The Pain Goes On

I spent time last week with some people whose lives have felt the full impact of dementia. My conversation with one lady in particular stays with me. She lost her husband to dementia two years ago. It was, she said, a relief in some ways. He had spent his last months in a care home and she had visited him every other day, experiencing, at first, guilt and then that awful sense that the man with whom she had spent so much of her adult life no longer recognised her.

Two years on, there appears to be a new pain in her life. Once very outgoing and busy, she now struggles for any kind of motivation. She can’t seem to interest herself in pastimes which were once so much a part of her daily life. Her family is worried about her, she says, and she wishes she could “snap out of it.” We looked at each other. No words were needed.

Dementia’s icy grasp doesn’t necessarily loosen when a loved one dies. Watching a loved one slip out of reach while still alive is painful beyond words. What is crueller still is the pain which, for many, continues beyond death.

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This photograph was taken a couple of years ago. It’s possibly the last I have of Mum in a garden, throughout life her second home, and her cousin Pam. Mum and Pam were close and for Pam, Mum’s creeping (then galloping) dementia was a source of deep and enduring pain. In the 1980s, when less was understood and even less accepted about dementia, Pam had lost her father to the disease. For a couple of years, she lived alone with him, in a house they had shared since the death of her mother in the early 1970s. Every day, Cecil – Pam’s father – would tell Pam he wanted to go home. Pam would look down, shaking her head slowly as she talked about it. She had lived through it once and although she didn’t see Mum too often in later years, Pam’s distress was sometimes beyond words.

Last week, at the age of 90, Pam passed away. Her mind remained razor-sharp until the end but her body betrayed her. Unable to walk beyond a few steps since breaking both her legs last Christmas, crippled by osteoporosis, Pam would often muse about whether it was better to lose control of your body or your mind. She had seen the latter, at very close hand, twice but her spirit remained indomitable, until almost the very last.

Thanks for understanding Pam. I’ll miss you.

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Walking for Mum

A charity, or a business for that matter, needs a device with which to promote its key objective. Think Macmillan’s Coffee Mornings for example. For us at the Alzheimer’s Society, it’s Memory Walk, a series of fund-and-awareness-raising events which take place up and down the country across the autumn.

Today, Memory Walk comes to Birmingham. I have been involved with the Birmingham Walk for several years and, gathering at the starting line, I’m always struck by the messages pinned on to t-shirts and jackets. “Walking for my Dad…”, “In memory of my sister… .” Today, for the first time, I’ll be walking in memory of Mum. I’m sure a tear or two will fall, as thousands of us Unite Against Dementia.

Four months on, I find I’m missing Mum more, not less. There are things I want to tell her. Although I kept on recounting what I had been up to over the weeks, months and ears that dementia tightened its grip, I’m not sure how much, if anything, made sense to her. Somehow, though, it was comforting to share thoughts and feelings with her, as I had always done.

I’ll share a thought or two, silently, as I walk today, comforted in the knowledge that many others around me will possibly be doing the same. Here’s my first thought for the day – every step is for you Mum. I miss you.

mum and me

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Time Passages

It’s a while since I’ve written but Mum has been on my mind a lot this week. Perhaps it’s because we’re in the later stages of selling the family home – her home – and perhaps it’s because I’m starting to miss her. I’ve been missing the Mum I grew up with for years, since dementia stole a place in our lives, but now, alongside that, I’m missing the Mum I visited in her care home, the Mum I sang with, the Mum who knew me but didn’t know me.

A song has been playing in my head for a few days. It’s nearly 40 years old and I remember listening to it on the sunny summer afternoons of my childhood. The sun always shine in those memories unless Mum was taking me to watch some cricket, in which case it always seemed to rain. Time Passages by Al Stewart contains the lines:

“Well, I’m not the kind to live in the past/The years run too short and the days too fast…” .

It’s quite quite difficult not to live in the past at the moment. So many things seem to summon memories. This morning, it was the news of the death of Tom Pritchard at the age of 100 in his native New Zealand.

