Monday 27 April 2015

Taking stock

Last weekend marked the 3rd anniversary of my dad’s death. Alongside remembering that immensely sad day, it also prompted a lot of reflection, both personally about dad’s life and the gap he has left behind, but also more generally about how much has, or hasn’t, changed in those three years for people who are living with dementia, their families and the professionals charged with providing care and support.

My dad died just a month after David Cameron had launched the first ever ‘Prime Minister’s Challenge on Dementia’. It some ways it seemed very ironic – the country was finally waking up to dementia as dad was going to sleep for the last time. There was nothing in that Challenge that could possibly benefit dad, but I could see that it provided a focus that was badly needed for people who were newly diagnosed or who would go on to develop dementia in the future.

Since then there has been an increase in the diagnosis rate, an improvement in UK-wide awareness resulting in 1 million Dementia Friends, the creation of some ‘dementia friendly communities’, more dementia training for health and care staff, a renewed research effort, and an unprecedented global focus on dementia.

All that sounds very impressive, and undoubtedly it is an improvement on where we were 3 years ago, but I remain frustrated. Maybe I’m impatient, I know Rome wasn’t built in a day, and obviously care and support for people with dementia cannot be transformed overnight, but I remain unconvinced that everything that’s been done, great though it is, has really benefited people with dementia to the extent that the majority could say they are living well, or at least living better.

A major contributing factor to this situation are the cuts in social care, something I recently wrote about for Huffington Post. Most people who develop dementia have far more need for social care services than health services over the course of their dementia. Yes healthcare is important when diagnosing dementia, providing effective management of any long-term conditions that the person might have alongside their dementia (for example diabetes or high blood pressure), treating the common infections that people with dementia often develop as dementia progresses (urinary tract infections and pneumonias), and caring for people if they have a fall that requires hospital admission, but healthcare isn’t the bread and butter of dementia care.

Keeping people safe and well in their own homes for longer is the widely-agreed gold standard for dementia care. It’s what most people with dementia want and, frankly, are entitled to. It will always live in my memory that my dad was taken to hospital having collapsed from a larger stroke and never returned to his home. Not through his choice, or ours, but because he was deemed to have been too much of a risk to himself and others if he returned home. In hindsight, that could easily have been code for, “We don’t have any suitable accommodation that could help to keep him independent, nor can we provide the professional support he needs or support you as his family, therefore it’s just easier to keep him in hospital and then put him in a care home.”

In the 3 years since my dad died, or indeed the 12 years since he was moved into his first care home, I’m not convinced that any policy by any government of any political persuasion has actually ensured that if we lived that experience with my dad again now that the outcome would be any different. Daily life for people with dementia still, pretty much, amounts to muddling along in your own home (if you're 'allowed' to) - with some modifications if you’re fortunate enough to be helped with those, or indeed can afford them yourself – and being means tested for home care which might, in reality, amount to highly inadequate 15 minute visits that neither you as the person with dementia, or the care worker, actually feel achieve anything. The alternative is either hospital (free care) or a care home (means tested).

We know that people with dementia are ending up in our overcrowded A&E departments far too often, mostly because they haven’t been getting the social care that they need, and then proceeding to languish in hospital beds for far longer than they should be (much like my dad did, with one 3-month spell in hospital seeing him lose half his body weight as he was drugged with antipsychotics) all because of endless assessments and wrangles over funding.

We also know that GP’s are under pressure to diagnose increasing numbers of people with dementia, often referring them into memory clinics with long waiting lists. There is precious little support for people who are newly diagnosed, with too few specialist dementia nurses and then, of course, there are families, many of whom want to support their loved ones but are given scant help with this and a paltry carers allowance to live on.

Meanwhile, I’m not convinced the Care Act, that great bastion of apparent overhaul in caring for and supporting people, will provide much tangible assistance. Yes, there are entitlements to assessments, Councils have to help families by providing information, and next year sees the cap on care costs come into force, but for many families this means-tested social care system will still leave them with complex financial issues to overcome.

Add all this up and it amounts to a not particularly impressive stock take. I still don’t think most people with dementia feel listened to, nor do their families. A lot of what’s been achieved, it could be argued, is fancy window dressing – things that look good and are relatively easy to succeed with, whilst side-lining the really big issues about how we provide holistic, person-centred support for each individual living with dementia, preserve their independence for the longest possible time, give carers and families the help they require to continue to care and not breakdown, and properly provide and fund the social care people with dementia need.

I hope that dementia remains a priority for the next government, but even more than that, I hope politicians start to get to grips with the issues that are REALLY challenging for people with dementia and their families.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Monday 13 April 2015

Happy birthday to my dad

Today would have been my dad’s 88th birthday. By sheer coincidence, this blog is also my 150th on D4Dementia. How I have managed to bring these two milestones together I have absolutely no idea, but it makes this blog post extra special.

