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.

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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 café – ‘We are family’. 

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

You can follow me on Twitter: @bethyb1886
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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 92^nd 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...

You can follow me on Twitter: @bethyb1886
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Bringing the generations together

There have been few documentaries I’ve enjoyed as much as Channel 4’s ‘Old People’s Home for 4 Year Olds’. For me it ticked every box - it featured some amazing older people (the oldest was 102) and pre-school children (the youngest was 3), it looked at ageing, social care, healthcare, education and child development, it demonstrated innovation combined with scientific rigour, and best of all, it featured some really positive outcomes for the older people and the children involved.

It’s no surprised I loved the programme given the 9 years my dad spent in care homes, the work I do now with older people and those who provide care and support for them, and as a mum to a preschooler, my current immersion in the world of early years education. 

The seed for my enthusiasm for intergenerational work was sown watching my dad light up whenever children visited other residents in his care home. Sadly though, the time many of these children spent in the home was brief and their visits sporadic, so my dad never really had the chance to fully benefit from their presence, unlike the 10 older people featured in Old People’s Home for 4 Year Olds.

In our household, this documentary was particularly timely - in the weeks it aired we were settling our daughter into pre-school. It hasn’t been the easiest transition for her, but I am absolutely certain given her relationship with my mum (who is 79), that had she had the option to go into an early-years educational establishment that meant she shared her pre-school time with older people she would have settled a lot quicker.

The synergies for me don’t end there either. In an attempt to help our daughter settle into pre-school life I made her a memory book, which I’m gradually filling up with photos of all the adventures that we’ve had this year. A memory book for an (almost) 3-year-old - They are for older people (and people living with dementia) right? Wrong! They are amazing at every age and stage of life, and the book has been phenomenal for our daughter. It's given her pages of lovely familiar photos to comfort her and prompt her to talk about her adventures, and it's enabled her teachers to get to know her so much quicker and easier.

In essence, we are actually informally running our own mini intergenerational experiment in our house. My mum lives with us, and although I don't have scientists or experts measuring the effects of this for our daughter and my mum, I can informally categorically say that our daughter’s communication, reading, interactions and skills-set have benefitted so much from extensive time with her Granny, and for my mum, our daughter has physically and mentally challenged her, kept her going and brought so much joy, excitement and unpredictability into her life.

If my mum was living alone she would have had none of this, and would have been much more isolated and potentially lonely, as many of her peers sadly are. Meanwhile for our daughter, with the best will in the world, she would never have had as many books read to her or enjoyed so many other little learning experiences without Granny around every day. 

So, what do we learn from Old People’s Home for 4 Year Olds and my own domestic life? For me it’s that keeping generations in silos is so outdated. I’m not saying that arrangements like those shown on Old People’s Home for 4 Year Olds would work for every older person or indeed every preschooler. Some older people wouldn't want that level of noise, interaction and energy around them. Equally, some preschoolers may prefer to only be with their peers or adults of their parent’s age.

But there needs to be much more choice for everyone who would benefit. Older people who would like to interact with preschoolers could find a new purpose in life, teaching and supporting children to learn, and keeping themselves physically and mentally active into the bargain. Meanwhile preschoolers, who may have busy working parents and live long distances from their own grandparents, could benefit from the patience and time less hurried older people may be able to provide. And that, of course, is to say nothing of the exchange of wisdom that would be happening. 

For those with a less practical, romantic vision who are only interested in hard facts, muse on this. Old People’s Home for 4 Year Olds showed significant physical and mental improvements in the older people over the 3-months of this experiment, all of which could potentially cut the costs associated with their health and care needs. Examples included:

• 102-year-old Sylvia going from being classed as frail at the beginning of the experiment to being no longer classed as frail at the end of the 3-months. Sylvia's cognitive health tests also improved by +3 points.
• 97-year-old Victor improved his depression score by +3.
• 81-year-old Lavinia went from taking 495 steps per day to 1750 later in the experiment, and this despite a fall during the 3-months.

And overall amongst the older participants:

• 5/10 improved their balance.
• 9/10 improved their grip strength (an indicator of overall health).
• Almost half of the volunteers reduced their risk of falling.

