Do We Care?

It’s a simple, four letter word. It should be the most positive four-letter word there is. So why is care such a vexatious issue in this country? Are we really as uncaring as it sometimes seems?

We are waiting for the government to publish a Green Paper on social care for older people. Remember, a Green Paper is a preliminary indication of government policy, designed to provoke discussion. In other words, the publication of a Green Paper doesn’t guarantee change. It’s the start of a process of discussion and debate which might lead to something valuable at some point. In other words, don’t hold your breath. The proposals in the Green Paper will be published – like a Northern train, “the summer of 2018” is the vague arrival time – as a robust debate continues about how much money we need to fund health care.

Of course, care, social and health, costs money and of course, someone has to pay the bill. When Mum died in May 2017, I reckon she and we, as a family, had funded her care, via various means, to the tune of around £200,000. We were lucky to be in a position to do that, to make sure that Mum received the best care we could find. But she needed care because she was ill. Alzheimer’s Disease is just that, it’s a disease, a medical condition. In the early days of her dementia, Mum had an unrelated condition which caused her to fit. I took her to hospital on one occasion and she was admitted. Had we not been able to look after her, she might have stayed there for much longer than one night. And if she had done so, her care would have been funded by the NHS. So what is so different when a family makes sacrifices to care for a loved one? Why should that family have to pay potentially ruinous costs?

So many people with dementia are cared for at home. In 2014, Alzheimer’s Society reported that two-thirds of the cost of dementia care – put at a conservative £17.4 billion – is paid by people living with dementia and their families, either in unpaid care or in private social care. It was estimated that family members or close friends provide unpaid care which would cost more £11.6 billion pounds. That is a staggering amount of money, a proportion of which could, should, be funded centrally.

Anticipating the Green Paper, the Secretary of State for Health and (now) Social Care, the Rt.Hon. Jeremy Hunt says:

“We are committed to reforming social care to ensure we can guarantee everyone dignity and security in old age.”

We all have to pay, in some way, for that dignity and security. I’m not naive – I understand that good care comes at a cost. But please, let’s not make the discussion – whether prompted by the Green Paper or not – be restricted to money. If as a country, we can’t talk about care in terms of its quality, in terms of the way it permits a person, regardless of their health, to live as fulfilling a life as possible, then we are doing something fundamentally wrong.

If we don’t aspire to the best care for everyone, then we really don’t care at all.

 

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Little Things Mean a Lot

My love affair with music, all kinds of music, began at a very early age. When we went out shopping, Mum would leave me in the area of the store which sold what were once referred to as record players and records. I would happily stay there for as long as it took Mum to find what she was looking for elsewhere. I’m not sure that would be allowed today. I’d probably be taken into care.

As a young child, music was everywhere. I inherited a collection of 78 records from Mum and from my grandparents. These included Perry Como’s Magic Moments, which has featured before on these pages, and a recording by Kitty Kallen which has been playing on to my internal jukebox this week, Little Things Mean a Lot.
Little Things

I wouldn’t call it a  classic though it was popular enough to top the US charts in 1954. I remember the words making an impression on me in those far-off black and white days. For a child of four or five, “little things mean a lot” made sense, in a way that more sophisticated song lyrics like Chirpy Chirpy Cheep Cheep didn’t.  I think the song has been in my head again this week because I was reminded of the importance of littel things at the Alzheimer’s Society Conference. Let me explain.

The theme of the conference was action. It’s Dementia Action Week, a week set aside to shine a light on the disease. The week used to be known as Dementia Awareness Week, but now the focus is on action. Awareness isn’t enough. We must do things to change the world for people affected by dementia. These things can be little – hence, perhaps, why the song is playing.

The conference reminded me what a powerful force music can be for those with dementia. My highlight was a performance by a charity called Music in Mind of a piece of work entitled Hidden Voice – Giving a Voice to People Living with Dementia. I won’t try to describe the impact it had on me except to say that, strangely, I felt reunited with Mum for a short while. Go to their website if you have a few moments. Those moments won’t be wasted: https://www.musicinmind.org.uk/projects/

Music crosses boundaries between people living with dementia and those closest to them in a way that, sometimes, words cannot. It happened for Mum and I, increasingly as she became less able to communicate in other ways. Music would always bring a smile to her lips and a gleam in her eyes.

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For a few moments, as we sang along with Perry, all was well.

Music won’t cure dementia but it can, and will for some, make life a little better. And little things mean a lot.

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Remembering

Mum xx

12 months ago this morning came the ‘phone call. Mum’s dementia story was over. Her doctor told us, as the final decline set in, that it could be months. We knew better. Mum had let go. The end was fairly swift, but there was no pleasure in proving medical opinion wrong.

Strangely, or perhaps not, I miss the pre-dementia Mum now more than I did during the decade in which that pernicious disease pulled her away from us. It’s as if, in the last year, we have been freed to remember Mum as she was. As she appears in the photographs above – her smile which lit up the room.

I still talk about Mum a lot. Recently, I spoke at an event on behalf of the Alzheimer’s Society and Mum smiled down at the audience from the screen. We shared stories of people we’d loved and lost. Every story was different but all had a shared theme.

A dear friend of Mum and Dad sent us a card this week. Pat visited Mum two days before she died and conducted the service in which we celebrated her life a couple of weeks later. She has been a wonderful support and is a part of our lives.

