Thursday 28 June 2012

Little touches that make a BIG difference

One of the features of living with dementia is the constant battle over what the mind can help the body to do. As the disease progresses ability to do simple personal tasks, or even awareness that they need doing, can gradually decline, making assistance with things that were previously taken for granted much more important.

We all like to look and feel our best, and that certainly doesn’t alter when someone has dementia, even if they cannot articulate it. Their tolerance of having assistance may fluctuate however, as witnessed on the many occasions I battled to file my dad’s nails whilst he valiantly tried to prevent the emery board from doing its work.

Throughout every stage of my father’s dementia we strived to keep him looking smart and feeling as comfortable as possible. He was always a proud man, long before dementia ever came into his life, and it is almost as if his pride was transferred to us when he could no longer maintain the standards he had set himself.

Whilst it may sound quite simple, paying attention to the little touches that make life more pleasant is surprisingly time consuming. Apart from the shopping for clothes and bed-linen (dad had his own pure cotton sheets, since all three of his care homes used the cheapest, nastiest poly-cotton bed-linen that resulted in him sweating at night), I became an expert in keeping him clean shaven (if the carers had not had time), maintaining short nails (essential to limit his scratching) and regularly set up in the hairdressing room to perform my duties as a barber.

When someone is living with dementia, their perceptions of their appearance can alter quite dramatically. Mirrors are renowned to cause problems, usually because what the person is seeing does not reflect what they are thinking or expecting, and in my dad’s case when he caught his reflection in a bathroom mirror shortly after I had cut his hair one day, he exclaimed that he was, in fact, now bald! (He wasn’t).

Outside specialists came in to all three of dad’s care homes to offer chiropody and eye tests, but when dad developed severe problems with his teeth (long-standing issues existed anyway, but with his dementia keeping them clean was a massive problem), we had to run the gauntlet of dental services. Suffice to say that if doctors do not receive adequate training in dementia, many dentists receive even less, and the few that we saw clearly struggled to cope with a patient who could not understand instructions. However, numerous appointments later and dad’s rotting teeth had all been removed, which may sound very drastic, but poor dental health is known to cause problems throughout the body and is a massive infection risk.

Introducing a full set of dentures to someone without the ability to comprehend what on earth is being put into their mouth, and therefore being completely unable to co-operate with this alien invasion, proved very unsuccessful. Spending many years without a tooth in his head did not bother dad one bit though. His gums toughened up, his oral health was greatly improved, and his appetite remained one of the best, if not THE best, in the whole of the nursing home.

For dad, another major problem was his skin. Keeping him cool, particularly when he had no ability whatsoever to move himself, was a constant round of opening and closing windows, using fans, adding and removing layers of clothing, and hoping that the care home could finally get their antiquated heating system to offer gentle, constant warmth rather than blasts of hot and cold. Sweating meant itching, and with no ability to tell us when he felt warm or cold, everyone needed to be very mindful of his body temperature.

Bloodied scratches became a regular feature on dad’s skin, despite those short nails and us trying glove treatment, and indeed at one point a GP even declared that dad had scabies (he didn’t, but the hassle this diagnosis caused not just to the home but to us as his family in our homes – which effectively had to be pulled apart and everything washed – is the stuff of legend). Initially we trusted in the products prescribed by doctors to treat dad’s skin, but when it got worse, it was plainly obvious that all the chemicals and synthetic ingredients were making his skin, and his mood as a result, ten-times worse.

Investment in natural skincare products made a huge difference to dad’s life, and when the carers had the time to shower him regularly and apply body creams and lotions, his skin was calm and moisturised and his agitation disappeared immediately. To anyone else watching his distress, you would have been tempted just to pop a pill into him to calm him down, but a little thinking around the problem and a perfectly logical solution was found.

Our experience was always that such small, yet common sense steps had an amazing effect on dad’s quality of life. He was always the smartest resident in the home, but more than that, his personal care also brought him calmness and comfort that he could not possibly ask for but that he really needed. The things that many of us do regularly for ourselves can easily slip when someone has dementia, but just like the ladies in the home having their nails done or make-up applied, a little bit of pampering can become a fantastic therapy, as well as giving people with dementia dignity and pleasure, and there can be nothing more worthwhile than that.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Tuesday 26 June 2012

Five-a-day to keep dementia away?