For me, today is more about celebration than sadness. That’s not to say that I’m not incredibly sad that I can’t spend the day with my dad, of course I am, although to be fair I think that every day not just on memorable dates. Every April since I began this blog, I’ve written a post about the milestones April brings for us as a family (2013: ‘Reflections on a life lived and a man loved’ and 2014: ‘A loss of innocence’), but this year I want to focus more on how we celebrated today when my dad was alive – happy memories that I will always cherish and that I hope might inspire other families. 
Dad's birthday in 2010
As regular readers will know, my dad spent 9 years in 3 different care homes. That’s 9 birthdays that you might be forgiven for thinking were difficult to even contemplate celebrating, given that dad was living in a communal environment and over the years became very immobile and poorly, severely restricting what a celebration could actually involve.

Yet quite the opposite is true. We made the best of the situation we found ourselves in for three reasons:  

·       Firstly and most importantly for dad. He didn’t ask to have dementia, nor, given the choice (we weren’t) to live in care homes. He was never the biggest fan of his birthday but, that said, in my early childhood dad always had a cake, special meal, favourite drink, cards and presents, and frankly, there was absolutely no reason not to carry on with those celebrations as best we could.

·       Secondly, to make the most of family time together. Despite dad living in a communal environment and sharing his birthday celebrations with everyone living there, it was also a landmark date for us getting together as a family and in amongst all the other faces and events happening around us we still had quality time together as a family.

·       Thirdly, to create the happy memories and photos that we have today. This reason seemed less important at the time, we were simply living in the moment, but now that dad has gone it takes on a very different meaning.
The nature of dad’s birthday celebrations changed over those 9 years. To begin with we would take dad out, go to the pub and have a favourite meal and a pint, most notably for dad’s 80th birthday. I have a fabulous picture that I occasionally show during presentations at conferences of my dad enjoying his pint on his 80th birthday – a photo that for me really sums up living well with dementia.

Subsequent birthdays were spent at the care home. Dad had a swallowing problem for the last 4 years of his life which made eating out quite difficult. Food choices were very restricted for him on conventional menus, and given that his routine was to have his main meal in the middle of the day, options such as soup really weren’t going to be enough for a man who, gloriously, still had a very impressive appetite.

Just because dad couldn’t go out for a meal, however, didn’t mean that we couldn’t all eat together. We would talk to the chef at the care home prior to dad’s birthday and as a family we would each choose something to eat with dad. A family table would be set in the dining room and we’d enjoy a two course meal with dad. Sadly we never had much success thickening beer, and dad didn’t like the taste of wine in the last few years of his life, so the toast became fruit smoothies.

Generally before lunch we would open presents and cards, not least because dad would often be too sleepy to enjoy them in the afternoon. A standard present was always a new CD, and that would usually be played in the afternoon. As dad liked lots of classical music, it was very easy for us all to get into the spirit of an afternoon nap! I would often be propping my eyes open sewing name tapes into dad’s new clothes (another standard birthday present), before cake arrived.
Dad's 2011 birthday cake
Like many care homes, the homes my dad lived in always gave residents a freshly baked cake for their birthday, complete with candles to blow out. I would also make a cake, and we would share tea and cake with dad mid-afternoon, and then by 4.30-5pm the evening tea would arrive – usually soup, sandwiches and a dessert.
Suffice to say, then, that dad’s birthdays were pretty much crammed full of food, along with lots of photos, singing, laughter, smiles and jokes. I would always ask dad if he liked his presents, and it was always his prerogative to say he didn’t – a little joke between us that always made me smile.
Birthdays, with the exception of dad’s last birthday, were always happy events, so much so that as I write this I have a smile on my face. Sadly, for dad’s last birthday, he was very poorly and would pass away less than two weeks later. Those photos aren’t happy ones, and those memories have a very strange mix of emotions attached to them. Gratitude and relief that dad’s last birthday wasn’t spent in hospital, huge thanks to the wonderful staff at the care home dad had just moved into for their help in getting him out of hospital and the huge effort they made on the day with decorations and a beautifully decorated cake (that unfortunately dad was too poorly to eat), but also recollections that no matter how much we tried to lighten the mood, we knew that dad wouldn’t be with us much longer.
Although those memories may be the last ones I have of my dad’s birthdays, the happy times we had in earlier years outweigh the sadness, and I hope that they give other families some inspiration to continue to celebrate and enjoy special occasions with their loved ones. Living with dementia, and indeed living in a care home, doesn’t have to end all hope of putting the ‘Happy’ into ‘Happy Birthday’.
Until next time...
Beth x

You can follow me on Twitter: @bethyb1886