Today is a day to remember the good times. To raise a glass in Mum’s memory (not too much dear, I’ll be tiddly) and to be thankful. Dementia took her but, the memories, the smiles, the love, endure.

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Happy Mothering Sunday

Mum

In my thoughts today, as every day. If you’re lucky enough to have as wonderful a relationship with your Mum as I had, tell her.

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Getting Better

IMG_1302This blog has never been about me. It was about Mum while she was still with us, and it’s about her now that she’s not. Today, though, I have a personal sob story of sorts. It’s now more than 100 days since, in a moment of sleep-induced confusion, I mistook the top of a staircase for a bathroom door and tumbled from top to bottom. I was extremely fortunate to escape with relatively minor injuries – a paramedic informed me that he’d attended a similar case a week earlier and had headed for the morgue rather than A and E – but I’m still some way from a full recovery.

At least, though, I know I know I’ll get better. One day soon I’ll be the old clumsy Duncan again, head-bumps as standard. Getting better – it’s not something to take for granted.

Many people never get better or know they’ll never recover. Mum never got better. From the day her diagnosis was confirmed, a month more than nine years ago, she knew what she was facing. It is a blessing that her comprehension of what was happening to her seemed to fade away in the months that followed. Hundreds will receive a similar diagnosis to Mum’s this week and they and those closest to them will begin to live with the consequences.

My enforced convalescence is offering plenty of time for reflection and I have been musing on how Mum must have felt when she received the news on that February afternoon in 2009. I remember how I felt. I recall a conversation with my sister. I remember taking Mum to see her consultant, being told to ask him anything we liked, and not having a clue what to ask. It was like landing overseas with no understanding on the language being spoken. We didn’t know what to say, or how to say it, because we hadn’t visited this frightening place before.

One of the many inspiring people I’ve met since D-for-Diagnosis Day is Tommy Whitelaw who gave up his career to care for his mother.
tommy and me

Check him out – @tommyNtour and http://tommy-on-tour-2011.blogspot.co.uk/. He tells the story of his mother Joan receiving a diagnosis, being told to come back in six months and heading home.

 

Your life as you know it is going to end – see you in half a year. There are ways of living as positively as possible with dementia, of not letting it define you but there is no cure.

You don’t recover from dementia. I, despite a dented head and a left shoulder which stubbornly refuses to work properly, am truly lucky. I am getting better.

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Care – What Price Dignity?

“I’ve been to nursing care homes and I’ve sat in the car and cried…there’s no way my mum is going in there.”

Words can sometimes have the same effect as a punch to the solar plexus. These came from a report this week on Sky News about one daughter’s search for a home to care for her mother. To care. She found one and sold her own home to pay the fees of £1000 a week. I’ll give you a moment to take that in. £1000 a week. £50,000 a year. What price the love of a daughter for her mother?

It’s nearly seven years since my sister and I began the search for a care home for Mum, a search which ended happily at The Firs. We were lucky because my father had left us the wherewithal to find the best place we could. Hundreds, thousands are not so fortunate. The message is stark – if you have the money, (if you’re “self-funding” as if Mum had a clue what she was funding), you have a choice. If you don’t, you have to put up with whatever the state can provide.

There are some very good care homes out there. I know. I’ve seen one or two of the best and one or two at the other end of the scale. The prevailing view, though, is of a system in crisis and with good reason. The recent storyline in Silent Witness focussed on two horrific examples which has probably not done much for public perception, although the twist at the end made me smile and cry at the same time.

Away from the political posturing and departmental name changes to make us think that social care is suddenly a dominant issue for our leaders, one thing is abundantly clear. It is unacceptable in 2018 that good care should be dependent on the ability to pay. It’s about the dignity of every person who needs care. And it’s about our dignity, as a nation. If we can’t look after each other, if we can’t value each human life, then what are we here for?

 

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Happy Birthday Mum

mum birthday

It’s Mum’s birthday. Or at least it would have been. It’s 12 months since that photograph was taken to celebrate Mum’s  birthday, her 80th and her last. The final decline started soon after and she left us a little over three months later.

Today, I’m remembering birthdays past. The first after she’d moved to The Firs Care Home when my sister arranged for all to gather for lunch in a village nearby. Mum wasn’t sure what was going on. Even then, the concept of opening presents was a thing of the past. Back further to Mum’s 70th birthday at which friends old and news gathered. Her present was a series a family photographs, precious, precious reminders of the time before her life began to unravel. OLYMPUS DIGITAL CAMERA

Back further to a birthday in the late 1970s with a new fondue set. I think Dad had won it in a raffle but we felt we were living the high life. Mum conjured up four home made sauces – she loved a culinary challenge – and I failed to get the hang on keeping my cube of steak attached to my fondue fork while it sizzled gently.

Memories, so very important. These are the images of Mum imprinted on my mind, before and after dementia came into our lives. Through my association with the Alzheimer’s Society, I meet people whose dementia journeys are beginning. (Everything, it seems, can be described as “a journey” these days but I think the term is highly appropriate in this case). Every day, people take their first steps, perhaps afraid, perhaps uncomprehending, perhaps relieved that “it” now has a name.

Mum placed herself in the third category and, in the early days, was very open about her diagnosis of Alzheimer’s. Time passed and Mum could articulate less about her situation, but she was still there and the  joy of spending time with her remained. I have many happy memories of the closing chapters – one is captured by the photo at the top.

Happy birthday Mum. I miss you today. I’ll always miss you, but I’ll always have those memories.

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