Fish pie - Brain food?
Fish pie - Brain food?
One of the things I am most frequently asked is how do you prevent getting dementia? People who have seen how this disease eventually ravages a person would do anything to avoid getting it, and those who have no first-hand experience, but then hear about my father’s physical and mental decline, are generally keen to avoid developing dementia.

Sadly there is no magic solution to prevent getting this disease. The healthiest and most physically and mentally active can still develop some form of dementia during their lives. My father is a prime example of this: he was a very active, hard-working man with a healthy outdoor lifestyle, who very rarely smoked his pipe and only occasionally enjoyed alcohol. Prior to developing dementia he was not over-weight, and had a healthy diet with lots of fruit and vegetables.

The tipping point, in my father’s case, was retirement. His previously busy life as a farmer suddenly stopped; the adjustment coincided with him losing interest in some of his hobbies and his life became more sedentary. The huge mental upheaval of no longer being a working man took its toll, and where his life had previously been about the dawn-till-dusk responsibilities and expectations of tending his animals, he was suddenly as free as a bird. Sadly, however, he never found his wings within this new existence.

Very gradually the type of vascular dementia known as multi-infarct dementia (which is caused by a series of small strokes), set in. These strokes were so tiny that for a long time dad never reported any change in how he felt, even though the strokes had begun to wreak havoc in his brain, and by the time symptoms of what we now know was dad’s dementia were very obvious, damage had occurred, and would continue to for many years before he finally had a diagnosis.

Other relatives in dad’s care home also reported that their loved ones had led healthy and active lives prior to developing dementia, so is there any answer to the question of how to avoid the big D?

Given my interest and research into this subject over many years, and the expert advice, studies and tips I see on a daily basis as part of my job, I would love to report that there is a fail-safe way to avoid developing dementia. To date this has not been found though, and however well people can live with this disease, and I truly believe they can with personalised, therapeutic care in community settings that value, support and embrace them as a person, there will obviously never be a substitute for prevention.

I am not medically trained, but I absorb all the information available and one of the most powerful messages is the one reminding us that what is good for the heart is also good for the brain. I am a great believer in fresh, wholesome food, rich in fruit and vegetables, low in dairy and with meat and fish in moderation. In short, the key to our food and drink intake seems to be about maintaining a good 20% acid/80% alkaline balance.

I avoid processed, ready prepared, or take away meals, always cook from raw ingredients (including staple items like bread), and never touch anything with additives in it. I would rather have a teaspoon of raw cane sugar than anything with so much as a particle of artificial sweetener in it. In fact, in all three of my father’s care homes, where they offered residents squash (laden with artificial sweeteners) throughout the day, we banned them from feeding this to my father and brought him in pure fruit smoothies instead. We firmly believe that the nutrition within those drinks (especially considering that he could eat very few fruits raw due to his swallowing problems), helped his body to recover from the dozens of chest and bladder infections that he endured during the last few years of his life, proving what I wrote about here, that good nutrition is vital to not only preventing dementia but helping those already living with it to have a better quality of life.

I exercise as much as I can (I could always do better), am a big believer in natural (non-chemical) skincare, get as much rest and relaxation as my schedule will allow, and try to keep a healthy work/life balance. If giving the brain a good workout is as beneficial as we are lead to believe, then mine certainly gets a daily dose of that due to my job, and I have no desire to retire, which in the case of my generation is probably just as well! I have never smoked, rarely drink, never touch Coca Cola or the like, and confess to being addicted to water. Wherever possible I also source alternatives to pharmaceutical preparations, something I think most pharmaceutical companies would prefer isn’t encouraged. The only thing I do struggle to influence is the pollution in the atmosphere, which I would be the first to admit is very bad for you.

When my father was initially diagnosed with dementia, we sought the advice of one of the leading old-age psychiatrists treating him to find out her view on what could be done to prevent dementia. She recommended a ginkgo biloba supplement, while other advice I have read more recently suggests supplementing with B vitamins can help to keep the brain healthy. There are literally hundreds of studies out there suggesting positive associations between good brain health and different supplements or foods. What to believe is always the main problem, but my feeling on all things is generally that moderation is the key.

