A moving experience

Moving into a new home is always stressful. I spent most of 2014 trying to move house, and I can testify to why it is generally considered to be one of the most stressful life events, alongside bereavement, divorce, major illness and losing your job.

Fortunately, at the end of our very protracted move was a lovely new home, and even unpacking became strangely exciting – the thrill of finding new places to keep treasured possessions. Some items had to be given to charity shops, but the vast majority of the things that we have accumulated over the years came with us. From the day we moved in we were able to close our front door to peace and quiet, our own space, our own choices of food and entertainment and a life of domesticity that is exactly how we want it to be.

There is a another kind of moving house, though, that is altogether different. A move that is more traumatic than most and yet remains shrouded in stigma: moving into a care home.

It’s the kind of move that is often not of the person’s choosing (although sometimes it is), where your personal ‘front door’ is just your bedroom door, where peace and quiet and sometimes even privacy are at a premium, where you live in extremely close proximity to numerous other people, and where complete personal choice around food, entertainment and daily life isn’t the norm for everyone. Perhaps even more significantly though, it is a move that doesn’t involve packing up every item you have accumulated over the years, but instead forces you to choose a select group of possessions – only as much as will fit into your bedroom.

As if the stress of the move itself isn’t enough, a move into a care home often also brings with it elements of those other most stressful life events for either the person or their immediate family.

·       Bereavement:  As I wrote about in my blog post ‘Decisions, decisions’, care homes are perceived by some people as being ‘God’s Waiting Room’. I vividly remember in one of my dad’s care homes, a new resident arriving on the morning when a much loved resident had just passed away after a short illness. Although the new resident’s arrival had been planned for some time and their room was in a different part of the home, there was something very thought-provoking for that family: they were settling their loved one in as the undertakers were arriving to collect the deceased. If nothing else, it reminds you of the fragility of life. 

·       Divorce: For some couples who have been together for most of their lives, the day one of them needs to move into a care home and the other remains in the family home is one of unspeakable heartbreak. In some ways it could be considered even more upsetting than divorce because it is almost always a decision forced upon the couple, where neither wants it to happen and in any other circumstances neither would ever instigate it. No matter how many hours you go on to spend in that care home with your partner, you no longer live together:  your bed at night and your table for breakfast in the morning are now just for one.

·       Major illness: This is one of the main reasons a loved one moves into a care home, and it is often the fact that that illness has progressed that makes the move necessary, certainly in the case of a person who is living with dementia. For many families this can also go back to the point about bereavement, with many relatives feeling a huge sense of loss.

·       Losing your job: If you’ve been caring for a loved one who now needs specialist residential care, or indeed you can no longer cope as a carer, your loved one’s move into a care home - however much it may be needed - will permanently alter your way of life. You effectively lose your job as their primary carer overnight. For some people that may be a huge relief, but for many others it can leave them with feelings of hopelessness, lack of purpose and huge anxiety about how their loved one is being cared for in the care home.

Taking all of that into account, it puts the stress of the average house move - however stressful you think it is - into context. Moving into a care home isn’t just about changing your physical environment and leaving behind many of the items you have been surrounded with over the years; it also changes relationships and has an emotional element to it that you only really appreciate once you find yourself in that situation.

 

In many ways, I had that emotional toll softened by the fact that for the 3 moves my dad had into 3 different care homes over a 9 year period, each one meant a release from hospital, which was an infinitely more impersonal, regimented and clinical environment than any of those 3 care homes were. Had moving into a care home meant dad walking out of the family home, getting into a car and us driving him to a care home, it would have been far more emotionally difficult.

 

In my dad’s case the first move into a residential care home was possibly the most upsetting for him and for us – it came following a decision by dad’s care team that he couldn’t return home from hospital as he was considered at that time to be a danger to himself and others. The upset, however, was largely because of a fear of the unknown. We certainly weren’t sorry he was leaving hospital, and neither was dad.

 

The second move came after another spell in hospital, only this time dad had been there 3 months and lost half of his body weight. We just desperately wanted him to be in a more homely environment and be properly fed – it may sound a very basic aspiration but believe me, we were truly at our wits end with hospital care. The third move came at a time when dad was near the end of his life, and this time our desperation was for him not to die in hospital but instead to be somewhere as close to a home from home as possible.

 

And that’s the point, care homes really can be a lovely home from home if you are fortunate to find a good care home; a place where your loved one is happy and where together you make new friends that help you celebrate the happy times and comfort you in the sad ones. There are lots of negative stereotypes about what motivates families whose loved ones move into care homes, but being part of a care home community truly can be an enriching experience and, even if you are only an occasional visitor, it can be ‘Time well spent’.

