The private world of incontinence

With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at continence.

In June 2013 I wrote a blog entitled ‘An urgent need to understand’, which talked about some of the experiences we’d had with my dad’s incontinence and ways in which a person can be supported to maintain their continence. In that blog I said:

“The devastation that incontinence can cause both the person with it, and potentially a spouse or family member who is caring for them, is immense. The more private a person is the harder it will be felt, which was certainly true for my father, who was incontinent for nine years.” 

Continence, perhaps more than any other issue, is strongly linked to privacy. In my experiences as a mum I know that not long after a child is potty trained they begin to want privacy when going to the toilet. Such privacy soon becomes the norm for the rest of their life, unless incontinence accompanies a progressive health condition like dementia, in which case needing the support of another person, whether they are your own family or a health or care professional, becomes the new norm. Just because it’s the norm, however, doesn’t mean it feels normal or will ever feel normal.

Continence problems are strongly associated with ageing, but certainly don’t exclusively affect older people. Last month marked World Continence Week, with a statistic that bladder weakness alone affects 1 in 3 people and is more common than hayfever.

Continence has come onto my radar many times since I wrote ‘An urgent need to understand’. Professionally this has predominately come through my training and mentoring consultancy work, with one particularly striking example being when homecare staff from one of my consultancy clients came to me to discuss a lady living with dementia who was repeatedly developing bladder infections and soiling herself. 

The infections increased the lady’s confusion, and despite trying to provide optimal support staff said that they felt they were failing this lady every time she got another infection. I encouraged staff to really think about how the support being provided was responding to this lady over the course of each 24-hour period. Care staff often only analyse the time they spend with the people they support, rather than what is happening when they aren’t there.

It transpired that this lady was only using the toilet when staff weren’t present, and would often put off going to the toilet for many hours purely because she was confused about the time care workers would visit and concerned about her privacy (staff learnt that this lady had had a bad experience with a previous care worker during a trip to the toilet).

Many different approaches were taken to resolve this issue, including ensuring the lady had a dementia clock so that she knew what the time was, a personalised schedule that was clear to her for when her care visits were, and a lock on her toilet door (that could be opened from the outside in an emergency).

Simple measures, but alongside staff really understanding this lady’s need for privacy for the first time they proved to be the difference in supporting this lady to use the toilet more regularly, thus reducing the recurrent bladder infections she had and improving her quality of life as she soiled herself less. 

I would always encourage anyone supporting a person who is struggling with continence to think about the bigger picture, considering how the environment and the person’s routines and plans for the day are affecting their continence. If the person’s day-to-day life isn’t supporting them to use the toilet as often as they need to, problems are inevitable.

Continence hasn’t just come onto my radar through my experiences with my dad and my work, however. On a personal level, continence is something that my midwife was really open with me about during my pre and post-natal care when I had our daughter. 

Any lady who’s has a baby will have heard the iconic words, “Do your pelvic floor exercises!” Pelvic floor exercises aren’t just for women who’ve recently had a baby though. I’d argue that they are important throughout all of life, as the stat from World Continence Week ‘Prolapse can affect half of all women over 50’ shows. Although pelvic floor exercises alone won’t cure prolapse, they are often recommended alongside other treatments.

I’ve always felt that preventing incontinence is a great deal easier than treating the physical, mental and emotional effects of incontinence purely because incontinence is about so much more than just wearing a pad. As I said in my ‘An urgent need to understand’ blog:

“Changing our attitudes towards continence, and breaking down the taboo’s associated with going to the toilet, must be a key priority if we are to improve the care provided to everyone who is living with dementia.”

Until next time...

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The rainbow of dementia

This week will mark what would have been my dad’s 91st birthday, and later on in April, the 6th anniversary of his passing. These milestones have left me reflecting on the last 19 years of dad’s life, how dementia crept into his life and year by year gradually overwhelmed him.

The picture painted of dementia in 2018 seems to have two distinct hues - the brightness of those who are living well, or as well as they can, and the darkness of those nearing the end of their lives, with the multiple physical health problems that I remember only too well. Yet as I think back over those 19 years, it was never as simple as two different hues for my dad.