Granted we all have our own choices to make, our own lives to lead and face the consequences of our actions as a result. Whether mine or my family’s choices will make it any less likely that we will develop dementia only time will tell, but I firmly believe that anything that keeps you healthier generally is at least a step in the right direction.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Thursday 21 June 2012

Be inspired, be very inspired

There is something that touches your soul when you hear the individual stories of how people care for those they love the most. Families often make such huge sacrifices in these circumstances, completely altering the plans and lives they once had to accommodate the needs of someone so dear to them, that they would literally put their life on hold indefinitely, just to give their loved one the best quality of life possible.

Husbands and wives devoted to their other half, truly embracing the very heart of the vow in sickness and in health, children and grand-children giving their mum or dad or grandparent the love and support that they once received from them, siblings caring for a brother or sister, or more extended family members, friends and even neighbours helping to look after someone vulnerable and in need.

Every caring role, no matter what the age or health problems of the person needing care, demands such special skills and devotion, but in dementia particularly, I think the challenge of meeting someone’s needs is even greater. The mere fact that as dementia progresses the person living with it becomes less and less able to contribute to decisions about their care, in itself poses huge difficulties.

Add into that equation unpredictable or distressing behaviour of which there are numerous examples, the fact that your average home can hold previously unrecognised dangers that can put you or the person you are caring for at risk, and that at any given time you could be required to cook, clean, provide personal care, stimulation and activity, protect your loved one’s health and safety and monitor their whereabouts, pretty much simultaneously, and it is no wonder that so many carers struggle.

Meanwhile, as you are doing this, you are also trying to make the most of every moment with your loved one, who is gradually changing from the person you knew. You need time to adjust to this new reality and enjoy the simple pleasures that can still exist, and yet the relentlessness of your role can make that impossible.

All the time the carer and their loved on are on this treadmill there are only two certainties: 1) that dementia is a progressive disease and 2) that it is terminal. However, there are no time frames for each stage of the disease, no map of this journey since everyone is affected differently, and no telling how you will cope, both with your caring and your own personal feelings, further down the line as things inevitably progress.

People are not robots. Carers may often feel that they have turned into some sort of machine, but emotions bubble under the surface. Anger, resentment, guilt, sadness or the sheer claustrophobia that you can feel as a carer can all become overwhelming.  Yet people do not give up. Roles may change, as I discussed here, particularly as dementia progresses and the needs of the person living with it become ever more complex, but the love and devotion never end, even when the person you have cared for over many years passes away. I still struggle now with the adjustment of having my life to lead and it not including caring for my dad.

No one inspires me more than people who embrace a caring role, most notably those who do it unpaid and for family members, but also those who devote their working lives to caring for others. I’ve met many wonderful carers from all walks of life, both paid and unpaid, and one thing that has always struck me is how very inspirational they are. If everyone had the same love, commitment and selflessness within them then the world truly would be a better place.

If you are caring for someone right now, don’t ever underestimate the amazing contribution you make to society. Anyone who does not recognise that has never walked in your shoes, but may well do so one day and will then see just what this unique role entails. If I could make what you do any easier I gladly would, and through keeping you at the heart of campaigning for awareness, education and change, I hope that in time I will.

Since I began D4Dementia I have met in person, and through social media, many wonderful carers, and been privileged to share in their stories. Your comments are always very welcome, and I am here to answer any questions that you may have, or just provide a sounding board whether your day is a good one or a bad one.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Tuesday 19 June 2012

The carer’s job description

If you had to be isolated, unsupported and fight the system, would you apply to be an unpaid carer? This is not a position that fills you with hope for the future, gives you room for personal development, or brings the benefits of structured team work. Yet thousands of people fulfil this truly unique role; not because it was their dream job and certainly not because of the bonuses and benefits.

