Dementia and Drugs

I haven’t talked about medication much in this blog, partly because I haven’t had much to say on the subject. I’m no medic or scientist, as my school grades will attest. I only managed to scrape through biology o-level thanks to Mum’s remarkable patience, testing me again and again as I revised, seemingly unable to grasp the simplest concept. I wanted to play cricket. She insisted on quizzing me on photosynthesis. As a postscript, I can tell you scored his first test century for England in the summer of 1980 but don’t ask me to explain the difference between aerobic and anaerobic respiration. I hardly knew then and I don’t know now.

But I digress. Recently Mum has become more anxious, sometimes distressed and often reluctant to have help with her personal care. I witnessed an early example when Mandy, Mum’s hairdresser, was trying to wash her hair. Watching Mum resist, crying for her mum, I felt completely empty inside. This shouldn’t be happening, but it was… and has again since. Mum has also started to rub her forehead, repeatedly. Distressing for those of us who love her but what might it feel like inside for Mum?

So, Mum’s GP has prescribed lorazepam, commonly used to tackle anxiety. She first took the drug a couple of days ago. I visited her yesterday and was shaken by what I found. Head down, eyes closed, Mum acknowledged my presence with little more than a grunt and try as I might, I could not encourage her to raise her head or open her eyes. Was this right? Is this how it’s going to be from now on?  I spoke to staff at the care home and rang Mum’s GP practice. Her GP wasn’t working but another doctor called me back. These symptoms, it seems, are quite common when a patient is first prescribed lorazepam. We’re monitoring how she responds over the next few days.

This is new territory. Until now, Mum hasn’t “needed” extra medication to control her behaviour. I feel completely out of my depth. Maybe, a smile, a laugh and a song, Dr. Duncan’s prescribed treatment, is no longer sufficient. Perhaps, like the dementia drug Mum started taking in 2009, it no longer does its job.

And yet, as I struggled for even the merest eye contact yesterday, a moment to treasure. As I always do, I told Mum that she’s still my Mum and that I love her. Normally, I get a smile and a sense that she knows what I am saying. Yesterday:

“I love you too dear.”

I can’t remember the last time she said that. Perhaps all is not lost.

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A Little Chuffer

That’s what I am apparently. I’m a little chuffer. This came at the end of a difficult visit today. Mum had just finished lunch and perhaps it was post-prandial relaxation, but she kept her head bowed. It was the first time in our eight year dementia journey that Mum has seemingly not wanted to make eye contact with me. Another sign?

I told her about a recent weekend break in Pembrokeshire, to the place I’d taken her on her last holiday seven years ago. Of course she wouldn’t remember that but it’s hard when her response is a jumble of words, most of which appear made up and none of which make sense. Sense? Is there anything about dementia which makes sense?

As so often, music proved our saviour. Mum nodded along, head still bowed, fingers tapping. But when Ronnie Hilton told us he’d seen the mouse he spies every time I visit Mum, she shouted:

“WHERE?”

He’s there on the stairs, Mum, where he always is.

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Eventually, Mum lifted her head. She smiled, her eyes suggesting that, chuffer or not, I’m still there for her, somewhere.  We said goodbye with a kiss. Until next time. Mum, me and those mice with their clogs.

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Mothering Sunday

mum and me

This is a photo of Mum and I on her 70th birthday. It sits on the windowsill in the front room. I often find myself looking at it. The photo was taken ten years ago, give or take a month. These days I find it hard to match the Mum in photos like this with the Mum I visit. Mum on Mothering SundayAnd yet, in spite of the exceptionally grumpy greeting I received when one of the carers announced my arrival on Mothering Sunday (“Oh God”, rolling her eyes) she was still definitely, defiantly, my old Mum. She opened her card, after a fashion, and seemed pleased with the flowers I’d taken. And she laughed, and laughed, and laughed. But, much more importantly, Mum held my hand. Recently, she’s been reluctant to share any contact but, yesterday, she held out her hand to me. Little things mean such a lot, to paraphrase one of the songs we used to listen to.

On my last visit, Mum scarcely registered my arrival and I’m not sure she knew the grinning fool sitting and singing in front of her. I left feeling hollow, but yesterday, there was a smile on my face as I walked back to my car. Dementia, cruel dementia, plays with your emotions but for once, holding Mum’s hand, I didn’t mind.

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It’s All About People

I received a lovely message the other day. It was from a social media friend, someone I have never met in person but someone whom I feel I know via conversations of 140 characters or fewer. My “virtual friend” talked about how she’d lost her mother to dementia and how, after the initial diagnosis, this blog had helped her.

It’s always gratifying to discover that my ongoing fumblings to make sense of dementia can bring a measure of comfort or support to others. It feels like a reciprocal arrangement because, often,  I have found strength through the writing of others: people I have never met in person but whose experiences resonate so strongly with mine.

I’m writing this on the train back from London after a meeting at the Alzheimer’s Society. We discussed the Society’s new, ambitious, strategy. We talked about cost, about how we would measure its impact, about the risks associated with some bold statements. I’m very glad we also talked about people – people living with dementia, people directly affected by this pernicious disease, people who care. It must always be about people, individuals whose lives are inextricably linked to dementia.

It’s been a busy few days but meetings like this offer a sense of purpose.

Busy. It’s a word I often use:

“How are you?”

“Oh, I’m busy.”

