Monday, 10 June 2019

It could be you

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 the reality of being an unpaid family carer.

I’ve blogged for Carers Week every year since D4Dementia began, and while I was looking back at the start of D4Dementia for the blog’s 7th birthday, I revisited the two blogs I published during Carers Week 2012.

‘The carers job description’ was the more hard-hitting of the two, highlighting the relentless and exhausting aspects of being an unpaid family carer, while ‘Be inspired, be very inspired’ was the complete opposite as I talked about how amazing carers are.

While many blog posts may be reactionary and news-led, these two stand the test of time with quotes that remain as true today as they were then. I began ‘The carers job description’ by saying:
“If you had to be isolated, unsupported and fight the system, would you apply to be an unpaid carer?”
The reality of isolation, lack of support and having to fight systems every step of the way is a story I have heard countless times since - often, of course, from family carers whose loved ones have dementia, but also from numerous people in other caring roles including carers whose loved ones have different health conditions, sandwich carers and parent carers.

I’ve seen carers break down talking about the struggles they face, and asking simple questions like, “Why can’t this be easier?” and, “I have no idea what to do and no one to ask.” In a public arena, arguably one of the most powerful carer stories I have ever heard came from Sheila Wainwright, excerpts of which I shared in my 2013 blog, 'Caring for carers':
“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 the Admiral Nurse Dementia Helpline 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.’”
I went on to say in 'Caring for carers':
“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’s story has stayed with me ever since, and has been joined by stories from many other carers, past and present, who I’ve met in the months and years since I wrote ‘Be inspired, be very inspired’ but who that blog could easily have been written about, particularly when I said:
“There is something that touches your soul when you hear the individual stories of how people care for those they love the most.”
These personal accounts are incredibly hard-hitting, but what we all need to appreciate is that while carer’s stories shape our understanding and provide an immensely powerful narrative that we’ve seen countless times, not least in the recent BBC Panorama programmes ‘Crisis in Care – Who Cares?’ and ‘Crisis in Care – Who Pays?’, for the people living those lives they are a real, raw reality, not something to read or watch, agree with and then at best leave the issues they raise at the bottom of society’s ‘to do’ list. As I said in ‘Be inspired, be very inspired’:
“If you are caring for someone right now, don’t ever underestimate the amazing contribution you make to society. Anyone who does not recognise that has never walked in your shoes, but may well do so one day and will then see just what this unique role entails.”
As the thoughts of charities, businesses and organisations turn to carers again for Carers Week, which is themed this year around isolation, the stats are stark:
  • One in three unpaid carers (32 per cent) looking after a loved one who is older, disabled or seriously ill has felt lonely or isolated because they are uncomfortable talking to friends about their caring role. 
  • (32 per cent) say they feel socially isolated at work because of their caring responsibilities.
  • (74%) feel their caring role isn't understood or valued by their community. An unwillingness to talk about caring has for many carers created a barrier to their inclusion at work, home and in public life.
(Data from

Add in the human emotions that lie behind those statistics and I think we can all agree that more must be done to support carers. The problem, of course, is that those who understand what being a carer really means have been saying as much for years. When this will result in actual concrete support services that aren’t a postcode lottery remains to be seen, but those who ignore this issue do so at their peril. 

There are currently 6.5 million people in the UK who are carers. Every day another 6,000 people take on a caring responsibility and there are predicted to be 9m carers by 2037. So, to quote a famous lottery slogan: “It could be you.”

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886
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Monday, 20 May 2019

We are family – A Dementia Action Week blog

With over 200 blogs on D4Dementia now, some of them approaching 7 years old this month, 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, for Dementia Action Week (DAW2019) I want to highlight a previous DAW blog and tell you Hazel and Bill’s* story.

For DAW2017, I wrote a blog entitled ‘Five things I wish I’d known before my dad’s dementia’In that blog I said:
"It may seem remarkably obvious, but dementia changes lives. It REALLY changes lives. The problem with telling people that is, until you've experienced it, you don't realise just how much."
Those words are as true today as they were two years ago, and for DAW2019 I want to share a particularly striking example of how dementia has changed one couple’s life, leaving them on the periphery of society.

A few weeks ago I had a chance encounter with a lady, Hazel, who had been diagnosed with dementia just over a year ago, and her husband Bill, in a cafe. We got chatting as they watched our 3-year-old playing and we ended up having a long conversation. 

Hazel and Bill told me they’d never had any children and were only children themselves, with no extended family. They said they went to the cafe once a month because it was somewhere they could ‘watch the world go by’. They have their groceries delivered, because supermarkets are too noisy and chaotic, and trips to their GP practice are daunting as it’s so big and impersonal with its electronic check-in system. 

