it real and shows us a way forward like listening to people who actually know what living with dementia REALLY means. Tales of day-to-day struggles coupled with humour, honesty and warmth are, in my opinion, the greatest education tool for anyone working in dementia care who lacks their own personal family experience of this disease.

I will never look at dementia from a ‘professionals’ point of view. I am not medically qualified, I am not an academic, and incidentally I am not seeking to become either (probably a little too long in the tooth now anyway!). In that regard I suspect that I was in the minority at the 7th UK Dementia Congress, but then again I was also in the advantageous position of listening to people who are living with dementia talk and seeing so much of my dad in them from his earlier years with this disease.

Back then no one really spoke about dementia – now everyone is talking about it. The awareness is fantastic but I do not want dementia to just be another trendy bandwagon to jump on, or for real progress in care to be drowned in jargon, with business people trying to out-do each other for the latest, greatest idea. If there is one piece of advice I have for anyone in dementia care, it is that in my experiences with my father and many others the best aspects of good care are also the simplest.

That does not mean, however, that we cannot embrace new ideas. For me, two of the most enjoyable presentations I saw were from professionals who had come from overseas to explain how they are enhancing the lives of people with dementia. Randy Lee Griffin from the United States spoke about a program to bring the joy of birds, bird-watching and nature to people with dementia – a brilliant idea that reminded me of my father’s love of the great outdoors, how much he enjoyed watching and hearing birds whilst outside, the CD of birdsong that he had in his room, and a life-like soft toy cockerel that his hands spent many hours examining.

Yolanda Brand from South Africa detailed how her care home have enabled residents to keep in touch with their loved ones via social networking – a fantastic idea, not designed to in any way replace visiting or personal interaction, but to enhance communication when families are far away. To me it spoke volumes about the importance of families in dementia care, something that I feel needs to be emphasised far more than it is. It is vital to not only acknowledge and support those who are caring for a loved one with dementia and the many family members who are touched by this disease, but to tap into the unique knowledge base that they offer to professionals and policy makers (something that I wrote about in this post on good dementia policy).

For anyone reading this wondering if all the talking really changes anything, I would say that no matter how good talking is, action is what really matters. Many people are striving to do excellent work and my many colleagues within Dementia Challengers (#dementiachallengers) are testimony to that, but my thoughts during the Congress were predominantly focused on the people who were not there. Those whose dementia meant that they could not attend, those who were caring for someone with dementia whilst we were all talking and listening, those who were hearing a dementia diagnosis from their doctor, and those who were mourning the passing of a loved one as their dementia journey ended. They are and should always be the focus of everything anyone does in dementia care.

Should you need inspiration to keep that focus, I hope my last tale from the Congress will provide it. I was in the reception hall having just arrived when I met, via the person I had travelled with, one of the speakers that day. Introduced to me as Trevor, he greeted me warmly, shook my hand and kissed me on both cheeks. We exchanged a few words and then he left. When I met him I thought he was one of the many professional speakers at the event. I only discovered later, as he took to the main stage, that he was living with dementia.  A moment to reflect, perhaps, on who the real experts are.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Tuesday, 30 October 2012

Keeping it relevant

Having enjoyed our summer, or perhaps endured it as many UK readers may prefer to recall our latest disappointing attempt at warm, sunny weather, autumn is now well and truly upon us, and with it many sights and sensations that pose both opportunities but also problems for people with dementia.

Aside from the seasonal onslaught of coughs and colds, which any carer will know can not only create far more confusion in a person with dementia but can also be difficult to treat and may lead to secondary complications, the changes in the weather, the clocks going back in the UK (which means we now have lighter mornings but our evenings begin in late afternoon) and the arrival of some particularly noisy and colourful celebrations all create challenges in dementia care.

On the plus side, crisp mornings and carpets of leaves are wonderfully nostalgic for many of us, and for my father autumn always represented a magical season. The autumn of 2011 has particularly fond memories for us as a family – we had our last outing with dad before his health declined towards the latter part of 2011, and we were fortunate to have the most perfect weather for it. A cold, dry, sunny morning that saw us wrap up against the chill (dad looked a bit like the Michelin man with all his layers on) and venture out of his nursing home to the local woods.

There we pushed dad around in his wheelchair, admiring the trees, smelling the clean, fresh air and listening to the leaves crushing under the wheels and our feet, before sitting outside and having hot tea and treats from the café. It was a very special and happy day that gave us some lovely pictures to cherish and memories that will last forever - proof that autumn is a great time of year to get out and about with your loved ones and enjoy the simple pleasures that life has to offer.

