Wednesday 27 November 2013

Your voice

Sometimes I meet people who seem genuinely perplexed by my passion for the work that I do. Trying to convey the warmth and genuine love I have for my vocation isn’t always easy, particularly amongst those with very negative viewpoints of older people and people living with dementia. In my mind, however, if I can plant just one small seed of positivity into their mind then our conversation will have been worthwhile.

As those who have followed my work will know, I began D4Dementia for two main reasons: To help others and to ensure that the legacy of my dad’s life makes a real and lasting difference to society. What I never imagined was that just 18 months later I would receive a very prestigious award.

Being named ‘Best Independent Voice on Older People’s Issues’ at this year’s Older People in the Media Awards is undoubtedly the highlight of these last 18 months. My only sadness is that my dad isn’t here with me to share in this award, and be part of the photos and the memories, but I hope that he is very proud of the legacy his life is creating.

Winning 'Best Independent Voice on Older People's Issues'
Winning 'Best Independent Voice on Older People's Issues'
I have been truly blessed to receive so many congratulatory messages, every one of which I am very grateful for, and as you can imagine my family, and in particular my mum, are incredibly proud. This award is about more than just my personal celebrations, however. It is a huge honour to have received it, but it is an even greater responsibility.

Our ageing population is growing on an unprecedented scale. The prevalence of dementia is also increasing, as are the numbers of people living with other long-term health conditions that require health and social care support. Against this backdrop there are also many other factors that are affecting older people’s quality of life. Do we have enough suitable housing? Can our elders manage to keep warm and eat healthily with the incomes that they have? And with more older people living alone, how do we support them with social interaction, combat isolation and loneliness, and ensure that they can live a meaningful life?

Huge questions that sadly I don’t have all the answers to. My role, however, is to continue to ask these questions, support campaigns that try to address key shortcomings in society (including the newly launched ‘Silver Line’ that offers older people a free, 24 hour, confidential helpline), and provide a voice to articulate the issues that concern older people. I have never, and will never understand why as a society we struggle so much to support and care for our citizens as they get older, but a particular tweet recently bought an element of thinking around this issue into sharp focus.

Put simply, the person sending the tweet said that as a society we lose interest in any group of people who do not contribute monetarily to our country. Although this goes vehemently against my viewpoint, I have to admit that I fear this person is painfully accurate in their observations. It has long bothered me that in a world obsessed by celebrity, image, technology and money, many older people are deemed irrelevant, surplice to requirements and a burden on society.

I’ve written previously about how we don’t see older people in a positive light because they aren’t young and sexy. Many older people simply couldn’t care less about the superficial nature of celebrity and image, and frankly I would argue that they have a very good point! Some older people have embraced technology (my mother had a smartphone before I did), but many others prefer more conventional methods of communication and avoid social media and having a house full of wires and ‘devices’. Should they be ostracised from society because of this? No of course not.

Meanwhile, for many people retirement means a fixed income that over time can leave them struggling to cope against the rising cost of living. I would point out, however, that people on a pension are still taxed once their income goes over a relatively meagre threshold, and of course many people end up having to use their life savings, and even sell their home, to pay for care.

Despite all of the negative perceptions of older people they are still consumers, contributing hugely to the economy in the retail, tourism and leisure sectors to name just a few. They were the people who pioneered the early inventions that have led to the technology we have today, and indeed defended the freedoms we now take for granted. Whatever Mr Google can tell you, he will never be as engaging as listening to an older person imparting their unique brand of knowledge and wisdom, complete with the wrinkles and grey hairs that are the trademark of a life lived to the max. And perhaps most engagingly of all, our elders offer us a once-in-a-lifetime opportunity to connect to generations who have now passed away, a connection that we often take for granted until it is too late to make it.

I’m proud of our older people. Their stoicism and resilience. Their dignity and wisdom. Even in the darkest days of my dad’s dementia, he had the fundamental qualities of being a good and decent person that many people much younger than him could learn from. Our elders have an elegance that a lot of my contemporaries cannot match, and they have a charisma that draws you into their stories and memories that I only hope I can match when I’m in my 70’s, 80’s and 90’s.

