Wednesday 24 April 2013

Talking the talk

Through my work I often encounter people who say that they cannot talk to someone who has dementia. They are scared to talk to them (as I wrote about here), don’t know what to say, are unsure of how they will respond, or simply can’t see the point. Many times I’ve heard, “Well it’s not like they are going to remember what you say is it?”

I would argue, however, that these attitudes reflect far more negatively on the people expressing them, than they do on the communication skills of the person with dementia who they are seeking to avoid a conversation with. It is a very sad indictment on our own abilities if we cannot find the time, make the effort, and actually learn how to have a meaningful conversation with a person who has dementia.

It doesn’t need to be a full-on debate, a few words can provide immense insight, but how, you might ask, are you going to do that when someone’s dementia is advanced to a point where they are constantly repeating themselves, speak words that you cannot understand or make noises that don’t even represent words? In the last few years of my dad’s life, his noises became more and more dominant in his communication armoury until they were the only sound that he would make, unless of course we put a song on that he loved, then whole words that were perfectly timed with the music would flow from his lips.

So much about communication with someone who has dementia, especially in the more advanced stages, is about the approach that you take. You can assess a situation and decide that you can’t work it out so you won’t bother. Or you can adapt (try singing your conversation rather than speaking it), learn to listen carefully, and choose topics that might spark your loved one’s interest or engage in activities with them that could naturally promote conversation. Often once a song had reminded dad of his vocabulary, the noises he previously communicated with would be temporally shelved in favour of clearly articulated words that, due to their rarity, brought such joy and happiness to everyone around dad, and seemingly to him too.

Those moments were the bright spots in what were often long days of effectively a monologue from us, but it wasn’t always like that. Earlier in dad’s dementia he went through a stage of constant repetition, and I have met many other people with dementia who similarly feel the need to say the same things over and over. Thinking about this logically, it’s not entirely unexpected. If someone cannot remember what they have just said but still have the thought in their head, they are likely to repeat it. Equally, if they feel that they are not being listened to or acknowledged, they may seek to constantly reaffirm what they want you to hear. It can also be a symptom of boredom, a lack of engagement in their surroundings, or a need to break out from their environment to experience new sensations.

Frustrating though constant repetition might be, the worst thing you can do is try to fight against it. Getting angry, being dismissive or rude won’t help anyone, and it’s unlikely to stop the repetition that you are finding so irritating. Learning to go along with it, rather than seeking to correct it, will be a lot less stressful in the long run, and will also avoid that terrible guilt every carer has felt when their exasperation has led them to say something that they never meant, but that may potentially have hurt the person that they love and care for.

Dealing with misunderstanding, as a result of muddled words or words that you cannot fathom, can be equally challenging and lead to very similar emotional fallout. For a long time my dad kept saying something that sounded remarkably like ‘Obama’. Bizarrely he was doing this long before Barack Obama became US president, leading me to wonder if dad actually had a sixth sense about the result of the 2008 American election!

I never did work out what he was trying to tell us, and sometimes guessing can lead you down a path that is even more baffling than when you originally heard your loved one say the word(s) that you cannot understand. I eventually came to the conclusion that dementia can produce a language all of its own, related perhaps to the world that the person with dementia is living in, or possibly entirely unconnected – like an involuntary reaction that has no foundation or meaning and cannot be controlled.

So how do you cope with all the vagaries that come from communicating with someone who is in the more advanced stages of their dementia? My advice would be to apply the 3 golden rules:

1) Don’t ask questions

2) Don’t contradict the person

3) Learn to love their repetition

Of course like all rules you will break them, we did on countless occasions, but never intentionally – it isn’t only people with dementia who can have an involuntary reaction to a situation. We tried to make up for our shortcomings by allowing time, showing patience, keeping our expectations in check and our minds open to what we were hearing, remembering that if something left us bemused, frustrated or hurt, that what the mouth may say wasn’t necessarily a reflection of how the heart was feeling.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 17 April 2013

"He used to look so handsome"

My dad
My dad
Never has the idea that a picture can tell a thousand stories been more true than when it comes to caring for our older people, particularly those with severe physical or mental health problems.

I have written previously about my dad’s memory box, all the photos contained therein and the many other boxes that were posted around dad’s care home, each one divulging so much about the person whose photos and memorabilia appeared within that small wooden cabinet. They all showed a life lived with love and laughter, achievements, fashions and ultimately the passage of time.

When you are creating something like that you tend to look for images that convey as much about a person as possible. I found the same was true when I was looking for photos to go onto the order of service for dad’s funeral. In the end I picked a photo of dad looking incredibly smart, slim, vibrant and happy on his wedding day to my mother for the front, while for the back, some fun promotional pictures dad had done as a very young man in his early 20’s when he was trying to get work on the stage (yes, he wasn’t your average farmer but a very multitalented man).

In preparation for the wake afterwards I compiled a photo album of images of dad. For the people who came to the funeral, some of whom had never seen dad during his dementia, the early photos in that album showed the man that they remembered. For the carers who came to pay their respects to someone that they had nursed through those last few years, their reaction to the same photos was identical to when they saw dad’s memory box for the first time - “Wow, is that really him? He used to look so handsome.”

Well yes, there is no denying he did. Whilst age was relatively kind to dad in as much as it let him keep a great head of hair and beautifully soft skin, dementia and the illnesses that came along with it meant that he lost a lot of weight and muscle tone, he didn’t have the cognitive ability to learn to wear dentures so eventually ended up with a sunken mouth where his teeth had been, and he came to rely on others to meet all of his personal care needs to keep him looking smart and well groomed.

My dad
My dad
Older people aren’t viewed as beautiful in the way that younger people are. To many of their youthful counterparts they are seen as a reminder that no matter how much we try and turn back the hands of time, ageing is an uncomfortable fact of life. Many people don’t even see the person behind the wrinkles, dentures (or lack of them), their grey, white or thinning hair, shrunken lips and creased ear lobes – they just see their own mortality.

As people age, we often use their appearance to make judgements about them, their abilities or choices. Those judgements then influence how we treat them, which can lead to negative interactions. If we wanted to we could choose to ignore the wrinkles and the grey hair, and see the sparkle in their eyes or their cheeky smile, and if those qualities aren’t immediately apparent we could interact with them in a way that sees those joyful characteristics appear.

Everything that made someone handsome or attractive in their teens or 20’s doesn’t suddenly vanish after a certain age – it matures, but it is still there.  I would argue that if the youth of today feel that our older people are a distasteful reminder of the effects of ageing, fast forward 50 or 60 years and imagine bodies with faded tattoos, piercings and botched cosmetic surgery. Things that young people consider make them more attractive now may provide a very different story in later life, and I suspect they will then be crying out to be seen as the person that they are, rather than the appearance that they exude.

It’s true to say that older people bruise more easily, their skin is more fragile, but I think the bruises we never see but the ones that hurt even more are the feelings of being cast out, ignored, marginalised, isolated and deemed to be stupid, inept, incapable or a waste of time – often purely as a result of judgements made by others just from looking at them. These are the effects of ageing that you never see, but for those experiencing them, they cut deeper than anything their reflection could throw at them.

Imagine a world where we never make judgements about people based on their appearance. My sister already lives in that world. She has been blind since she was six, and because of that she has never judged anyone on how they look. So if someone’s appearance is likely to ever prejudice how you approach them or interact with them, try closing your eyes. By doing that you might just listen harder, learn more and judge less.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 10 April 2013

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...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 3 April 2013

Reflections on a life lived and a man loved

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

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

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

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

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

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

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

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

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

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

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

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886