October and November also bring with them Halloween and in the UK, Guy Fawkes night, an annual excuse to light bonfires and let off fireworks. Many care homes mark these events, but there are important issues to consider when bringing scary faces, ghosts and ghouls, explosions and flashing lights into the lives of people who may have a very limited understanding of what is going on around them.

Luckily my father always took everything in his stride, such was his nature, but there were some residents who were terrified by fireworks and would cry uncontrollably, whilst others found the flashing lights very disturbing. In a communal setting, balancing the desire to provide fun for some with the need not to distress or frighten others is difficult, but it is a vital part of respecting and understanding each individual. Halloween, for example, is a phenomena that many older people in the UK have little affection for or interest in, which often contrasts starkly with the experiences of the younger people looking after them who may have grown up trick-or-treating, making masks, costumes and having parties to mark 31 October.

During my time singing in care homes in 2011 (which you can read more about here), I was booked to do Halloween shows, Bonfire night celebrations and Remembrance Day events. Halloween involved a room full of residents most of whom had hats, masks or other costumes on, and all of whom completely lacked engagement with the staff who were dressed in full Halloween regalia – indeed even the Halloween inspired food did not interest the residents, with many of them struggling to understand what the buffet items actually were!

The bonfire gig had a better atmosphere, but some residents were upset by the fireworks whilst others were worried that the bonfire could engulf the building. By far the most successful events were those held to mark Remembrance Day. The residents loved being dressed up, enjoyed the decorations in the home, interacted very well with the staff (who were all in costumes), joined in the singing and flag waving and some even danced.

There is a legitimate argument that says you need to be careful with wartime reminiscence since it can bring back very painful memories of suffering and loss, but my experience was that it brought a very positive blitz-like spirit to the homes I visited, with everyone entertaining each other, smiling, laughing, reminiscing and for people with particularly advanced dementia, interacting in a way that they never normally did.

For me the lesson here is about keeping celebrations relevant. Not celebrating what we as people in our 20’s, 30’s, 40’s or 50’s may be interested in, but what people in their 60’s, 70’s, 80’s, 90’s and beyond remember and identify with in a positive way. Of course what for one person is a cause for celebration is, for another, something to dread (a bit like Christmas, which I will write about nearer the time). Equally there are also many cultural and religious reasons why people may not wish to celebrate certain festivals, but they may be unable to express that due to their dementia, or express it in a way that does not make the source of their discomfort clear.

However, it is often possible to think your way around these problems. For example, I recently read an interesting comment from an Activities Co-ordinator who said that instead of celebrating Halloween with her residents, she would be involving them in lots of harvest-related activities. Back when our parents and grandparents were young, harvest was a very important time in the calendar as they stored up the food that would see them through the winter (before the days of supermarkets!), so celebrating that is a great example of thinking about what older people with dementia would understand and feel motivated to engage with.

Sadly for those caring for people with dementia, this disease does not come with a rule book. One of the most important assets anyone caring for someone with dementia can have is common sense, which is often more likely to be found in the way we look after children or animals than it is when caring for people with dementia. So my advice when planning celebrations – be sensitive, be thoughtful, and most of all remember that people with dementia have very acute feelings and emotions. Our job is to enhance their quality of life, not diminish it.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday, 24 October 2012

The best of your ability

As regular readers of this blog will know, I am very candid about dementia and the experiences my dad had during his 19 years with this disease. It should come as no surprise then that this post is on one of the most sensitive subjects in dementia care, and one that has polarised opinions amongst many people that I know. Indeed the merits or otherwise of it divide clinicians, therapists and relatives alike – everyone searching for the ‘right’ answer.

As human beings most of us are conditioned from a very young age to answer questions 'as is' and as so many application forms tell us in our adult life, ‘To the best of your ability’. So when you are faced with a relative who has dementia and is asking you a particularly sensitive question, what do you do?

This conundrum is one that most people who have a loved one with dementia will face at some point. In that moment you have to decide whether you should answer as the current reality demands, even if you face bringing upset, disappointment, pain and anguish to someone you love very dearly, or whether you should in some way manoeuvre yourself around the subject by either avoiding an answer or answering in a way that does not involve direct facts - in other words, you validate the person's beliefs rather than enforcing their orientation into the current reality.

How you approach this situation depends on some key considerations. Firstly your knowledge of your loved one is vital – there is no greater moment for personalisation than this one. Secondly your understanding of their dementia – if you have been with the person throughout their journey with this disease you will have become accustomed to their reactions (even if sometimes this proves to be completely irrelevant when their dementia surprises you). Thirdly your views - instinct is very important, but it has to be measured against the situation you are in.