Caring for a loved one is a relentless, 24/7 commitment. Unless you have been in the position of having a vulnerable person depending on you for everything, is it difficult to imagine the life-changing role of becoming a carer to someone who, quite often, used to look after you. Yet this is a role that is unpaid, offers very few if any periods of respite or holiday, and makes no provision for sick leave, despite the fact that carers often neglect their own well-being because of their commitment to their loved one, making them much more likely to suffer health problems themselves as a result.

Unpaid caring is the ultimate example of selfless giving, and yet these people are taken for granted, their contribution often goes unrecognised, and many feel abandoned by the health and social care systems at the very time when they need the support of professionals the most.

Our experiences of caring for my father fall into the two most common ways in which family members support an older relative with a long-term condition. For 10 years my father’s dementia went undiagnosed, he lived at home and month by month increasingly struggled to complete simple everyday tasks. As his dementia progressed, he needed his family more and more, and we supported him as much as we could. We tried to get him the help he so desperately needed, generally failing on all counts due to the lack of understanding of dementia, until the ‘crisis point’ that I talk about here. Once that moment had passed, dad’s needs were far too complex for him to have any other option but to go into a care home.

I think many people make the assumption that if your loved one is in a home, you do not actually do any ‘caring’ any more, it is just ‘visiting’. I can assure anyone labouring under this misapprehension that if you are as hands on as we were in the last nine years of dad’s life, it is a full-time job. Granted the caring role alters, but the fundamental facets of it remain, plus you add many more to do with the politics of privately run care homes.

When your loved one is in a care home I think many people believe that all those battles for help and services, that you had when your loved one was living in their own home, magically disappear. Not so. You still have to fight for everything your relative needs, plus constantly helping and advising the care home staff, and monitoring your relative’s health and wellbeing very closely.

The unpredictability of the situation and the frequent need for out-of-hours services does not change either. I remember so vividly those unexpected middle of the night trips to A and E because dad was gravely ill; I would be tired as a rat, sick to my stomach with fear and dreading what may follow. Furthermore, because hospitals are not places where people with dementia generally thrive, you then spend every waking hour with your loved one so that you can feed them, assist with their personal care, educate the staff about them, and make sure they receive treatment that is appropriate to them.

Caring is a role that truly never ends. At every step of the way, from the early years of dad’s struggles at home, through his diagnosis of dementia and the years in care homes, to the very end, I can honestly say that caring for my dad was the one thing in my life that I never escaped from. In the meantime, I found that friends drifted away, relationships failed, my career was kicked into the long grass, and my peer group generally did not understand the devotion I felt and the duty I had.

One recurring theme I have always found talking to family carers is that however much you do, you always feel you could do more. Your maximum effort can still leave you feeling like a failure, and nothing you ever do can change the most fundamental thing that you wish you could alter, namely to take away the dementia, or whatever illness or disease they are battling, and have your loved one back again, as they were.

Given that no civilised society can exist without unpaid, family carers, it is remarkable that our supposedly very modern country undervalues this vital contribution made by the most dedicated and loving citizens that it has. The job description should read that you will be supported, helped and advised 24/7 to assist with providing the outstanding care that only those who truly care can provide. Love can do so much, but it cannot conquer all when it is exhausted, frightened, overwhelmed and alone.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Thursday 14 June 2012

How do you make good dementia policy?

Dad and I, 15 October 2011, a very happy day
Dad and I, 15 October 2011, a very happy day
Having spent 19-years graduating in dementia, I can honestly say that I think I know dementia pretty well. Its highs and lows, the surprises and quirks, the sadness and pain, and the endless battles you fight for the care your loved one needs and deserves whilst endeavouring to keep yourself from falling apart! You know how you would like the support systems to work, you know what you’d change if you could, and you would go above and beyond to make the lives of everyone going through that same journey as you a little bit more bearable.

The fact that I can say that there are highs at all may leave some people rather baffled, but dementia isn’t a black hole of nothing. We focus so much time on what is lost when someone develops dementia, but there are occasionally unexpected moments of tenderness and happiness too.