 

For anyone feeling anxious about the impending move of a loved one into a care home, or indeed is feeling the emotional fallout (particularly guilt) after such a move, this Facebook status update from a lovely lady whose mum has just moved into a care home will hopefully make you smile as much as it made me smile when I read it:

 

“Just love the fact that I turn up to take mum out today and she tells me she can't because her friends will miss her, and then tells me to go home because she's busy”

 

Until next time...

You can follow me on Twitter: @bethyb1886

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Hydrated and happy

Dehydration is one of the biggest challenges facing anyone caring for someone who is older or living with dementia. Many older people are known to be chronically short of fluid in their bodies, leading to urinary tract infections and many other illnesses which can result in life-threatening situations that require urgent hospital treatment and intravenous fluids.

Good levels of hydration are vital to remain healthy and alert. Without them we can get confused and unresponsive, two symptoms of dementia, and also two reasons why it may be assumed that someone has dementia even when all they need is to increase their fluid intake. Understandably, in someone who is already known to have dementia, dehydration can make their dementia much worse. So how can you ensure that the person you are caring for remains hydrated and happy?

First of all consider the sort of drinks being offered. Have you tasted them personally? Are they pleasant? It may seem obvious, but it’s easy to ignore the fact that if what we are offering someone doesn’t taste nice it is unlikely to be welcomed. When a person has dementia they may not be able to articulate their dislike for something, so they will just leave it or spit it out, causing immense frustration for them and their carer(s).

Many care providers are hooked on giving their residents squash – water flavoured with concentrated and often additive-packed so-called ‘fruit’. This is about as far from real fruit juice as you can get – it is synthetic, can be metallic tasting and is full of preservatives that should be avoided. I certainly wouldn’t want to drink it and we banned squash from being given to my dad (as I wrote about here), favouring real fruit smoothies that were a perfect consistency and a delicious taste.

It is also important to consider how someone has always liked their drinks served. Are their long-standing personal preferences for milk, sugar or other additions being met in their hot drinks? Are they the right strength, and if they have always liked a particular brand, is that what you are making for them? Are their cold drinks the right flavour and style of drink?

Also think about the temperature of every beverage you serve and be mindful of seasonal preferences – not everyone wants a hot drink on a warm summer’s day.  If the person is able to drink independently, make sure the cup, mug or glass is something that they can pick up easily – assess the weight, style of handle and possibility of spillage. Finally, is the receptacle reflective of their personal choice? I once knew a lady who had spent the previous 70+ years of her life drinking her tea only from a cup and saucer. When carers started giving her drinks in beakers or mugs she simply refused to pick them up.

If you’ve covered all of these permutations and drinks are still not being welcomed, it is worth considering if someone’s preferences have changed. If they are unable to articulate how they feel, you may never know if they are looking for something different. Try alternative tastes and styles of drinks, including things that they may never have had before or that feature stronger flavours (taste buds can begin to fail as we get older).

Also think about how food can contribute to hydration. For example fruit and vegetables often have a high water content, while items like dry potato, al dente pasta or rice could sap fluid levels. Compensate for this by creating sauced based meals and ensuring that what you are serving is sufficiently moist (ie creamy mash rather than dry, lumpy mash and pasta that is served with a moist sauce).

Try things like ice creams and yogurt (being mindful of the phlegm-producing effect of dairy products that I wrote about here), sorbets, jelly or ice lollies. All of these have a high fluid element and can be the sort of ‘treats’ that might tempt someone when a drink in a glass or mug won’t. Cold products can also have a numbing effect on the mouth and throat, which helps some people who are scared of the feeling of food or drinks in their mouth.

Other contributing factors to dehydration can be the development or progression of a swallowing problem (that I wrote about here), dental problems, and symptoms of advanced dementia like being unable to recognise the link between the drink in front of you and the need to pick it up and swallow the contents. There may be muscle weakness, pain in joints or even bruising that could make it uncomfortable for someone to pick up a drink, particularly a heavy one. There may also be fear attached to drinking – for example being worried something may be too hot or cold, or that it could be spilt. Drinks may also need thickening if someone has a swallowing problem, but this can have mixed success depending on the beverage and can (despite what manufacturers say) change the taste of the drink.

When someone has advanced dementia, and especially if they develop a swallowing problem, the only solution to keeping them hydrated could be spooning or syringing drinks. In my father’s case, spooning was very successful. Thickened drinks, slowly spooned, allowing him time to swallow between each spoonful worked very well for a long period. Some people prefer syringing, but this must be done slowly since a sudden injection of fluid into the mouth can be startling, unpleasant and potentially lead to aspiration.