Hazel and Bill live in a rural location, and said their main company comes from the birds who visit their garden and a neighbouring cat who also takes an interest in the birds! They said they’d never met the owners of the cat - new people had moved into their neighbourhood a few months ago but ‘kept themselves to themselves’.

Reading Hazel and Bill's story, it would be tempting to think that their circumstances are unique. After all, most people have some family and go out more than once a month. Except I don't believe Hazel and Bill's circumstances are unique. If you've never discovered Ageing Well Without Children I urge you to have a look. Their stats tell us that the number of people over 65 without adult children is currently in excess of 1.2 million, and is set to rise to 2 million by 2030. Moreover, in these days where you can order online and get just about every conceivable item delivered to your home, you don't need to go out. I certainly avoid the shops with our toddler!

For people like Hazel and Bill, being so isolated can have some undesirable consequences. It’s known that social interaction is a key component in reducing dementia risk, and if a person has already developed dementia, social interaction can help to improve their quality of life and wellbeing.

Then of course there is the impact on Hazel and Bill’s relationship. As Hazel built a lego castle with our daughter, Bill said to me quietly that he wonders how he will cope as Hazel’s dementia progresses. He says he’s keeping their heads above water for now, but feels lonely and worries about what the future might hold. 

Hazel and Bill left the cafe when more customers arrived and it became too noisy for Hazel. Bill said it was best to embark upon the drive home before Hazel became too restless, as she struggles with the movement in the car and it’s getting harder and harder to persuade Hazel to even get into the car now.

They both said that watching our daughter had been a joy, and they hoped to see us again. I made some suggestions of support mechanisms that Hazel and Bill might want to access, including the Admiral Nurse Dementia Helpline, the Dementia Engagement and Empowerment Project (DEEP), Dementia Carers Count and Together in Dementia Everyday (TIDE), but I’m not sure they will ever make those connections. Perhaps most tellingly of all though, when I asked Hazel and Bill if they had ever attended any local support groups, or accessed any dementia friendly services, Hazel replied and said: “We used to go out more, but we don’t fit in now I’ve got this” (and pointed to her head).

The sadness I felt at that last comment has stayed with me, driving my desire to improve the lives of people living with dementia. I hope it might have the same impact upon you too.

So, how do we reach out to people like Hazel and Bill? They rarely have contact with any services, so opportunities are few and far between. That busy GP surgery is one contact point, and their Memory Clinic appointment(s) would have been another. Then there is the cafe - the one place Hazel and Bill go to of their own free will. I asked the waitress who came to clear our table if it was a particular goal of theirs to be welcoming to people with dementia. She said no, adding with a smile: “Our customers are our family.”

As individuals we can all do our bit to make people with dementia feel included and welcome, no matter who we are or what our service is. We don’t have to do it in a formal way - every way helps! And I don’t believe that it requires any particularly special skills - offering a safe space, a friendly smile and a simple enquiry about how someone is, or asking if you can help.

We can all be people of action this and every week of the year, adopting that motto from the cafĂ© – ‘We are family’. 

(*Names changed to protect identity)
Until next time...
Beth x

You can follow me on Twitter: @bethyb1886
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D4Dementia 7th Birthday

On 20 May 2012, I began D4Dementia with this simple introductory post: Welcome to D for Dementia.

Since then the blog has been read by thousands of people around the world, and I’ve had countless comments, requests for help and stories shared via email or social media. For every person who has ever read my blog, or taken the trouble to share it or comment on it, thank you. I appreciate all of your amazing support.

In preparing for D4Dementia’s 7th birthday, it occurred to me that I'd never actually asked my readers what you think of the blog in an organized, analytical way. So I created and published a 5-question survey on 20 April 2019 to gather that feedback. 

Thank you to everyone who completed the survey. I’ve loved reading your responses and want to share some of the information I’ve gathered.

Firstly, I asked how often you read my blog – almost every respondent said monthly, which is fantastic considering I publish a new blog monthly. Then I asked if you had a favourite post on D4Dementia. Most respondents didn’t, but those who added an optional comment pointed to posts including the following:

Then I asked for your comments on D4Dementia. These are a selection:

Question 4 asked what is most important to you in blog content. You can see the answers below, with 'Providing practical solutions' and 'Drawing on personal experiences' as the most popular choices.

Finally, my last question asked about topics you’d like me to cover in future blogs. Some of the suggestions that were made have already been put into my workplan, but to address two comments that I probably won’t be writing stand-alone blogs about:

"I'd like to know more about your work and impact in the sector."

Please see my website for more information.

"More about co-housing with students/young people."

I would suggest reading about the work of Homeshare and Shared Lives Plus.