Take for example my dad; he was generally never a man to show huge emotion or emotional engagement. He was a loving and caring father, but not someone who showed their feelings very much.  Yet one afternoon, as I sat with dad in his care home in a state of fairly obvious upset over a boyfriend (not for the first time where this particular boyfriend was concerned I might add!), dad’s kindly smile and request to know what was wrong was so very touching, and so very un-dad like. Equally his, “Thank you for everything,” said so clearly and with tears in his eyes as I kissed him goodbye one Christmas Day, totally crumbled my steely resolve to have a good, British, stiff upper lip. Put both these moments in the context of dad’s very limited communication skills, and you see why their impact was so keenly felt and so totally unforgettable.

Yet speak to most members of the public who have no experience of dementia and they will probably paint a picture of huge negativity, if indeed they have much concept of dementia at all. They may also have very little appreciation of how dementia impacts upon the life of both the person living with it and their nearest and dearest. Yet I would venture to suggest that most people have huge capacity for learning more about dementia, showing kindness and compassion to people living with it, supporting improvements in services and attitudes and, hopefully, have a demonstrable desire to avoid developing dementia so that we may have some hope of reversing the very alarming predictions for future cases.

So how do we change perceptions, educate, and encourage everyone to bring positivity to the lives of people living with dementia? My view is that you need those with direct past and present knowledge and experience of dementia to be at the forefront of policy making, privately and publically.

Without that personal touch, the policy you end up with may be scientifically perfect, clinically expert, and from the point of view of politicians, business leaders and the health and social care sectors achieving a level of awareness that reflects their own expectations, but it lacks human emotion, and without true appeal to the hearts and minds of society as a whole, it will only ever achieve limited success.

If you want to know about frontline warfare, you ask a soldier. If you want to know about famine in Africa, you go to Africa and ask the people who are starving. If you want to know about dementia, ask the people living with it and carers past and present who have dedicated their lives to understanding dementia. We are the people who are more than just the eyes and ears; we are the lifeblood of the campaign to raise awareness, challenge dementia, and make every community the best place it can be for someone throughout their journey with dementia.

The greatest educators are people who have learnt from their own experiences, and in the case of carers past and present, from experiences that they never anticipated or welcomed but that they embraced wholeheartedly. Policy makers are missing a fundamental chance to build on the current profile of dementia if they do not welcome, engage, and put at the forefront of policy and campaigning all the people who have truly graduated in dementia. We are the UK’s greatest asset as we give dementia the greatest challenge it has ever faced.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Tuesday 12 June 2012

End-of-life care: A very personal story

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

We spend so much time endeavouring to preserve life and bring quality to every moment of it, and rightly so, but given that dementia is progressive and eventually terminal, equal focus is needed on ensuring that when the end of someone’s life is drawing near, they are treated with the utmost care, compassion, love, respect and dignity, and crucially that the experience is completely personal to them.

I had never seen someone die before, and I had no real concept of how those last few days of my father’s life would unfold bar, of course, the inevitable conclusion. So many years had been spent anticipating and fearing that time, but never really thinking about how we would approach it.

When it was clear that dad’s struggles were beginning to engulf him, what we knew instantly is that we did not want his life to end in hospital. Not because the staff didn’t provide good care, they did, but with the huge pressures on a busy, acute medical ward, it was clear that dad would not have the personalised care, or the privacy, that we wanted for him.

Finding a care home prepared to meet his needs was a huge blessing, and we set about moving all of his belongings into an airy room, overlooking a garden where squirrels and cats had daily games in front of the big window. Dad would spend those last two weeks of his life in bed, unable to do anything for himself, to speak or, in the last five days, to eat or drink. What he had, however, was a lovely view, walls covered in his pictures, a bookcase full of his favourite books, his most cherished music playing continuously, a light aroma of lavender in the air and his family with him, talking to him, reading to him, and even producing an occasional ripple of laughter as my siblings and I gently teased each other in a way familiar to dad from our childhood. It was an emotionally charged time, but also in many ways a celebration of everything dad meant to us.

In those two weeks dedicated staff kept dad clean and comfortable, his pressure sores heeled with expert nursing, extra staff were drafted in to give him an hour and a half of pampering in the bath, his birthday was celebrated, and he was never left wet, dirty, scratching or in any way distressed. The compassionate staff would come and talk to dad kindly, stroke his head and hold his hands. They were also a tower of strength for us in every moment of those long days.