Many people wrongly approach this subject from a viewpoint established within their world - reality orientation - completely forgetting that the person with dementia is living their life is a world that is very different, and you should be aiming to support them there, not try to drag them into your reality. This approach is a vital part of reminiscence therapy, something that I wrote about here, and whilst pursuing memories of the past can occasionally lead into difficult enquiries, do not be put off from exploring the benefits reminiscence can have just because you want to avoid any possibility of having to negotiate awkward issues. In my experience those moments come around regardless of whether you are actively reminiscing or not, therefore it is far better to simply be prepared.

When it comes to answering sensitive questions, that timeless ‘To the best of your ability’ phrase says it all. You may have the ability to answer an enquiry on the whereabouts of a parent, partner or sibling who passed away many years ago, but for me the decision on whether you should do that rests on what is in the best interests of your loved one. Will answering this question in the current reality give the person peace and reassurance, or will they be asking the same question repeatedly, and in doing so and hearing the same news every time, just relive that grief-stricken moment over and over again.

Enquiries about deceased relatives may not be the only obstacle you have to overcome either. Equally awkward candid moments can come from questions such as, ‘Am I losing my mind?’ ‘Am I dying?’ ‘Why am I here?’ Answering yes to the first two could again create huge distress, and in answering the last one, telling your relative repeatedly that they have dementia when they may be from a generation that associates that word with very negative images of asylums and appalling treatment, is going to create fear in someone who may not have the ability to articulate that emotional response and feel inwardly wretched as a result.

Pure reality orientation can be a very brutal business, and in dementia care, where gauging the person’s understanding can be such a tricky task, it is a bit like roulette – you just never know how the information will be received, the implications of it, and whether you will be asked to supply it frequently thereafter. These dilemmas do not end with having to deal with difficult questions either. Making a judgement about passing on emotionally-charged information can be similarly challenging.

During my father’s dementia both of his sisters passed away. On each occasion we received the news, we had to make a decision about whether to tell dad. On both occasions we never told him. Whether that was the right decision or not we will never know, but I do know that it saved him unnecessary heartache. 

We had some old sepia photos of dad and his siblings when they were in their early 20’s, and those pictures always brought a positive reaction from dad. Realistically, he remembered his sisters as those vibrant young women with their lives ahead of them. He lived out memories of growing up with them, taking them to the theatre, and being their protective brother. News of their passing would have been, for him, about those young women dying, not the reality of elderly ladies passing away having had families, lived their lives and been happy. So we spoke of his sisters in the context of dad’s world, reminiscing about the things that they had done together, smiling and laughing as we recalled events.

Ultimately no one can tell you whether validation or reality orientation is the right choice for your loved one in any given situation. What I can tell you is that while some people view the validation approach as lying, I never once felt that in sidestepping my father’s questions or not imparting information that I was lying to him. Protecting someone you love from the harsh realities of your world so that they can remain as comfortable as possible in theirs is, in my opinion, never about lying.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday, 17 October 2012

Fear factor

Reading how frightened people feel about spending time with someone who has dementia, even when they are related to them, seems so incredibly sad to me. Perhaps it is because I can honestly never remember a time when I was fearful of seeing my dad, or because despite all the hours I have spent in the company of people with dementia I have never once felt threatened or out of my comfort zone. Then again, maybe you think that I have just been lucky.

It was certainly not the case that my dad had an easy ride with his dementia during the 19 years he lived with it, and as a result neither did we. For the majority of that time he was a strong, imposing man who could move independently, speak very loudly and be abrupt, rude or even offensive.  When he entered a more passive stage of being completely dependant on others and lost his conversational ability, we would spend many hours together that were characterised by me observing him and trying to work out what he was thinking, wanting or needing.

As a family we felt the sadness, anger, desperation and complete bewilderment that all relatives feel at having a loved one with dementia. However, what I never saw when I looked at my father was stigma; indeed I never even consciously thought about his dementia, dad was just dad. Very different to the man he had been prior to developing dementia of course, but still dad.

If you see stigma you feel fear, the two are intrinsically linked. Many public opinion surveys now tell us that dementia is the most feared disease in the world. Cancer and HIV were once where dementia is now, but with improved treatments for both people feel that there is hope, not just fear. Where dementia is concerned, they can only see fear:  the terror of developing it themselves and losing the life that they know, or the pain of seeing someone they love living with dementia.

Fear breeds fear – for so long people with dementia have been locked away, segregated from society, breeding fear of the disease though a lack of understanding or exposure to what dementia really is. Even though the disease is now coming out of the shadows, it is impossible to predict how long it will take for people with dementia to be accepted within society rather than ostracised and shunned as many still are.