Being positive about ageing is about more than just pointing out what makes our older people so wonderful, however. It’s about realising that, health and luck permitting, we will all be older one day. Technically, as every day goes past we take another small step towards being an older person. Personally I want to approach those days with positivity, enjoying the wisdom I’m accumulating and the stories I will have to tell, and in a society that I know will value me.

Receiving my award gave me a particularly special story to tell, and I hope that as YOUR ‘Best Independent Voice on Older People’s Issues’ I will make many more.

Thank you for all your support.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 20 November 2013

Caring for carers

For many years I’ve thought of carers as the forgotten millions. As a family we certainly felt forgotten on many occasions during my dad’s 19 years with dementia, both before and during his years in care homes and his spells in hospital, and given what I hear at conferences, events, through my writing, social media and email, little has changed.

There is just one subtle difference though – I feel the voice of carers is becoming louder, more persistent and more difficult to ignore. Slowly but surely there is a movement growing in momentum, spirit and immovability that will, I hope, one day ensure that the needs, rights, knowledge and skill of unpaid carers is recognised and enshrined in the fabric of society.

If anything it amazes me that health and social care have for so long undervalued the role of people who care for a loved one, be they a family member, friend or neighbour, near or far, living with complex needs and long-term conditions or someone older and/or immobile who requires crucial daily living support. There is no archetypal carer – they may be young or older or anywhere in between. They will undoubtedly have a life of their own that they will often indefinitely put on hold. I guarantee the majority will be driven by love and devotion, but exhaustion and frustration will also play a big part in their life. What unites them all, however, is the need for far greater support and recognition.

Support is vital because you simply cannot be a 24/7 carer for what may be an unspecified amount of time before the cracks begin to appear in your own health and wellbeing, your caring suffers and therefore so does the person who you are caring for. When the carer breaks down and then needs care themselves, there is often no one to care for them and indeed no one to step into their caring shoes, meaning effectively two people become highly dependent on society.

Recognition goes hand-in-hand with support, because if a carer is recognised as a carer there is more chance that their needs will be met, hopefully avoiding that crisis situation. Recognition goes further than this though. It is about seeing a carer and the person that they are caring for as a joint entity, rather than seeing the vulnerability of the person needing care and totally ignoring how that vulnerability also makes the carer very vulnerable. Recognition is also about valuing carers – their knowledge of the person that they are caring for is vital for any professional providing healthcare or social care for that person. That knowledge must be fully integrated into the provision of professional care.

How we make this happen in relation to healthcare is part of the new NHS ‘Commitment for Carers’ – an initiative that recognises that the health service can and must do much better when it comes to responding and reacting to carers, their needs and their knowledge. It must be hoped that this ‘Commitment’ will forge a workable, long-term plan that will benefit carers, those that they are caring for, and the professionals who should be partners in that care provision.

Very close to my heart, of course, is how we support those who are caring for a loved one with dementia. Very early on in the focus on dementia, the Dementia Action Alliance (DAA) was born (I am a national member), and from that we now have the DAA Carers Call to Action (CC2A). The aim of the CC2A is to, “Ask the right questions, explore examples of good practice and find solutions to address the needs and rights for family carers of people with dementia.”

The fact that any of these initiatives exist at all is, ultimately, down to carers themselves. Despite being people with exceptionally busy, stressful and hugely demanding lives they have found time to speak to media organisations, effectively used social media to highlight their experiences and, perhaps most powerfully of all, have spoken out at many key events, often supported by fantastic teams from carers’ charities.

In the case of carers of people with dementia, this has often been through Dementia UK’s ‘Uniting Carers’ – a group that I am very proud to be a member of and very sad to see disbanding. Fellow members, alongside people with dementia, blew me away at last year’s Dementia Congress, and this year I was literally moved to tears hearing their often heart-breaking accounts.

