Five things I wish I'd known before my dad's dementia

I've lost count of the number of times people have asked me for tips and advice when dementia has come into their life. With more people than ever before now living with dementia, or knowing someone with dementia, it seems apt for my Dementia Awareness Week blog of 2017 to share my top five things that, with the power of hindsight, I wish I'd known before my dad developed dementia.

1)      How much life changes

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. Clearly dementia utterly altered the course of my dad's life - last month he should have been celebrating his 90th birthday. Instead, the last 19 years of his life were characterised by slow cognitive decline and eventually a very marked physical decline too.

In a very different way, my life has completely changed as result of my dad's dementia, and it will remain so for the rest of my life. Those experiences don't leave you, even if you don't go on to work with people who have dementia as I have. For me there are two ways of approaching this change - either embrace it, appreciating what you've learnt/are learning and making the most of that knowledge by sharing it for the benefit of others, or at very least, allowing yourself to be at peace with it. Or you can rail against it, trying very hard to block it out, pretending it isn't or hasn't happened. I'm yet to meet anyone who has successfully achieved the latter, but that isn't to say it can't be done. As in all things, it is a matter for the individual, but to at least have a genuine awareness of the way dementia changes lives is, for anyone affected by it, the beginning of finding the path that is right for you.

2) What to do for the best

The great problem when my dad was living with dementia is that I wasn't a researcher, or an observer of all things 'dementia'. I never Googled what other people's dad's who were living with dementia really enjoyed. Nor did I attend dementia groups, access social media extensively, or read dementia books or blogs (so the fact that you are reading this means you are one step ahead of where I was!).

I learnt what worked for my dad eventually but it was often through trial and error, and when I think back so much time was wasted. For example, I would never have persevered with ensuring my dad had TV in his room: in hindsight I would have scrapped the TV on day one and replaced it with the CD player and music collection that brought infinitely more joy to his life. I’d have made the environmental changes that personalised dad’s room much quicker, and the life story work staff asked for my help with and I took ages to dig out photos and make the memory box, I’d have done that quicker too.

We'd buy things, like CD's, for birthdays and Christmases thinking it was nice to space out the gifts. Big mistake. Dementia is terminal, you are 'on the clock' as it were. Get as many lovely things as you can afford and enjoy every single one of them as soon as possible so you have them for as long as possible. My dad was never into big birthday or Christmas celebrations, and looking back maybe he was onto something with that.

3) What my dad would have REALLY wanted

This is tricky, because no one likes to think about a loved one developing dementia and eventually becoming physically frail and needing a care home or hospital care, or deciding about resuscitation and end of life preferences. The problem with never having these conversations, however, is that you are completely in the dark when decisions have to be made, and where dementia is concerned, decisions do eventually have to be made.

The most I ever knew about my dad's wishes? Dad would walk past a particular churchyard and say he wanted to be buried there. And he would very occasionally say that if he was very ill to 'take him out the back and shoot him'.

Basically, we didn't have a lot to base our decisions on. Yes, a deep love for and understanding of my dad, and a strong sense of doing right by him and adhering to what little we knew of his preferences (of course the law doesn't allow for what dad actually wanted!), but beyond that technically it was guesswork.

So if you have a chance to talk about Power of Attorney (in England this is in two parts, Health and Welfare) or make advance care plans, do it. It's difficult at the time, but even more difficult down the line.

4) How much memories matter

There is a massive focus on lost memories for a person who is living with dementia (despite the fact that dementia isn't just about memory problems), but less focus on how those of us around the person allow memories to slip away too. All those minutes, hours, days, weeks, months and years I spent with my dad during his dementia, and yet I have a comparatively tiny collection of photos, and no videos or written diaries.

Granted, I wasn't part of the smartphone generation back then, but when I think about the amount of moments I capture as a mummy to our daughter, I hugely regret not capturing more of my dad's special moments. And they were special, so very special, even when dad's dementia was very advanced. There are no second chances to record those moments, and even if you never look back at them, at least you have them. I don't have that option now, and while the memories in my head are strong and the photos I have very precious, I could have had so many more mementoes of our time together.

5) The lowdown on care homes

When you are suddenly confronted by a doctor telling you that your father won't be discharged home from hospital but instead must move to a care home, it's a shock. It's even more of a shock when you're asked to find a care home and have no idea what you are looking for.