When someone’s own relatives feel too fearful of their loved one’s dementia to spend time with them you know that stigma is alive and well and living in our communities. It is also the case that many people like their own ordered lives, and dementia is the ultimate in being disorderly. It is unpredictable, and relatives can wonder how to approach their loved one, talk to them or engage with them. My best advice to cope with this is also the simplest advice – see the person.

However changed someone appears to be, they are still the person you love underneath. You may need to be very imaginative to discover that, but I have never met anyone with dementia whose true self cannot be reached with thoughtful, loving perseverance from a dedicated family. As a relative you may endure a lot of heartache to find that peace, but giving up could ultimately leave you living the rest of your life with regret.

Having lost my dad to dementia, I can honestly say that I am so very, very grateful for the time we had together. Yes it was time clouded by the disease – it robbed him of so much – but dementia never got in the way of us spending time together. I could have let it of course, there are often times when it is easier to walk away than take a path that you know will hurt you, but it is important to see beyond your immediate feelings and emotions.

Dementia only gives you so long with your relative before time is up. Allowing your fear of the disease to keep you from making the most of that time is something that one day you will not be able to remedy, whereas fear can always be conquered. Being self-conscious about how you should act around someone with dementia, or fearful of what they might say or do is so very unimportant when you sit and think about the bigger picture of life and all that it brings.

If I ever had a fear with regard to my dad, it was a fear for the day when he would no longer be there. It was never a fear of him not recognising me, not answering me, not responding to me hugging him or bringing him his favourite food, it was a fear that one day I would no longer be able to just sit and have a cup of tea with him. Believe me, when that day comes, you wish more than anything to go back to any amount of ‘awkwardness’ just to live in the moment, breathe the same air and know that you love that person so much you would do anything for them. My dad has passed away, but for everyone who still has their loved one with them, take in those moments, pour as much life into them as you possibly can and never let fear win.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday, 10 October 2012

Remember, remember

The ‘good old days’ are often lovingly joked about as people get older. Wartime stories, tales of food shortages, working conditions, ‘make do and mend’, homes without technology and roads free of congestion can all seem very old-fashioned to my generation and those who are younger. If history is not something that captures your imagination, you may view talking about it with boredom, possibly even contempt, but remembering where we come from becomes increasingly important as we get older, and if someone develops dementia it takes on a vitally therapeutic role.

A commonly recognised characteristic in dementia is an inability to remember current or recent events, whilst having an often perfect recollection of the past. Indeed it can be when a loved one consistently exhibits this behaviour that their family become concerned about the possibility that they are developing dementia. Often the further back in time someone with dementia goes, the stronger their memories become, until they seem to be exclusively living in a time that those around them can struggle to appreciate.

In a society that craves immediacy and recognition, people with dementia are often considered to have ‘lost’ everything by being unable to live in the same moments that we do, but in many respects I view the way someone with dementia lives in the past as a safety mechanism that the disease places around the person. After all, for most people their youth and childhood is a magical time of carefree adventure, excitement, happiness and discovery. Retreating back to the years when you felt cocooned, loved and nurtured is something most of us would like to do when we hit low points in our adult lives, and whether you have dementia or not, or will go on to develop it at some point in your life, the memories of your youth will remain with you forever – in that respect, as in many others, people with dementia are not so very different from those without it.

A common mistake many people make when caring for someone with dementia is trying to persistently drag them into an understanding of the present, rather than learning to embrace the past. Questioning someone with dementia about their day or seeking opinions on current events is often very bewildering for them and frustrating for you. What you should ask yourself is why are you asking them to join your world when it is far easier for you to participate in theirs?

Unless you grew up with the person who has dementia you will never really know the true picture of the world they are living in, but that does not mean you cannot embrace it wholeheartedly. Reminiscence has a major role to play in dementia care in all areas, whether someone is living in their own home, in a care home, in hospital or involved in community based activities. It can stimulate interaction, provide support for someone with dementia through being non-challenging to them, promote comfort by nurturing happy memories, bring families together in a shared activity of talking about the past, help professionals gain a valuable insight into the person that they are caring for, and may even result in someone with dementia surprising those around them with stories that can be insightful, inspiring and very moving.

As a key part of personalisation, reminiscence can take on many forms. For some people it may be about favourite music, films, poetry, novels or art, whilst for others it could be best approached by reliving key sporting moments, fashions, architecture, signage, engineering or customs. Pictures, both personal and public, that evoke memories and illustrate what someone with dementia is thinking about often play a vital role in reminiscence therapy; everything from old seaside photos to domestic scenes can stimulate conversation (see the cards made by 'Many Happy Returns'), alongside newspaper headlines of major events, old magazine covers or photographs of famous faces.