Sheila Wainwright’s story in particular was something that a packed Congress hall of people with dementia, carers, health and social care professionals, business people and media representatives, alongside Care and Support Minister Norman Lamb MP, really needed to hear. Recounting her husband’s dementia, and the impact it had on both of their lives, Sheila told of the "Shear daily misery" of their life, how "No one" answered her questions, and that over the years "Many people came and went, and came and went" but there was simply no continuity of support for her or her husband.

Sheila admitted that she was, "'Planning how to end our lives before a call to Admiral Nursing Direct saved my life." Her husband eventually passed away in hospital after an agonising end to his life, with Sheila movingly recalling the actions of a nurse as her husband was finally at rest, "That sprig of flowers put on his chest when he died was one kindness I will never forget."

It can never be acceptable that we wait until someone’s death before we show kindness to their carer who has valiantly stood by their side as, in Sheila’s words, her husband, "Screaming and snarled, pooed in the shower and pushed it down the drain, lost the ability to walk and talk, and went from 13 stone to just 7 stone when he passed away."

Sheila said she felt bereft and bewildered. I had tears in my eyes from the pain in her voice and her story, and I know for certain that I’m not the only person at this year’s Dementia Congress who was similarly emotional. Although Sheila’s husband is at peace, the psychological ramifications of caring for him and all of the struggles that she faced live on two and a half years later. It is for Sheila, and everyone who walks in her shoes, that we MUST ensure that we care for carers.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 13 November 2013

100 not out

Back when I began D4Dementia I have to admit I never thought I would make it to 100 blog posts. Indeed I was unsure I would make it to 10, and even more unsure if anyone would actually want to read them!

How wrong I was. My humble little blog has become beloved by thousands, and I am eternally grateful for the support of each and every one of you, whether you are a one-off reader, an occasionally viewer or a regular to these pages.

Despite the fact that many months have passed since my first post, and so many exciting things have happened for me in that time, the values, passion and dedication that persuaded me to start D4Dementia remain as strong as ever.

Back on 20th May 2012 I told you that following my dad’s passing just a month earlier after 19 years with dementia, I was on a quest to, “Provide support and advice to those faced with similar situations, inform and educate the wider population, promote debate, and campaign for improvements in dementia care and changes to the care system in general.”

My appraisal of this, on my 100th D4Dementia blog post, is that this quest is coming along nicely. I’ve learnt that I will never succeed 100 percent with any of these aspirations no matter how successful and sought after my work becomes, simply because life is about learning and sharing and reaching every single person, family, professional and organisation will always be tantalisingly beyond reach. But that is exactly how it must be, since to fully succeed would be to stop trying, and I don’t ever plan on doing that.

I’m not sure if my passion in itself is unique, or simply just uniquely driven, but I know it is heartfelt and sincere, and no matter how many years separate me from the day of my dad’s passing, he will always be the focal point for everything I do. He gave me so much to be proud of in him as a father, a man, a role model and a person living with dementia – nothing can or ever will erase those memories.

As D4Dementia has grown in popularity, so more doors have opened for me, and I’m very excited about what 2014 holds for my work. There have been a few references to my ‘celebrity’ and ‘fame’ recently – all highly embarrassing. I’m just a normal girl, from a very humble background, sharing my experiences and trying to make a difference. That is not to underestimate my determination, but not to overstate my view of myself either. Hard work, humility and respect were my dad’s watchwords and they will always be mine.

So I guess the only way to conclude this post is to raise a glass to another 100 D4Dementia blog posts – right now I’m unsure they will ever happen, but then I’ve been wrong before!

Keep reading, enjoying, learning, sharing links and recommending D4Dementia, and I promise I will endeavour to keep on making all of those activities worthwhile. With your support everything is possible.

Thank you.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 6 November 2013

Does the world really stop?

There is a prevailing view that when someone is told that they have dementia, everything in their life must stop. If they were working or studying that must stop. They must stop driving. They stop being spoken to and start being spoken about. They stop being given tasks to do, or even being allowed to complete simple tasks that they feel comfortable tackling.