If anything, it was much more like a rainbow, with the red roughly representing the beginning of my dad’s dementia (which was a gradual onset rather than a distinct change from one day to the next) and the violet representing the end of dad’s life. As the curves change colour, and reduce in size, so my dad’s dementia deteriorated, leaving him with fewer skills and more struggles.

Why a rainbow though you might wonder? It’s bright and cheerful and associated with the freshness and beauty that follows the darkness and rain. I certainly haven’t chosen it because I’m a 100 percent devotee of optimism where dementia is concerned. My positivity has always been tempered by stark memories of times that whilst difficult for me, were undoubtedly far worse for my dad.

I’ve chosen a rainbow because to me it represents balance: The brightness of the colours suggests something special and positive is possible at any point in a person’s dementia, but the reducing curves remind us that the struggles, or the paddling as my friend Kate Swaffer describes it, only becomes more pronounced.

If I think about my dad’s 19 years with dementia - certainly for the majority of the first 10 years - whilst the difficulties gradually increased, my dad had independence, looked after himself reasonably well for maybe five of those years, could read and write for the early years, follow TV programmes and sports, had a fairly good command of language, was able to participate in conversations, and certainly wasn’t slow in articulating his viewpoints. By 2018 standards, he would have made a good Dementia Diarist, a popular DEEP (Dementia Engagement and Empowerment Project) or DAI  (Dementia Alliance International) member, and an engaging public speaker (although my optimism on all of these fronts is tempered by knowing that my dad was a fairly private man by nature, so maybe wouldn’t have wanted to speak publicly).

Those are probably the red, orange and yellow years. By the time we get to the green and blue on the rainbow, dad’s in and out of hospital, and moving from a residential care home to a nursing home. For my dad, the key turning point is his larger stroke, and from that day confusion, communication difficulties, urinary incontinence, changed behaviour and a whole raft of inappropriate interventions (most notably antipsychotic medication) follow. My dad is becoming a much more stereotypical example of what society thinks about when it thinks about a person with dementia.

The indigo and violet years are characterised by further physical decline, with immobility, double incontinence and four years of dysphagia for my dad to cope with before the end of his life. This is the picture most people conjure up when they or a loved one are diagnosed. But as much as the ‘red’ years don’t go on forever, so most people with dementia don’t jump from ‘red’ to ‘violet’ either.

I am a great believer in seeing every face of dementia for what it is: The person living as well as they can in the red to green curves of the rainbow is giving hope to every single individual who has just been diagnosed or will be in the future. Without that hope, everyone just fast forwards to a picture of what 'violet' looks like, and that is only going to lead to more rapid deterioration with the added pain of potentially severe depression, hopelessness and even suicidal thoughts.

The person living in the blue to violet curves is never going to offer the same type of hope. They are coping with a greater array of physical health problems and are increasingly reliant on others for their care and support. Our perception is that brightness is fading, but what we learn from these individuals about the human spirit is perhaps even greater than their more articulate peers. Moreover, the qualities we find in ourselves from becoming caregivers represents invaluable, albeit sometimes very painful, life lessons.

Aside from my dad and the people I’ve known personally who are affected by dementia, I’ve met so many other individuals through my professional work who are living with dementia, coping (or not coping, and yes, sometimes suffering) and every single person has taught me something. As my dad took his last breaths I learnt about peaceful serenity. As I see a person living with dementia giving a conference speech, I learn about their strength to stand there and tell their story (often without notes, something I cannot do). As I see a person living with dementia in a care home trying to regain mobility after a broken hip, I learn about determination. As I read a book, a blog, or a social media post from a person with dementia who is laying bare their personal experiences, I learn more about living with dementia than I ever could from a textbook. As I see someone managing a few mouthfuls of food, and breaking out into a satisfied smile that they’ve outwitted dysphagia for one mealtime, I see a will to go on living despite the obvious struggles.

When my dad's life started to change, which in hindsight was when he began developing dementia, I had no idea we had 19 years ahead of us. As every year went by, we just tried to make the most of whatever situation we found ourselves in and give dad the best quality of life possible. I certainly don’t think we always managed that, and I dearly wish I’d known then what I know now.

Did my dad live well? Yes sometimes. Did he suffer? Yes sometimes. But when I reflect now, the fact that it’s a rainbow I gravitate towards, feeling an affinity with the brightness rather than the reducing curves, reminds me that although dad is gone we lived those 19 years together, and for all their ups and downs there was a beauty in the love that bound us together and that shines on.