We first encountered that challenge 14 years ago. These days there are loads of websites offering you advice, and I weighed into that debate a few years ago with this blog. Ultimately, my very top tip would be: Don't choose a care home that looks the best, choose one that feels the best. Gut instinct is crucial. And even if you never ever plan to go into a care home yourself, or for any loved one of yours to go into a care home, it doesn't hurt to be informed. You never know when life can throw you a curve ball, and dementia is a very curvy ball.

So, there is my 'Top Five'. Please share them, add your own dementia-themed 'Top Five' in the comments, and together we can help to make this year's Dementia Awareness Week more informative for all.

Until next time...

You can follow me on Twitter: @bethyb1886

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The corners of your mind

I’m a bit of a fan of all things vintage, as you might have gathered given my love of our older generations. Music is no exception to this rule, hence the title of this blog post coming from a much loved song, ‘The way we were’.

 

 

I’ve always felt that the lyrics to this song are a rather poignant reminder of how life changes through the years. It also has important meanings in relation to our memories, the invisible library that lives within our brain and chronicles our lives. Should dementia ever set in, that library becomes muddled, and eventually toms of knowledge are like books that have been borrowed from the library and never returned. The person with dementia then becomes a bit like a frantic librarian, trying desperately to remember where they have stored the particular segment of knowledge that is required.

I wrote in 'Loving our elders and betters' about how, when an older person dies, "It is as if a library has burnt down." Many people would argue that dementia is like a slow burn, very gradually turning memories to cinders, often initially with little physical evidence of the ‘fire’ taking place. Given the choice I think some people facing such a future would rather experience a giant inferno that engulfs their lives with such rapidity that they have no idea that it has even happened, but dementia is rarely like that.

It teases the mind, allowing us to retain selected memories, often those going back many years, but not always the most useful ones. Those crucial practical memories of how to undertake and successfully complete tasks may go very early, as can memories of what we did or said a minute, hour, day or week ago. The precious memories of key life events, and key individuals in our lives, may also end up being filed under absent.

Being deprived of that last set of memories is particularly painful because they characterise our lives and us as individuals. They act as a safety blanket, giving us a place to meander into during those quiet moments of reflection, or provide thoughts of positivity and strength when we are feeling vulnerable or worried. We want to be able to remember people, places and things that are important to us, knowledge we have studied hard to acquire or experiences we want to be able to pass on, but dementia has other ideas.

Memory problems are something we generally – and wrongly - associate with ageing, as I wrote about here. Moreover, I think that throughout our lives many of us are guilty of taking our own memory for granted, and in our interactions with others we readily expect their mind to perform with seamless speed and accuracy. We don’t have time or patience for a hunt around someone else's personal library – we want our information instantly, and not being able to deliver that often leads to the belief that someone is unintelligent, useless, worthless or stupid.

However dementia, and the way in which it can affect our memories, can hit anyone and not just in old age. Having a previously brilliant brain is no guarantee that you won’t get dementia. I’ve met leading doctors, academics and businessmen who are living with dementia – all had hugely admired brains that have now been ravaged. My dad, whilst never a man of high academic standing, had a truly impressive mind – his knowledge of the countryside, farming and animals was second to none. His wisdom was a gift that as a child I never really appreciated. Now it’s gone, I miss it more than words can say.

The corners of our minds harbour things that we may think we will never need, but each memory has its place and importance and being without any of them will adversely affect our lives at some point. We talk a lot about memory ‘loss’ in dementia like it is something that can be found again. Sadly even for people who achieve respite or improvement from their symptoms through therapeutic interventions, they are still living with a terminal disease that is characterised by eventual decline.

What I admire most, however, is the way in which many people with dementia try to guard against this, always working to prevent dementia steeling more books from their memory library. I think as outsiders looking in, we often don’t realise just how hard people with dementia try in order to maintain normality and keep all of those important memories alive. For many, notebooks and post-it notes become their allies – the feeling being that what cannot be remembered must be written down.

Increasingly I think technology (smartphones, tablets and other handheld devices) will have a role to play, particularly for people who are diagnosed with younger onset dementia and are already used to leading very technological lives. However, I think nothing will ever really beat our loved ones for helping to keep memories alive and effectively providing a 'Back Up Brain'* for us all, regardless of whether we develop dementia or not.

Dementia has the power to literally re-write and remove our memories, twisting, confusing and manipulating those precious nuggets of understanding and experience that we build up over our lives. As the song tells us, "Memories may be beautiful and yet, what’s too painful to remember, we simply choose to forget." Having that choice is a wonderful thing that we should never take for granted. 