The children also showed improvements, including the youngest child, Zach, improving his personal and social interactions and use of language, and Mason improving his sense of what it means to be an older person and developing his ability to nurture and be empathetic. Indeed, such is the impact of this experiment that The ExtraCare Charitable Trust, who run Lark Hill Retirement Village where Old People’s Home for 4 Year Olds was filmed, have committed to a lasting legacy for the project that will see a rolling six week intergenerational activity programme for Lark Hill residents and children from its neighbouring nurseries.

I can see so many positives in intergenerational approaches, and in the 6+ years I’ve done the work I do now I don’t think anything has excited me as much as the potential for bringing the older and younger generations together. The possibilities seem almost endless to my eager brain which is desperate to see new initiatives for the youngest and oldest in our society.

I feel we have become very stale, very staid, in our approaches to supporting people at the polar opposites of the age spectrum and it saddens me. For older people, they don’t necessarily have years to wait to get the care and support that they need, to alleviate their loneliness, to give them purpose and a reason to live the best life that they can. And for our youngest citizens, their brains are alive with possibility and opportunity, just waiting for us to ignite their imagination and feed them with the facts about anything and everything that makes up the world we live in.

For me there is no time to waste. No ifs, no buts. I’m proud that in our own little way through our domestic life that we are doing this as a family, but I would love to hear from any individuals or organisations who want to do intergenerational work like that shown on Old People’s Home for 4 Year Olds at scale. For our older and younger citizens, let’s make this happen!

Until next time...

You can follow me on Twitter: @bethyb1886
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Finding the value in every generation

Prior to becoming a mum, I wrote extensively about my experiences of caring for my dad. In many ways those experiences were a unique preparation for parenthood. Not in a disrespectful way - I never viewed my dad as a baby – but in the context of another human being depending on you and how that is a responsibility unlike any other.

During my years caring for my dad I discovered the harsh reality of the way the parent/child relationship changes as dementia progresses. I became more like a parent to him, in terms of being asked to give permission for him to do things like going on day trips or having medical treatment, and he also needed me, or another family member or care worker, to help him to eat, drink, dress and wash.

From all of the experiences I had with my dad, some resonate more now that I am a mum, and in particular the occasions we would take dad out, for example to coffee shops, and how people reacted to him and to us. I spoke candidly about this in my film for the 2013 G8 Dementia Summit where I said:

"We would take him to coffee shops, and for the last four years of his life dad had a swallowing problem, which meant that we would need to spoon drinks into his mouth. And you will get looks from people, because they're not used to seeing something like that, but that wasn't going to stop me from taking dad out. He enjoyed it and the interaction was good for him."

Now, instead of pushing a wheelchair into coffee shops I push a pram, and the reaction from fellow customers is very different. People come up to us to say how beautiful our daughter is, ask how old she is, comment on her smile and coo over her. All of which is absolutely lovely, but it does make me think. What I would have given for just one person to come up to us when I was out with my dad and greet him (yes, my dad, not me – a person with dementia should be directly addressed, not through a carer or family member), say something nice or even just smile at us.

Instead the looks were often cutting, pitying or even disgusted. The words were conspicuous by their absence, although you could sense the muttering disapproval in hushed tones around us. I'm not bitter, far from it. We had many happy times out together as a family and didn't need anyone else's contribution to those occasions to improve them, but a little kindness from strangers would have still been very welcome.

But I'm not naïve. Long before I was a mum, I wrote about the appeal younger people have that older people largely don't. I appreciate that babies are a magnet for fascination and comment and I wouldn't want to change that. I would just love to see a change in attitudes that reflects the value in every generation of human being.

As a society we have become more 'dementia friendly' in the years since my dad's passing in 2012, and sitting in a local café recently with my mum and baby daughter, I was delighted to spot a 'dementia friendly' sign. I made a point of speaking to the café owner about it and what it meant to him, his staff and his business.