Until next time...

You can follow me on Twitter: @bethyb1886
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Wellbeing and dementia

'Wellbeing' is everywhere these days. Health and social care professionals are eulogising about it and it now has an important place in legislation, with the Care Act featuring wellbeing prominently. But what exactly is it, and how do we enable people with dementia to feel a sense of wellbeing?

The Oxford English dictionary definition of wellbeing, as stated online is:

"The state of being comfortable, healthy or happy."

While my trusted dictionary that has been with me since my early teenage years tells me wellbeing is:

"The state of being healthy, happy or prosperous."

Instantly, the concept of being healthy, whilst living with any long-term condition - be it dementia or something else (and often more than one condition at any one time) - seems a contradiction in terms. Once health has been compromised, is wellbeing merely just a tokenistic ideology?

I personally don't think so. If you subscribe, as I do, to the firmly held belief that you should always see the person before their dementia, then wellbeing is still eminently possible for anyone living with dementia. The basic definitions of wellbeing, namely being comfortable, happy and prosperous are also not precluded by dementia, although in the case of financial prosperity, it is true to say that many people living with dementia enjoy anything but a prosperous lifestyle, given the double whammy of low income and high care and support costs.

In an ideal world, happiness and comfort should be the preserve of everyone, although as we know that is often not the case. Systemic failures of health and social care systems, in-cohesive communities, isolation, lack of understanding, stigma and fear are some of the common barriers to experiencing the happiness and comfort associated with wellbeing, and although I'd be the first to admit that these issues are being addressed in some parts of the UK, we undoubtedly still have a long way to go.

Reflecting on my dad's life during his 19 years with dementia, I've often wondered about his experiences of wellbeing. Ultimately only he could define whether or not he experienced a sense, or indeed a reality of wellbeing, but as a close observer I think there were times of happiness and contentment - particularly when we were relaxing outside in the sunshine - that felt to me to be the very embodiment of wellbeing.

Comfort is more tricky to quantify, especially in dad's latter years with dementia, which are often the times it's particularly difficult to ensure a person's wellbeing. In dad's pre-diagnosis years, I would say he was fairly comfortable - living in his home, surrounded by his things and doing as he pleased has a definite element of comfort to it, albeit that has to be seen against the backdrop of his dementia symptoms, which during those years included hallucinations, paranoia, confusion and a gradual inability to look after himself (See my ‘Ten lost years’ blog post).

But in my dad's last few years, I'm less sure about how comfortable he honestly was. I wasn't sitting in his chair, wearing those incontinence pads, having to be dressed by others, being hoisted, shuffling down the seat constantly and being helped to eat. Even the best care practices in these circumstances don't necessarily always result in comfort for the person being cared for, which is partly why role-play training, where a care worker learns what it feels like to be hoisted, helped to eat and wear incontinence pads, is so effective in educating care workers about what the person they are caring for is potentially feeling.

That said, we did everything we could to make life more comfortable, by getting dad his own special chair, making sure his pads were regularly changed, buying him the nicest clothes we could find and trying to be with him for his mealtimes to ensure he had as much time as he needed to eat. We didn't really think of it in terms of trying to create a sense of wellbeing for him, but in hindsight you could easily interpret it in that way.

Now wellbeing is such a prominent theme in care and support, it's a really good prompt for thinking about how you are going to create and enhance wellbeing for a person with dementia. My general view on this is to keep it simple and never assume that just because a person's dementia has advanced that wellbeing isn't possible for them. Start with one of the key building blocks in every interaction – communication. Everything from greeting a person and introducing yourself all the way through to the person-centred approaches that are vital in dementia care. Also read my ‘Talking the talk’ blog and my blog on expression, ‘Don’t ignore me’.

Focusing on the definitions of wellbeing as mentioned earlier think about:

•   Supporting a person with dementia to find happiness in aspects of daily living - examples include: wearing a favourite outfit, enjoying some pampering during personal care, a favourite meal or drink, exploring nature, participating in a hobby, getting out and about, reminiscing, and entertainment (like books, music or films) – the only limits are the interests of the person with dementia and the imagination of the individual(s) supporting them.