The question is about my health and well being but I often choose to talk about what I’m doing. On Sunday, I asked Mum how she was.

“Quite busy,” was the answer.

“Good,” I replied, for want of something better or more profound to say. “What have you been up to?”

“Lots of things.”

Needless to point out that Mum could tell me about her busyness. No matter. “Busy” is what she might have replied to the same question a decade ago. Then, she was always involved in some project or other and people were always at the heart of what Mum did. Firstly, it was her family, immediate and beyond. Then it was her wide circle of friends, but it was also about people she didn’t really know. People whose lunches she delivered once a week, people she served in the local hospital’s coffee shop.

Busy helping people, that was Mum.

Writing that reminded me of a line from Charles Dickens’ A Christmas Carol:

“Mankind was my business; charity, mercy, forbearance, and benevolence, were, all, my business. The deals of my trade were but a drop of water in the comprehensive ocean of my business!” (i)

Mum knew it, just as the Ghost of Jacob Marley knew it. It’s always all about people.

(i)  A Christmas Carol, Charles Dickens  Ward, Lock & Co  (1843)

 

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The Discrimination of Dementia

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What does make sense is that, as I tell her every time I see her, she’s still my Mum.

International Women’s Day is a timely reminder that in many areas, true equality between the sexes remains a mirage. And a report issued yesterday to mark IWD reinforces that. Women and Dementia: A Global Challenge was published by the Global Alzheimer’s and Dementia Action Alliance, or GADAA. It’s worth reading. https://www.gadaalliance.org/report-women-dementia-a-global-challenge/

Put starkly, it confirms that women are disproportionately affected by dementia – by its prevalence, its caring burden of responsibility and its stigma.

Here are some facts. Dementia is the single biggest cause of death for women in the United Kingdom and it’s in the top ten worldwide. Two thirds of primary carers – either unpaid or in a formal care setting – are women. It follows that if more women are living with dementia and more women are caring for people living with dementia, the stigma which accompanies the disease is going to affect women more than men.

And yet, there seems to be no research dedicated to the impact of dementia on women and no specific policies worldwide to address this impact.

Yesterday’s budget stole the headlines as it probably should. But here’s a story which should also be told. In the years before dementia began to unpick Mum’s personality, she became quite militant in an understated way. As a flag-waving member of the Women’s Institute, she slow-handclapped Tony Blair when he was brave enough to speak at their annual conference, and she championed a series of awareness-raising causes, including prostate cancer at a time when comparatively little was spoken about it. That’s why raising awareness of dementia and of the unfairness of the burden on women would be a priority for Mum is circumstances were different. And that’s why it’s a priority for an increasing number of us worldwide.

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Who Does Mum Think I Am?

I read a sentence which really resonated with me today. It came from the latest  from Pippa Kelly who writes so powerfully about dementia.

“Dementia, when it comes, doesn’t exist in a vacuum, or even in one person, but in the messy, tangled busyness of everyday family life.” c. http://www.pippakelly.co.uk

The blog post is called The Blame Game and focusses on the guilt carers from the family too often feel. It sat uppermost in my mind when I went to visit Mum a few hours later. I woke her gently when I arrived and stayed with her for about 45 minutes. For some of the time, Mum had her eyes closed. Sleep might have claimed her again although she was nodding her heard so I think she was what my father used to describe as “resting the eyes.” Still, I wonder whether I could be doing more to hold that elusive connection.

When she was with me, we looked at some photographs. Mum, it seems, has trouble recognising herself these days. When I asked her if she recognised the person in this photo,

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she responded: “Is it you?”

Later, another photo prompted the same response:

is-that-youI was happier to be mistaken for her, if I’m honest.

Fortunately, Mum seems to enjoy these games and isn’t perturbed by her failure to name the people she’s looking at. So, we laughed and, some time later, I said goodbye, telling her that I love her, that she’s still my Mum, that I’ll see her again soon….as I always do. But the familiar feeling of guilt was hand in hand with me as I went out.

And though the laughter stays with me, so does the look on Mum’s face as I turned back to smile at her as I left: The quizzical look that says “Who was that person who’s just been with me?”

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Let’s Hear it for the Carers

I used to hate it when Mum announced it was hair-washing night. These days, I wish I had some hair to wash, but that’s another story. So, why am I thinking of those long-ago Thursday evenings? Well, today, it was hair-washing day when I called in to see Mum. Mandy, Mum’s lovely hairdresser, was paying her weekly visit.

Mum hates having her hair washed. Worse than that, she finds it very distressing. As Mandy and I manoeuvred  Mum to the edge of the bath, she began to cry softly. Soon, she was wailing as Mandy poured water over her head. I’m struggling to describe the heartbreak of hearing your mother crying for her mother. I managed to quiet her cries once or twice but soon had to call for reinforcements, which is why I’m sharing this sorry tale.

Two carers talked Mum down as Mandy washed her hair. One – J – was particularly wonderful. She has a way of relating to Mum which is very special.

And special is the word here. Good carers are special people. As our politicians wrestle over the corpse of our social care system, trying to score points off each other, the people at the heart of the story are forgotten. People like Mum, riddled with dementia and frightened of a plastic jug of water, and people like J, barely out of school, whose patience and gentle words ease the pain.

Yes, Mrs or Mr Politician, care has a price, but not caring has a cost none of us can afford to pay.

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