Monday 17 February 2014

The corners of your mind

I’m a bit of a fan of all things vintage, as you might have gathered given my love of our older generations. Music is no exception to this rule, hence the title of this blog post coming from a much loved song, ‘The way we were’.
I’ve always felt that the lyrics to this song are a rather poignant reminder of how life changes through the years. It also has important meanings in relation to our memories, the invisible library that lives within our brain and chronicles our lives. Should dementia ever set in, that library becomes muddled, and eventually toms of knowledge are like books that have been borrowed from the library and never returned. The person with dementia then becomes a bit like a frantic librarian, trying desperately to remember where they have stored the particular segment of knowledge that is required.
I wrote in 'Loving our elders and betters' about how, when an older person dies, "It is as if a library has burnt down." Many people would argue that dementia is like a slow burn, very gradually turning memories to cinders, often initially with little physical evidence of the ‘fire’ taking place. Given the choice I think some people facing such a future would rather experience a giant inferno that engulfs their lives with such rapidity that they have no idea that it has even happened, but dementia is rarely like that.
It teases the mind, allowing us to retain selected memories, often those going back many years, but not always the most useful ones. Those crucial practical memories of how to undertake and successfully complete tasks may go very early, as can memories of what we did or said a minute, hour, day or week ago. The precious memories of key life events, and key individuals in our lives, may also end up being filed under absent.
Being deprived of that last set of memories is particularly painful because they characterise our lives and us as individuals. They act as a safety blanket, giving us a place to meander into during those quiet moments of reflection, or provide thoughts of positivity and strength when we are feeling vulnerable or worried. We want to be able to remember people, places and things that are important to us, knowledge we have studied hard to acquire or experiences we want to be able to pass on, but dementia has other ideas.
Memory problems are something we generally – and wrongly - associate with ageing, as I wrote about here. Moreover, I think that throughout our lives many of us are guilty of taking our own memory for granted, and in our interactions with others we readily expect their mind to perform with seamless speed and accuracy. We don’t have time or patience for a hunt around someone else's personal library – we want our information instantly, and not being able to deliver that often leads to the belief that someone is unintelligent, useless, worthless or stupid.
However dementia, and the way in which it can affect our memories, can hit anyone and not just in old age. Having a previously brilliant brain is no guarantee that you won’t get dementia. I’ve met leading doctors, academics and businessmen who are living with dementia – all had hugely admired brains that have now been ravaged. My dad, whilst never a man of high academic standing, had a truly impressive mind – his knowledge of the countryside, farming and animals was second to none. His wisdom was a gift that as a child I never really appreciated. Now it’s gone, I miss it more than words can say.
The corners of our minds harbour things that we may think we will never need, but each memory has its place and importance and being without any of them will adversely affect our lives at some point. We talk a lot about memory ‘loss’ in dementia like it is something that can be found again. Sadly even for people who achieve respite or improvement from their symptoms through therapeutic interventions, they are still living with a terminal disease that is characterised by eventual decline.
What I admire most, however, is the way in which many people with dementia try to guard against this, always working to prevent dementia steeling more books from their memory library. I think as outsiders looking in, we often don’t realise just how hard people with dementia try in order to maintain normality and keep all of those important memories alive. For many, notebooks and post-it notes become their allies – the feeling being that what cannot be remembered must be written down.
Increasingly I think technology (smartphones, tablets and other handheld devices) will have a role to play, particularly for people who are diagnosed with younger onset dementia and are already used to leading very technological lives. However, I think nothing will ever really beat our loved ones for helping to keep memories alive and effectively providing a 'Back Up Brain'* for us all, regardless of whether we develop dementia or not.
Dementia has the power to literally re-write and remove our memories, twisting, confusing and manipulating those precious nuggets of understanding and experience that we build up over our lives. As the song tells us, "Memories may be beautiful and yet, what’s too painful to remember, we simply choose to forget." Having that choice is a wonderful thing that we should never take for granted. 

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886
*Back Up Brain – BUB –  is a phrase borrowed from my inspirational friend Kate Swaffer, an Australian lady living with young-onset dementia for whom her husband is her primary BUB. I would recommend checking out Kate’s blog

Monday 3 February 2014

Being a pain detective

One of the questions I’m asked a lot in relation to dementia care is around how we find out if someone is in pain. In advanced dementia, when potentially a person cannot articulate clearly if they are in pain, and if they are, where that pain is located, it can be really difficult for those caring for them to ensure that they have the care they need.

We experienced examples of this with my dad. When he was first diagnosed with vascular dementia he was still walking and talking and generally getting into various scrapes. He had a few trips to A&E to be patched up when he fell, including one occasion when he split a blood vessel in his head and had to have emergency staples to close the wound (and when I say emergency I mean that there was no time for local anaesthetic – dad didn’t even flinch).

