It Wasn’t Supposed to be Like This.

Mum said this to me a few months before she died and as you can tell, it struck a chord. It came to mind again last week when I had the privilege to meet Morella Kayman, one of the founders of Alzheimer’s Society in 1979. Morella was the guest of the Society’s fundraising conference and I was lucky enough to be invited along to interview her on stage.

Morella

Morella’s life certainly hasn’t followed the course she might have wished for. Twice widowed, her first husband Lawrence was diagnosed with Alzheimer’s while only in his forties. Morella herself was only in her thirties and the diagnosis came after ten year of trying to get some explanation for Lawrence’s condition.

Her story could be described as sad or tragic and yet, speaking to her, those two words were far from my mind. Instead, it’s inspiring, sad at times of course but filled with love and hope. She remembers the bad times but talks about leaving a lot of space in her life for happy memories. Not a bad strategy if you ask me.

I and many thousands of people owe Morella and her fellow Society founders a great debt. When Mum was diagnosed, my sister and I were floundering. Effectively sent away for six months by the medical specialists, Alzheimer’s Society filled the gap, providing support and answers to some of our questions.

So, no, Mum’s life, Morella’s life and the lives of so many more weren’t supposed to turn out the way they have. But that is only a part of the story.

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I Never Stop Learning

No-one knows everything about dementia. Let me put that another way, no-one knows much about dementia. We know bits and pieces but as far as I’m aware, there isn’t a definitive, widely-agreed cause and there certainly isn’t a cure. The search goes on and more money than ever is being committed to that search but the financial clout of dementia research still pales into insignificance alongside the money devoted to finding cures and developing treatments for cancer. It isn’t a contest and, of course, no-one believes we should spend less on cancer research. It’s just that the chasm between the two should be much narrower.

I lived alongside Mum and her dementia for the best part of a decade and in that time, I learned – sometimes the hard way – ways to support someone with that pernicious disease. And my education is continuing more than a year after Mum left us. I have just finished reading a book which I would recommend to anyone for whom someone close has been diagnosed with a form of dementia.

book

Wendy Mitchell was diagnosed with dementia at the age of 58 in 2013. Since then, she has been a tireless champion for people living with the disease. I have been inspired by her words as a speaker at several conferences and now by her words on the page.

Seeing dementia through the eyes of someone living with it day-to-day is a privilege.  So often we feel we are doing “the right thing” but that might not be the case. I remember visiting Mum and tidying up around her. I probably just contributed to  greater confusion. I tried not to take over when I called in or stayed but I know I did at times. I wish I’d taken more time to encourage Mum to do things with me around the house, no matter how long it took.

I’m not beating myself up about it. I did what I thought was best at the time but now, thanks to Wendy’s words and conversations with others living with dementia, I know better. And that’s the thing about dementia. We’re all learning together –  scientists, doctors, people with a diagnosis, people without a diagnosis, carers, family and friends caught up in this nightmare.

Wendy, I wish you hadn’t had to write about somebody you used to know, but I’m thankful you did. I just wish I’d read something similar years ago.

book 2

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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.

OLYMPUS DIGITAL CAMERA

 

 

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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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