Huge thanks once again to everyone who reads my blog and everyone who contributed to the survey. I hope you continue to enjoy D4Dementia, and please do keep in touch with your comments, queries or questions.

Next up, my Dementia Action Week blog: 'We are family'.

Beth x

You can follow me on Twitter: @bethyb1886
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Monday, 15 April 2019

Experiences of loss

With over 200 blogs on D4Dementia now, some of them approaching 7 years old next month, 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 loss.

Losing my dad

One of my most popular and shared blogs on D4Dementia is ‘End-of-life care: A very personal story’. I wrote the blog less than two months after my dad had died, and with my emotions still very raw I began the blog by saying:
"Planting up my father’s grave recently, I found my mind wandering back to our last few days with him, painful in so many ways and yet hugely comforting as well. Nothing is more important to me than knowing that we spent all day every day with dad during that time, that we were with him at the very end, and that he had what I would describe as outstanding end-of-life care."
I’ve been back to plant up dad’s grave many times since I wrote that blog, most recently last week to give it some spring colour as we marked what would have been dad’s 92nd birthday. That was the first time our daughter could really participate in the gardening, and my feelings watching her digging little holes and helping to arrange the plants are something I can’t quite find the words to describe. It’s the closest she will ever get to my dad, which is a huge sadness as I know my dad would have adored being a grandpa and he never got that chance. The emotions may not be as raw now, but dad’s physical absence from our lives means that there will always be a missing piece in our family jigsaw. 

Loss from a distance

Very sadly I’ve had further personal experience of loss recently as my father-in-law passed away in South Africa, just 15 days before the 7th anniversary of my own dad’s passing and having lived and died from the same type of dementia – vascular dementia. Experiencing bereavement from a distance, having not been there to support my in-laws, as well as supporting my other half as he comes to terms with the loss of his dad, is the strangest mix of emotions, and the timing in particular has brought back many memories of my own dad’s passing. 

Distant bereavement means that you don’t have all of the practicalities to attend to, and you don’t feel remotely useful. Life is expected to carry on, and yet it isn’t the same and won’t ever be. Our parents shape our lives and the people we are – losing a figure so influential in your life is like having the rug pulled out from under you, and seven years on from losing my dad I have realised that you can never replace that carpet of stability and wisdom. All you can do is celebrate all that person gave you, and how they’ve helped you to become the individual you are.

Losing a new life

In my work life I draw on the strengths my dad gave me a huge amount, especially when dealing with any topic that involves loss. There is no denying the need to talk about advanced care planning, palliative and end of life care, loss, grief and bereavement, but while my personal experiences positively influence me as a trainer and writer they can also be painful to revisit in many different ways. 

One particular example of recent work, albeit ghost-written so I can’t signpost you to it as the author, was around how life story work can bring up thoughts and the associated feelings of bereavement(s) an older person experienced when they were younger. One of the most powerful ways I illustrated this was by drawing on the experiences of a lady I knew in her 80’s, who had heartbreakingly recalled a miscarriage as a young 20-something woman. 

At the time I never imagined this would resonate with me, but having had a miscarriage at 10 weeks last month I now know that an experience like that changes you. Other women older than me have told me they’ve never forgotten how they felt at the loss of the life they’d had growing inside them, and all I can really say is that in terms of pregnancy it reminded me of the title of a blog I wrote in 2014, ‘A loss of innocence’.

A loss of innocence not because I didn’t know miscarriages can happen, indeed my own mother had one before having me and I know many other women who’ve had miscarriages amongst my circle of family and friends, but because I will never view pregnancy, should it ever happen for us again, in the same way. As I said in my ‘A loss of innocence’ blog:
“Life is not and will never be as it was, and unlike many aspects of our existence this is something that we have no control over.”
For that lady in her 80’s recalling a loss of new life 60 years ago, as real then as the day it happened, is proof that living with loss is a lifetime’s work. Despite dementia taking many of this lady’s memories, it had left that one perfectly intact and able to torment her if the right care and support wasn't in place to help her overcome reliving those experiences whenever she saw a pregnant lady or a baby, having never been able to have children herself.

I’ve come to realise that any loss changes you, and perhaps the most important message about loss is that you don’t forget, and that’s ok. You can’t erase loss from your life however it has touched you; all you can do is find ways to acknowledge your loss and to live with it.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886
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Monday, 11 March 2019

Still hard to swallow

(A note before I begin this blog: You should not consider anything written in this blog as medical advice for you or anyone you care for).

With over 200 blogs on D4Dementia now, some of them approaching 7 years old in May this year, 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 dysphagia (swallowing problems).