Caring for dad was a partnership between us and the carers, and in those last five days we kept dad’s mouth clean and moist, his skin moisturised and his room became a haven of calm tranquillity, love and reassurance. We did not want to lose him, but it was his time and he needed to know that he was loved, cherished and respected, that his work was done, his peace had come and that we would, somehow, cope without him, something that will always be easier said than done.

During that time, even though we all knew that the end was in sight, dad was as valued by everyone in that care home as much as he would have been if they’d had all the time in the world left with him. Nothing was too much trouble for the carers; dad was prioritised, never ignored, and his privacy and dignity were preserved at all times.

Our sadness at losing dad was immense, it still is, but in those hours after his passing the nurses and carers were equally affected too, and as the undertakers took dad’s body to the chapel of rest, the staff cried with us. Whatever training manuals say about not getting emotionally involved, I can honestly say that it is the emotional involvement that brings out the greatest compassion, and I am so very proud that the people caring for dad felt so much for him that they were able to do their jobs in the way that they did, and as a result felt his passing so keenly. It is a true mark of compassionate care, and a fine example that many other people in the care industry could learn from.

When someone has battled dementia for so long, the end of their life may be considered a blessing by many. The end of their pain and suffering is certainly something that the person may long for, but for their loved ones and carers, making those last few days and hours the best they can be is as important as all the care you give in the years before.  Personalisation throughout the whole of someone’s journey with dementia is vital, and however difficult it may become, at the end of that journey the frail person in that bed is still a real person, not a disease. There is no greater responsibility for those loving and caring for someone with dementia than to see that person through to the end of their journey knowing that they had a good life, and an equally good death.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Thursday 7 June 2012

Loving our elders and betters

In the UK we are wonderfully good at valuing children and animals. Yes, there are isolated cases of cruelty and abandonment, but the vast majority show huge compassion towards the young, putting children at the centre of so much in society, and lavish copious amounts of love and dedication towards the animals we invite into our homes and share our lives with.

Which makes it all the more baffling that so many do not extend those same feelings of caring and nurturing towards our older people. It has been said that when an older person dies it is as if a library has burnt down. Yet that library, that unique contribution that the older generation can make to our society, isn’t valued, tapped into or appreciated anywhere near enough while they are alive.

When the library becomes more muddled, the books are put back into places they weren’t previously, or aren’t put back at all, and the knowledge can no longer get out in the way that it used to, the perception is often that the person is worth even less. They are easy to ignore or if we do recognise them they are often treated inappropriately. We do not support their independence enough, we do not encourage them to lead full, active and meaningful lives for as long as possible, we do not consider their feelings enough, we do not do enough to preserve their dignity or show them respect, and ultimately they are considered by many to be just one great big burden that is not wanted.

In our vacuous society that values appearance over pretty much every other quality, children are far prettier than older people; consequently society loves their youthful enthusiasm and naivety. Children can ask the same question ten times and adults accept their inquisitive nature, while older people with their endless stories (often repeated) are an endurance, and their more considered, slower movements remind their younger counterparts of the inevitable passage of time and the conclusion of life.

We do value some older people however. The Queen, for example, is clearly held in very high regard: no one thinks her contribution is any less valid now that she is 86. At the Jubilee Concert it could be argued that the older performers were given more prominence than many of the younger ones, and arguably their contribution had more gravitas, quality and popularity.

My appreciation for my ‘elders and betters’ as my dad would have put it, is partly from my upbringing, partly from my love of learning about days gone by, and partly from having had the most inspiring experiences in my life with people who were around a long time before I was, most notably my dad, even during his dementia. When his library was slowly shutting down, it was the discovery of the odd rare edition tome of knowledge amongst the jumble that made every previously unfathomable plot worthwhile.

Judging a person by their age, in a way that you wouldn’t because of their skin colour or sexuality, means you miss the fundamental joy of life. Those that were here before us had experiences we will never have, learnt things we really need to learn, and made their mark in the world that nothing can erase, including dementia. Their life’s work makes our world what it is, and our cognitive ability can more than make up for any deficiencies they may be experiencing if we treat every day like a walk in their shoes.