Ultimately, the key to keeping someone hydrated can often be trial and error, creativity and perseverance. Your role in helping them to prevent dehydration is one of the most valuable and rewarding things you can do, and most importantly of all it is lifesaving.

Until next time...

You can follow me on Twitter: @bethyb1886

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A pill for everything?

Modern medicine is a wonderful thing. It has given us cures to illnesses and diseases that previously killed people in their prime. We have surgical procedures and treatments that can alleviate suffering and give humans of all ages a new lease of life, and there have been many medical and scientific pioneers whose work deserves only the highest praise.

Sadly, with these medical advancements has come a desire for pharmaceutical companies to provide a pill for everything. We want to pop something in our mouth, swallow it and for all our problems, pains, issues and illnesses to magically disappear. We now have pills for weight loss. What about a pill to replace exercise? Many drugs that are prescribed are little more than placebos, yet as a society we still demand more.

We can’t understand that antibiotics are utterly useless at making your average sore throat, cough or cold for an otherwise fit and healthy person any better (and could even make them worse). We just want to take something, anything, so that ‘normal’ life can be resumed as soon as possible, but what happens when their isn’t a suitable pill, it doesn’t work or doesn’t even exist?

Drugs for dementia is a thorny issue. First of all, drugs have not been developed for all forms of dementia. Those that have (licenced for use in early-stage Alzheimer’s) are far from universally effective, and it can be impossible to predict who they will work for. Even in the people they do work for they only alleviate symptoms. No pills currently exist to cure any form of dementia.

Despite this, the UK Secretary of State for Health, Jeremy Hunt, seems to believe that early diagnosis of dementia (that I wrote about here) is vital to provide people with the chance of a prescription for one of these dementia drugs since they can, “Help stave off the condition for several years.” The evidence for this, however, is far from conclusive, with some doctors admitting that while they, “Improve cognitive function a bit,” the consensus seems to be that they may only, “Turn the clock back by about six months.”

I have heard and read stories of people who, having been prescribed Donepezil (Aricept), rivastigmine (Exelon), galantamine (Reminyl) or Memantine (Ebixa), have seen huge improvements in their symptoms, which is great for them and their families. Amongst people who I know personally, however, those who have had these drugs have seen little or no improvement, in some cases decline has continued, and having eventually come off the drugs decline has advanced at an alarming rate and resulted in them dying long before they were expected to.

Dementia drugs really aren’t for everyone. Doctors should not be under pressure to prescribe regardless of looking at a person’s individual history, present symptoms and future wishes. I am actually very thankful that my father wasn’t given dementia drugs. It was bad enough that we had battles over the use of antipsychotics (as I wrote about here), and other drugs like statins that I gather he was only put on because, “Every one of his age should be on them,” and antidepressants, “Because everyone with dementia is depressed.” Wherever these gross and inaccurate generalisations come from they have no place in a healthcare system that should be embracing personalisation.

There is precious little patient care involved if a doctor has lost the ability, or autonomy, to prescribe based on what he or she genuinely believes the individual patient actually needs.  Is pressure from pharmaceutical companies causing this approach to our healthcare? Or is it pressure from the government? It is almost certainly about making someone somewhere very rich at the expense of the person who is given these drugs, often at a time of significant vulnerability in their life and by a doctor who they most likely have complete trust in.

To put the effect of common drug treatments into perspective, I currently know of someone in their 50’s, on a cocktail of prescription drugs including antidepressants and sleeping tablets, who myself and others have noticed struggling with significant memory and behavioural problems. Prior to knowing the side-effects of the medication that this person was taking, I seriously wondered if they had the beginnings of early-onset dementia. Long-term, the implications on their brain health from these drugs could mean that sadly I may not always be wrong about that.

For me, the burning question in modern healthcare is what has happened to personal responsibility? Of looking at ourselves, our lifestyles and the choices that we make and changing those rather than expecting a pill to do it all for us. Quick fixes and easy options might be more tempting in the here and now, but what about the future? When all the pills we take stop working, or the side-effects cause long-term damage that more pills can’t fix, what then?

In the case of people with dementia, drug treatments really aren’t the only option. Indeed for many people they aren’t an option at all. There are no quick fixes. In fact ultimately there isn’t a ‘fix’ at all, but what will work for everyone is care that looks at each person as a whole and finds the elements that will help them to live well with dementia. The most effective treatment lies within us, unlocked by those with skill, dedication and compassion, qualities you will never find in a bottle.

Until next time...

You can follow me on Twitter: @bethyb1886

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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...

You can follow me on Twitter: @bethyb1886

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