•   Comfort is achievable through elements like environmental changes, personal care that is responsive to the individual’s needs, foods and drinks that tickle taste buds and satisfy, peaceful sleeping, and timely and appropriate care during periods of ill-health (for example chest and urine infections).

•   Prosperity in a financial sense is of course down to individual circumstances, but prosperity in terms of an emotionally enriching life is possible through opportunities to learn, promotion and support of individuality, kind, compassionate and dignified care, feeling loved and wanted, having hope and being respected.

In essence though, this really is just the tip of the iceberg. Wellbeing is such a huge topic, I’m sure I will return to it again in the future on D4Dementia.

 

Until next time...

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A precious gift

I've often thought about what the most precious gift is that you could give a person with dementia in the absence of a cure. I've written before about the importance of love, but I suspect that if I asked a cross-section of people what they think the most precious gift would be, money would be a popular answer.

Unlimited funds would give the person with dementia the chance to do all of the things that they’ve wanted to do, the ultimate bucket list. Of course money can buy you many things – amazing experiences, expert care, a lavish lifestyle and the best of everything – but wealth of that magnitude is the preserve of a select few. Most of us don’t have vast sums to gift to others or have an inexhaustible stash of cash put aside to spend on ourselves.

In my view, giving your time is a more precious gift than money and it’s inclusive; we can all give our time to a person with dementia and it doesn't cost anything. Most people hugely underestimate the difference that can be made by giving their time, not realizing that it is a gift that forms the cornerstone of quality of life – without it every other attempt to enable a person to live well with dementia is likely to fail.

Many people have reported that when they were diagnosed with a type of dementia they went through a period of mourning the fact that dementia, being a terminal disease, is likely to cut their life short. Losing years off of your life is cruel in a way that words cannot do justice to, but perhaps even more cruel is being denied the time of those around you - people who may well outlive you and yet are not willing to give you the time of day. 

A simple 'Hello my name is' as epitomized by the fantastic campaign created by Dr Kate Granger is too much for some people to manage, and yet how long does such an introduction honestly take? In our lives we've become too busy to stop and realize the gift of time, and in care settings, we’ve become too task orientated, wanting to get those boxes ticked as speedily as possible.

Your time is such a great gift to give a person you are caring for because it enables so many other amazing things to happen:

• It makes choice REAL. Giving a person with dementia time to choose between different outfits, foods, drinks, personal care options or things to do gives them ownership over what their day will be like. Rushing them because you don’t have time to allow them to think or express their thoughts takes away that choice. Giving them time also allows you to make suggestions if they are struggling with choices and support them in making their choice.

• It enables communication. As a person’s dementia advances, they will need more time to communicate with you and to understand what you are trying to communicate to them. Not giving them your time is going to stifle that communication and they will lose their communication skills much more rapidly.

• It deals with challenges. Dementia is tough to live with – anyone with dementia will tell you that. Not having the time of the people who are supporting you makes it a great deal more challenging because your memory recall will be rushed, you will struggle to follow what is happening around you, and you may begin to feel that things are happening to you, not with you. All of that leads to the common elements of ‘behaviour that challenges’. Being given more time to communicate, understand and participate means that your needs are more likely to be met.

• It supports emotions. Bottling up emotions can only lead to emotional outbursts that fuel ‘behaviour that challenges’. Giving someone your time to express their fears, anger, sadness, frustration and bewilderment isn’t easy, but by doing that you are likely to also bring about the expression of more positive emotions; happiness, contentment, peace, hope and possibly even some cheeky fun. 

As a general rule, everything that feeds into person-centred care results from giving someone your time. Everything that contributes to ‘behaviour that challenges’ generally results from not giving a person your time. That is why giving your time is such a precious gift, and why I will never regret giving the countless hours of my teen and twenty-something years to my dad. Even when that time was spent in silence, it was time well spent.

 

Giving someone with dementia your time is a gift that gives something back. You will learn from the conversation that will be created, the body language that will be demonstrated or the experience you will have in that moment with that person. The majority of what I’ve learnt about dementia has come from giving my dad, and other people living with dementia, my time. In return they've given me what I share with you on this blog. If nothing else, I hope that inspires you to give someone you know who is living with dementia some of your time.

Until my next blog post...

You can follow me on Twitter: @bethyb1886

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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'

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...

You can follow me on Twitter: @bethyb1886

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