He was becoming increasing unsteady on his feet and aside from the effect dementia was having on his body, we also knew that there was an unrelated physical cause: Dad’s knee was gradually wearing away - he had been due a knee replacement operation for many years. Eventually he became unable to articulate when his knee was particularly painful or ask for pain relief, and with the risk posed by general anaesthetic he wasn’t suitable for the replacement operation.

It became a ‘guessing game’ to work out when he needed pain relief. On the one hand the nurses looking after him felt he was more likely to need it when he was walking (which he frequently did and couldn’t be dissuaded from), but we also knew that for many years previously dad had often complained about his knee more when he did nothing and it began to ‘seize up’ – hence often being restless in bed.

My dad was never one to make a fuss or take medication unless absolutely necessary (indigestion remedies and throat pastels aside!) and that didn’t change when he was living with dementia. He would dismiss any suggestion that he was struggling with his knee or that walking had become painful, then one day he just stopped walking – we put it down to the knee finally giving up and potentially his brain also giving up on trying to walk.

Of course pain relief problems don’t just exist in relation to joints. Dad would develop bladder infections: Anyone who’s had a UTI will know that they can be very painful, and their effects can rapidly escalate if a person is left in a soiled incontinence pad (see my blog post on incontinence here). Dad would sometimes hold his head – did that mean he had a headache? The atmosphere in his care home was often very oppressive, and occasionally family members would have headaches whilst visiting dad, so it wasn’t inconceivable that he may have one too. When dad became unwell with upper respiratory infections he was often given paracetamol, mostly to control his temperature, but it is highly likely that he was also suffering with a sore throat and possibly ear or sinus pain too; we never knew if his low dose of paracetamol was enough to give him relief from all of his symptoms.

However, perhaps the most startling example of the ‘guessing game’ relating to dad’s pain management came during one particular inpatient experience. Dad was in hospital for pneumonia and had recovered quite well from initially being very ill. The ward staff were used to dad being quiet, but as he began to feel better he became more vocal. On routinely checking dad’s notes we noticed he’d been written up for morphine and was being given other pain medication. We asked why, and were told that as he was making so much noise he must be in pain.

We pointed out that dad was most likely hungry. We suggested giving him some food (something hospital staff were generally very reluctant to do due to his swallowing problem). Unsurprisingly, once his tummy was full, dad was contented. The noise he was making was the only way he knew to articulate his hunger, which only goes to prove how easy it is to misinterpret what someone with dementia is trying to alert you to when they are unable to communicate that with clear conversation.

The key to understanding when someone with dementia is in pain is often down to knowledge of the person. If they can speak to you clearly and concisely that’s great, and certainly in the earlier stages of dementia that should be possible, but one of the problems we encountered with my dad was the differences that developed between what he said and what he meant.

So for example, someone can say they are not in pain when they actually are. They aren’t trying to deliberately mislead you; they may simply not understand the question, be unable to find the words to reply accurately, or indeed may not want to be a burden or ‘put you to any trouble’. They may not recognise a feeling they have as a pain, or could become confused about what is meant by the word pain.

The key to being a good pain detective is multifaceted. You need to understand the person’s history – do they have any known conditions or problems that would suggest that they could be in pain? Have there been any recent incidents or infections that could be causing pain, or is there any possibility that there could be but you don’t know about them? Has their behaviour pattern changed? Have you studied their expressions and body language?

The last two points are especially important when you are trying to detect pain. If you are examining the person, watch them closely to see if they behave unusually (that is unusually for them), or produce facial expressions or other body language that isn’t usual for them. Holding their hand whilst doing a physical examination may produce involuntary movements from them that suggest pain in the area you are examining.

It’s important never to assume someone is in pain, but also not to assume they aren’t if anything about their movement, mood, interaction or general health and wellbeing has changed. People have been known to continue moving when they have a broken bone and for that broken bone to go unnoticed as a result. It’s also important not to overmedicate, or assume that palliative pain relief is needed when any doubt exists as to whether someone is nearing the end of their life.

The side effects of any pain relief medication also need to be taken into account if other changes in a person become evident during the time they are receiving this medication. Anything that is likely to make someone drowsy or upset their stomach will mean they require close supervision. Medication should also be regularly reviewed to see if it is still necessary; in my view it is poor practice to simply leave a person on a medication unless there is a clear need for that medication.

We should never lose sight of the fact that just because someone is living with dementia it doesn’t mean that they don’t feel physical pain. Not being able to articulate something doesn’t mean you don’t feel it and aren’t longing for someone to make that pain go away. Our role is to help people with dementia to have the best quality of life possible, and minimising physical pain is a big part of that.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886