No one wants to feel unloved and no longer needed. No one need ever feel like that in a compassionate society that values all of its citizens. Our affection and care for our ‘elders and betters’, those with terminal illnesses, those who need our help and support, kindness and understanding is what puts the Great into Great Britain. Establish that attitude at the centre of dementia friendly communities and we will be getting somewhere.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Tuesday 5 June 2012

Decisions, decisions

Moving a loved one into a care home is one of the most difficult, emotional and life-changing things you will ever do. It is even more challenging when the person you are moving into a care home has dementia, and if the advancement of that is what is forcing the move to happen, your loved one will probably be unable to make their own decisions about their care, leaving it to their family to make some very tough choices.

Over the course of my father’s dementia we had to find a new home for him on three separate occasions; initially a residential home with an EMI (Elderly Mentally Infirm) unit, then an EMI nursing home, and finally a home that could meet his end-of-life care needs.

Dad was never able to play any part in these searches, and I remember vividly commencing that first round of visiting homes with huge trepidation. You are conscious of finding somewhere that your loved one will like, and where the care, atmosphere, staffing, facilities, services, opportunities and location match your expectations.

Many people look for somewhere that they can visit easily, but the overwhelming consideration has to be quality of care. Looking back on that first foray into choosing a home, we knew so very little about what exactly we were really looking for, but we settled on a home that, based on dad’s assessment, should have been able to meet his needs.

Just a few short months later, however, and the home said that they could not manage dad’s increasingly challenging behaviour, so it was back to hospital for dad, and for us, back to finding him a home, only this time we had to look at nursing homes.

Cue visits to three homes, one of which we could not wait to get out of (the smell, the couldn’t-care-less attitude of the staff and the whole atmosphere just screamed GET OUT!), and another that, whilst undoubtedly very smart, had ‘Visiting Times’ and ‘Toileting Times’ and clearly wanted to be as inflexible as possible. Moving dad there would have felt like putting him in a prison. So we settled on home number three, not because it was aesthetically beautiful (it wasn’t) or because the rooms were spacious (they weren’t), but because we were so impressed by the staff we met on that visit, and we continued to be impressed by them until the day they sadly left for pastures new.

Ideally that would have remained dad’s home for the rest of his life, it certainly should have done, but after four changes of profit-making ownership and numerous managers, the last instalment proved too horrific for dad to remain there, and so we were back on the care home hunt again. This time, with dad’s specific end-of-life care needs, we had a home we liked turn him down purely because his face didn’t fit. With dad now taking up an acute hospital bed and his birthday fast approaching, I pestered the powers that be until we were offered the chance to look around another home. Run by a not-for-profit organisation, it was a revelation in care homes, and proved to be a wonderful place for dad’s last days.

So, what have we learnt from this experience? If you are looking for a home for the first time you may well feel like a cat caught in headlights. It is pretty overwhelming and the pressure to make the right decision is huge. No home will ever be perfect, but it should always be the best it can be, and give you the reassurance that your loved one will receive the highest quality care, where all their needs are met with dignity and respect, and where you are actively involved in planning every aspect of their care.

Be choosy, ask as many questions as you need to, if possible see at least three homes before you decide, research and see if anyone you know has experience of the home(s), if you get the chance ask other visitors about the home, even residents if they can answer you, revisit at another time, even visit unannounced, trust your gut instinct and analyse staff carefully; if they haven’t got time for you or indeed the residents they are meant to be caring for during your visit, chances are they won’t have time for your relative either. I would also add that you can check the CQC report for every care home online.

Inevitably finding a care home for a loved one can be a very sad process, associated with a lot of negativity. I think much of the stigma around care homes is because they are seen to be places where people die. Indeed, one relative we knew from dad’s first nursing home even called it ‘God’s Waiting Room’. It is true that many people pass away in a care home, including my father, but they can be places of positivity and happiness in life as well.

Over the years we spent many happy hours having meals with dad, listening to music, sitting in the garden and drinking copious cups of tea, proving that the right care home for your loved one can also be a home from home for you too.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886