It is generally far easier to promote reminiscence when someone is in their own home, surrounded by many of the things that can help to support their memories. Once that person moves into a care home or is taken into hospital this often changes, leaving them very disorientated, disengaged, and alienated by their surroundings. It does not have to be like that, however. Memories can be supported in EVERY environment, bringing huge benefits to the person with dementia, their families and the professionals caring for them. 

Reminiscence therapy is not an expensive option for health and social care providers; it simply requires an adjustment in thinking that is about supporting people with dementia in their world, rather than expecting them to adapt to ours. Reminiscence should not just be confined to specific ‘activity’ sessions either. It should be everywhere in every moment, and become a partnership between professionals and relatives, especially as family knowledge can often make reminiscence particularly meaningful.

Dementia may rob a person of their present day, but while the past remains alive you have a window into your loved one’s world that can only bring you closer to them. Remember together, explore together and work with what dementia has given, rather than what it has taken away.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday, 3 October 2012

Time well spent

Me and my dad
Me and my dad
Discussing my dad’s journey with dementia often brings a fascinating insight into people’s perceptions of the life I had during my father’s nine years in care homes. One reoccurring theme is the assumption that being part of dad’s life during those years was unbearably hard, and that visiting him must have been something I found extremely difficult.

In fact the truth is somewhat different. Aside from the last few months, when we had what became insurmountable problems at the home (as I detailed here) that totally changed the atmosphere and experience, the time we spent with dad was extensive, precious and, now that he has passed away, represents cherished memories that we will hold forever.

I always found comfort, rather than distress, in visiting dad, and actually struggled the most when we were apart and I did not know what was happening with him. Then I would wonder if he needed anything, was feeling lonely, poorly, happy or sad, and whether the care he was receiving was of the standard we expected. When he could still hold a conversation we could always chat on the phone if I could not visit, but when I wanted to be updated on how he was I relied on the staff to answer my questions. Having family members visit at different times helped to communicate news on dad, but I always missed him and looked forward to seeing him, regardless of how difficult a visit could be.

When someone with dementia is exhibiting challenging behaviour, being aggressive physically or verbally, or in the case of the total opposite of that, being unresponsive and not even looking at you, talking to you, or you feel they are looking straight through you, it can be demoralising to continually put yourself through that experience and you can be left wondering how to cope.

For some people visiting is a choice, for others it is a necessity, and it is not for anyone to judge a person on how they respond to the situation that they find themselves in. Some relatives cannot handle seeing a loved one deteriorate, whilst others question the ‘point’ of visiting someone if they do not know who you are, are asking the same questions repeatedly, and forget that you have been there with them the moment you have left. I always looked at it in a different way however:  if for just one minute of my visit I made a difference then I brought something to my dad’s life that he would not have had without me there. Often you may feel you never had that minute, but it is about whether your loved one has.

For me, visiting a friend or family member with dementia is what you make it. If you go expecting them to react to you in order to spark the visit, you will make that visit harder for you both. If you employ a policy of interaction, rather than just reaction, you have a greater chance of feeling you have done something worthwhile. I always liked to be very hands-on, feeding or shaving dad, doing his hair and nails, singing with him or reading books, checking his clothes, mending them and sewing in name tapes, or taking him outside to the garden. Having that level of involvement in dad’s care, keeping busy and chatting whilst I did things, kept most visits light and cheerful and created a happy atmosphere.

It is very common to feel that you are visiting a person that you do not know anymore. Accepting the changes and remaining as positive as possible, at least in front of your loved one, is a tough but necessary art to learn. There is a saying that ‘Strangers are only friends who haven’t met yet’. Visiting someone you have known and loved for years, possibly all of your life, and being treated as a stranger can drive the most devoted relative away, but your role is to make friends with them over and over again.

Against a backdrop of feeling like you are grieving for your loved one, you may be more inclined to cry than be friendly and happy. Many tears were shed over the years by quietly retreating to my dad’s en-suite bathroom for a moment of reflection, but I always firmly believed that I did not want to upset him by allowing him to see me distressed and wondering why I was crying.

Occasionally that resolve did slip, even the best coping strategies fail occasionally, but on the whole going to see my dad was about visiting him, we were not visiting his dementia. We ate together, had copious cups of tea, listened to music, watched sport or went out and about – all the things we did as a family during my childhood. Back then it was unthinkable that he would end up living in a communal establishment, but when that became a reality our involvement was what stopped it being an institutionalised environment and made it his home. The result? Visiting was easier and crucially, dad was happier; a classic example of time well spent.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886