Until next time...

You can follow me on Twitter: @bethyb1886

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*Back Up Brain – BUB –  is a phrase borrowed from my inspirational friend Kate Swaffer, an Australian lady living with young-onset dementia for whom her husband is her primary BUB. I would recommend checking out Kate’s blog http://kateswaffer.com/daily-blog/.

Reflections on 2013

Reflecting on a whole year is never an easy task. So many different events, milestones, and most importantly people have contributed to the last 12 months, each leaving me with that most precious gift – a memory.

My collection of memories for 2013 is fairly eclectic – I’ve spoken at conferences, run workshops, taken part in debates and appeared on radio and TV. I’ve become a Dementia Friends Champion and a member of the Dementia Action Alliance, as well as fundraising for Dementia UK and Alzheimer’s Society. I’ve become an Ambassador for BRACE, won ‘Best Independent Voice on Older People’s Issues’ at the Older People in the Media Awards, and made a film that was shown at the first ever G8 Dementia Summit.

Attending the Summit, and having tea with the Prime Minister afterwards, is arguably the most high-profile memory of 2013, but could it also be the one that has the most impact in the years ahead? I was asked after the Summit whether I thought the G8 would stick to their commitment to, “Find a cure or disease-altering therapy by 2025.” My answer is that it is up to all of us who are passionate about dementia to ensure that they do.

But for this, my last D4Dementia blog post of 2013, I want to share some memories with you that aren’t going to make huge headlines but will live in my heart and mind for a long time. So, in no particular order:

Meeting Kate Swaffer: Arguably the greatest privilege of the year, and certainly one that I’ve spoken about extensively since, was meeting Kate, an online friend who became a real life friend over a #dementiachallengers lunch in London. Kate’s grace, poise, humour, kindness and wisdom is inspirational - she also happens to be living with dementia. Kate, along with the lovely people who featured in the G8 films (Hilary, Trevor and Peter), are shining a vital light into what living with dementia REALLY means.

Moral of the story: Think myths and stigma about dementia and then think again.

Our Memory Café:  It’s been a tough year for dementia services in my area. Our Singing for the Brain (SFTB) closed down, and our Memory Café is mostly being propped up by people attending from the local care home. Alongside the sadness of hearing about the deterioration of some of our friends from SFTB, came the joy of seeing ladies from the local care home singing along to some of their favourite tunes at our impromptu music group at the Café. As one of the ladies said, “I thought I was only going to get a cup of tea. I didn’t know we would have singing too. Thank you so much.”

Moral of the story: Sometimes the small things in life bring the most pleasure (and don’t require huge sums of money to deliver).

My dad’s last care home: I’m somewhat ashamed to admit that since we cleared out my dad’s room following his death in April 2012, we hadn’t been back to the care home that looked after him in the last two weeks of his life. That isn’t because we didn’t want to, but despite the loveliness of the home I still picture answering the door to the undertakers and seeing dad being wheeled out of the home on their trolley. However, when I was asked if I could show a colleague from NHSIQ around a good care home, there was nowhere else I could have taken her. It was emotional to be back there again, but the huge smiles, hugs and warm welcome from the amazing people working at the care home reminded me yet again what a special place it is.

Moral of the story: For all the negative reports you hear about social care, there are far more good places and people that are never spoken about.

Finally…

People: I’ve met such a huge array of people this year – politicians, health and social care professionals, managers, civil servants, business owners, academics, families from all walks of life, and many inspirational people who are living with dementia. From the youngest to the oldest, from those who are extremely knowledgeable about dementia to those who feel completely baffled and are desperately seeking help, it’s fair to say that each and every person has managed to inform and educate me in some way.

Moral of the story:  We all have something to offer, and to dismiss others is to do ourselves a great disservice.

So, it is with my precious collection of memories from 2013 that I close this blog post by wishing you all a very happy Christmas and a peaceful, healthy and fulfilling 2014. My next D4Dementia blog will be in January, and I’ve taken the difficult decision that D4Dementia will become fortnightly from next year, so suffice to say it will take me somewhat longer to reach my next century of blog posts. What won't change, however, is my passion for raising awareness of dementia, tackling 'difficult' topics, and providing positive and practical advice.

Thank you all for your amazing support over the last 12 months.

Until 2014...

You can follow me on Twitter: @bethyb1886

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