He spoke about how being welcoming and understanding towards people who have dementia has made his café a magnet for families who have a loved one living with dementia. People who are living with dementia, their partners and families come and spend their money in his café because it's a place that makes them feel comfortable, where staff give them time, and are flexible and responsive to any additional needs within an environment that is easy to navigate and homely.

Having somewhere like that to go with my dad would have been wonderful, and anything that encourages more businesses to create an offering to customers that is inclusive towards people who are living with dementia is to be applauded. All the better too if fellow customers also adopt the mind-set of the people owning and working in cafes like this, and play their part with kindness and compassion.

I fully appreciate that to change attitudes to an extent that older people, and people living with dementia, are as welcome as cute, chubby-cheeked babies is probably unlikely, but if every parent teaches their child to value, respect and be kind to people of more advancing years and those who are living with dementia, then perhaps in the future we will be able to say that the UK really is a good place to grow older and to be supported, whatever life throws at you.

Until next time...

You can follow me on Twitter: @bethyb1886

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Dementia takes... and dementia gives

The start of a new year is a time that many people find themselves in a reflective mood, and I have more cause than most to feel that way as 2016 kicks off.

As some readers may know if they follow me on social media, I became a first-time mum last November.

A very proud mummy to a very beautiful daughter, Sophie Rae, born 21 November #totallyinlove pic.twitter.com/gUdhBHlWww

— Beth Britton (@bethyb1886) December 4, 2015

Parenthood opens up a whole new world, and inevitably makes you think about family life in a totally different way. Amongst the flurry of people eager to meet the new addition, you inevitably think about those who will never meet your child, and for me the person at the forefront of my mind is of course my dad. 

In the film I made for the G8 Dementia Summit I said of dad’s dementia: 

"It’s robbed him of opportunities that, obviously, now he will never have"

When I said this I was particularly thinking about potential future grandchildren. My dad loved children, and would have adored being a grandparent. The look on his face had he had a newborn grandchild placed in his arms is one I can picture vividly in my imagination, and I feel a huge sense of loss that I cannot experience that in real life.

Dementia has robbed us of that opportunity, that moment that would have become etched into our family history and captured by camera to preserve forever. The reassurance that comes from feeling dad's constant presence is a consolation, but it doesn't replace the real thing and never will. For that I hate dementia and I hate the fact that by developing it, dad's life was limited and, in my view, ended before its natural conclusion.

In the midst of those feelings it's hard to see positives, but they are there. Dad's legacy is one our daughter can learn from and be proud of. Dad's life with dementia left a story for me to tell that has much to inspire an enquiring mind as it grows and develops, and nothing will make me prouder than having our daughter in an audience one day when I'm speaking at a big event. I hope that even if she doesn't want to follow in her mum's footsteps in her working life that she will see the good, the kindness and the love that goes into what I do every day.

None of those things will replace learning from my dad's wisdom or having his cuddles, but she will come to know and appreciate everything that made him such a special man. In that way, dementia gives a little - it gives her lessons to learn, kindness to emulate, and a foundation to lead her life embodying the qualities my dad so admired and strove to teach me every day - humility and respect.

Since I would give anything to be able to introduce our daughter to her maternal grandfather, it makes me very sad to think of the many children that could be part of the lives of their older relatives and aren't. Without any reservations whatsoever I would have ensured our daughter was part of my dad's life during his years with dementia, including taking her to visit him during the nine years he spent in care homes.

I am certain that the interaction between the two of them would have been magical. Children don't judge people with dementia in the way that adults often do. Babies in particular have an innocence and a vulnerability that could never threaten, intimidate, or make a person with dementia feel inadequate or less of a human being. There is so much that we as adults could learn from the unconditional love and trust a tiny baby gives us, and use those lessons to impart the aforementioned qualities into our interactions with others, particularly people who are living with dementia.

My memories of my dad, and the many things I learnt from him both before and during his life with dementia, will undoubtedly influence the kind of parent I am and will grow into being in the years ahead. I can't help feeling that those lessons belong in some way, shape or form in parenting classes - proof, if it were ever needed, that intergenerational learning and intergenerational work in dementia awareness has never been more relevant, or more needed.

Until next time...

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