By a huge margin my most popular D4Dementia blog post is ‘Hard to swallow’, which charts the four years that my dad lived with dysphagia alongside his vascular dementia. In that blog I explained dysphagia as follows:
"Something that is sadly very common in advanced dementia is the decline of the swallowing reflex. The condition, known as dysphagia, is extremely distressing for both the person affected and those caring for them, and can be fatal, either directly through choking or indirectly by setting up aspiration pneumonia. 
"The uncontrollable coughing that often accompanies a swallowing problem, indicating that something taken orally has gone into the trachea (windpipe) instead of the oesophagus, can leave the person affected gasping for breath, red-faced and sweating. For anyone who has witnessed someone choking, it is a terrifying moment."
I wrote Hard to swallow in September 2012, less than 5 months after my dad had died from an aspiration pneumonia, so to say this is a topic close to my heart is an understatement. But it must also be remembered that with previous good support my dad lived reasonably well with dysphagia (and no teeth!), still enjoyed food and drinks and maintained mostly adequate levels of nutrition and hydration, so there is hope and positivity too. See my interview with Nourish by Jane Clarke for more insights into my dad's dysphagia.

In the years since dad died I have met numerous people who are living with dementia and dysphagia, and yet despite this swallowing problems are frequently the elephant in the room when thinking about the progression of dementia. Families often write to me, having read my Hard to swallow blog, saying that they simply had no idea that as their loved one’s dementia progressed they would develop swallowing problems.

As a result they feel unprepared, unsure of how to care for their loved one and, frankly, so frightened they worry about supporting their loved one to take anything orally, be that food, drinks or medication. Why we don’t talk about dysphagia more is a mystery to me - understanding how to support a person helps hugely in dispelling myths and calming fears. Dysphagia doesn’t have to be a watchword for unpalatable meals that look like vomit mush, or an undignified experience at every mealtime. As I said in my Hard to swallow blog: 
"Despite my father’s advanced dementia, the Speech and Language therapist was successful in assessing him when his swallowing problems were first identified… and gave us excellent advice that helped to give dad quality of life and give us confidence in caring for him."
That professional support is key, but as is so often the way as services are cut and becoming overstretched it can be support that is very hard to come by. Indeed, in some countries (I’ve had emails from around the world from families whose loved ones are living with dementia and dysphagia) such support doesn’t exist at all as someone who wrote to me from South America in 2016 explained:
"Unfortunately we don't have speech therapists who can guide me on how to handle my dad’s dysphagia. I import liquid thickeners to adjust the consistency of his drinks."
As if supporting a person with dysphagia isn’t daunting enough, to be in this position is intolerable. With such a lack of face-to-face professional support for many families, I hope that the tips and advice online - including those in my Hard to swallow blog - are helpful.

In the years since my dad died, my training and mentoring with care providers has enabled me to understand additional methods for supporting a person with dementia and dysphagia that go beyond those documented in my 2012 blog, and I wanted to share some of those here:

   Straws can cause problems - Liquid drawn through a straw can often hit a person’s mouth faster than that taken without a straw, making straws potentially dangerous for some people with dysphagia. 
   Be especially patient in helping the person to drink - Thickened drinks take many people with dysphagia longer than you might imagine to consume, and most thickeners also make drinks more filling. Therefore little and often is a really important motto for helping to keep a person with dysphagia hydrated.
   Equally, for many people with dysphagia meals are often best provided little and often - The effort required to process food in the mouth and swallow it for a person with dysphagia is immense, far greater than for a person without dysphagia. So the idea of three set meals a day and those meals filling the person up isn’t a sensible approach. Try smaller portions, that the person can eat at their own pace in shorter periods of time, and follow up with further small portions throughout the day at times when the person is alert and correctly positioned upright to eat and drink.
   Try using teaspoons to support a person to eat - This will naturally make each mouthful a smaller amount than larger cutlery will provide.
   If the person you are supporting doesn’t like the taste of thickeners (and despite what the manufacturers say, thickeners do change the taste of foods and drinks), natural alternatives I’ve seen that are popular (though never tried with my dad) include smooth-mashed avocado, smooth peanut butter (providing the person isn’t allergic to nuts), thick Greek yogurt or kefir (if the person can tolerate dairy products), smooth-mashed banana and smooth-mashed or pulverised cannellini beans. Obviously the choice you make depends on whether you are trying to thicken a savoury or sweet food or beverage, and if that food or drink is being served hot or cold.
   Some people have said to me that making foods or drinks sour, for example by adding lemon juice, helps to trigger the swallowing reflex.
   Don’t eat too close to bedtime - Ideally allow 2+ hours after eating before going to bed.

For more information on nutrition and hydration, see my blogs ‘Hydrated and Happy’‘Food for thought’ and ‘The digestive balance’.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886
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