Tuesday 30 October 2012

Keeping it relevant

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

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

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

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

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

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

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

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

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

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

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

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

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 24 October 2012

The best of your ability

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

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

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

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

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

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

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

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

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

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

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

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 17 October 2012

Fear factor

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

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

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

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

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

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

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

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

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

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

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 10 October 2012

Remember, remember

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

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

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

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

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

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

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

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

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

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 3 October 2012

Time well spent

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

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

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

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

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

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

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

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

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

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886