Any deviation from this is considered to be a lack of compliance, but since when did people with dementia have to become compliant? Being told you have a terminal illness is likely to make most people want to become as incompliant as possible. A diagnosis of many other terminal illnesses is often associated with the formation of a bucket list, a compendium of all the things someone wants to achieve, all the places they want to visit and all the people they want to meet. Not with dementia though.

We expect people with dementia to just crawl home and stay there until potentially a medical emergency brings them into contact with their local hospital. Then they will encounter the giant beast that is healthcare, followed by social care, followed by huge confusion and frustration for a person who is likely to already be hugely confused and frustrated due to their dementia.

So is this mismanagement on a grand scale or just a fact of life? Personally I don’t think this reality is right for anyone. No one is likely to live well with dementia if their life is reduced to a model of isolated dependence, where joy and happiness is in short supply and irritation and depression are the daily norm.

I’ve written previously about the need for everyone with dementia to be given the opportunity to achieve, and that can be achievement at every stage of dementia. You may associate achievement with hitting huge milestones and pushing yourself to extremes – for someone with dementia it may be something as simple as making a cup of tea or buttering some bread, but it’s achievement, it is an element of self-sustainability and it’s priceless.

I lost count of the young doctors who saw my dad during his 19 years with dementia and questioned the point of treating a man who a) had a terminal disease, b) was immobile (as dad was for many years), c) doubly incontinent, d) had a swallowing problem (for the last four years of his life) and e) apparently in their narrow-minded judgement, had no quality of life whatsoever.

He did, in fact, have quality of life, just not what most people with limited understanding of dementia perceive to be quality of life. He enjoyed his food and had an amazing appetite. He loved listening to music and would sing along. He rested peacefully and relaxed with simple pleasures. He looked forward to going outside and would snooze in the sun under his panama hat. He was emotionally alert and showed that when he saw the people he cared about. He was loved and showed love to those he cared for. All of these things represent quality of life.

My dad had that, however, in spite of the systems that try to wrench this away from people with dementia. Systems that want to dehumanise and disempower people with dementia, pretty much from the earliest point in their dementia to their last breaths at the end of their life. My dad had quality of life because he had a family. How many people don’t have an actively involved family or indeed any family at all? Relatives have been known to run for the hills when they hear that a member of their family had developed dementia (some fearing that it is, in fact, contagious).

My dad’s world could easily have stopped. I’m sure on some days it did, no one in our family would claim to be a superman or woman – none of us were capable of removing every negative feeling and experience from the life of my dad, however much we tried. That is, however, the point: we did at least try.

For us the world didn’t stop, it kept on turning. Yes it was different, but life doesn’t stand still. It can happen around a person with dementia, or we can all make a conscious decision to ensure that person is part of their world. Indeed, to give someone the best chance of living well with dementia nothing needs to ever really stop. Yes they may not be able to carry on with a particular type of work or hobby, but there is no reason not to try something else that they enjoy, or indeed something new.

If paid employment is out of the question, volunteer, campaign and spread the word. Talk about your experiences; I guarantee that there will be people who want to hear about them – I definitely do. Driving a car may not be possible, but look into every other form of transport and make sure that you are getting out and about regularly. Tasks may need some supervision occasionally, but as observers we should never jump in to ‘correct’ unless it is absolutely necessary to prevent harm. It’s ok to do things ‘wrong’ – it’s better to have tried, experimented and come up with something unique, than to have sat back and decided that you can never do anything ever again and it’s time to just give up and admit dementia has won.

Throughout history the most innovative people have often been incompliant – the mainstream wasn’t for them, and they set about putting their own mark on the world. In many ways, I’m hugely incompliant and actually proud of it. Facing up to a future with dementia may be terrifying, but let it also be liberating. Make your bucket list and don’t let your world stop – it’s far harder to start again than it is to just keep going.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886