Cricket - County Championship - Middlesex v Warwickshire - Third DayTom played cricket for Warwickshire in the 1940s and 50s and he was Mum’s favourite player. I remember Mum pointing him out to me on one of the rare days we spent at Edgbaston when it didn’t rain. He was back on a visit. She told me what a wonderful bowler he’d been and what a great ambassador he’d become for his adopted home. She loved remembering the great cricketers she’d seen at Edgbaston. How cruel that those memories, along with the rest, were denied her in her last few years.

As I write this, I’m glancing out of the kitchen window. The sun is shining and the day promises to be warm and sultry. It’s the sort of day Mum loved so much. One of the last things Mum said to me, a couple of weeks before she died, seems appropriate today:

“I want to go to my garden.”

I think that today, as so often in the past, I’ll take my lead from her.

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Three Months and Counting

It’s three months since Mum died. In some ways, it feels like yesterday and in others, a lifetime ago. Even reading that back feels strange but my regular visits to Mum, the singing, the tears, the laughter, seem to belong to a different part of my life from which I now feel strangely detached.

I met up with a dear friend whom I hadn’t seen in those three months and she asked me about my feelings for Mum twelve weeks on. Mum visits my thoughts every day, whether in the practical business of settling her estate and selling her house, or via more emotional paths. Rarely, though, do I think in any depth about losing Mum. Today, I did. I miss Mum and I miss seeing the staff and residents of the care home. They were part of my life for six years. I’m also missing the Mum I knew before dementia cruelly picked apart her life. So, thank you dementia, for a double dose of mourning.

But please don’t get the idea that I’m mired in mourning or sick with sadness. I’m not. I love the challenge of playing a small part in making life better for those affected by dementia today and in the future. I’ve found my appetite for campaigning for the Alzheimer’s Society renewed. Never has the subject of dementia been higher in the public consciousness and never have we had a better chance of making a real difference. Those who preside over us seem stuck for ideas – the “dementia tax” proves that.

So, thank you Mum. You gave me so much when you were alive and you’re still there, inspiring me today.

The blog will go on because she’s still my Mum.

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Ta-ra a bit Mum

IMG_2801IMG_2802 copy

We said goodbye to Mum yesterday. The sun shone brightly which felt entirely appropriate – the merest glimpse of sunshine was usually enough to have Mum heading for the garden. We were surrounded by people who had loved Mum and people Mum had loved in return, including her second family from The Firs. We swapped stories of Mum before dementia’s grip took control – we celebrated a life well-lived.

The service began at 11 as we joined a national moment of silence for the victims of the horrific, senseless attack in Manchester. It was a timely reminder that, although we were grieving for Mum, she had lived a rich and, until relatively recently, a fulfilling life. Many who attended a pop concert on Monday have been denied that opportunity.

We left the church to Perry Como’s Magic Moments.

“Time can’t erase the memories of those magic moments, filled with love.”

So, Mum, ta-ra a bit. The fight against dementia will go on, in your name and in the names of so many, many others.

I’ll miss you, we’ll miss you.



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Feeling Very Dementia Aware

It’s Dementia Awareness Week, a time to shine the spotlight on people living with dementia and those who care for them. And a time to reflect on just how many people are affected by this wicked disease. Normally, I would give at least two Dementia Friends talks and try to attend as many associated events as possible, but not this year. Tomorrow, I’m going to the Alzheimer’s Society’s annual conference but that’s the extent of my involvement in DAW.

And yet, and yet, I’ve never been more dementia aware than I am at the moment. 13 days after Mum’s death, all I want to talk about is her and that means dementia too. For all I talk about wanting to remember Mum as she was BD (before dementia) and that will be the main focus when we gather to celebrate her life in a week’s time, I find I can’t separate Mum from the disease.

It’s like a double mourning. I miss the Mum I grew up with, but I miss the Mum I’ve been visiting in The Firs for the last six years. In essence, they were two people, linked by one, indomitable spirit. I’m also missing my father. He died eight years ago, a week or two before Mum’s diagnosis was confirmed. I don’t think Mum ever mourned the man she’d been married to for 46 years and perhaps I didn’t either. While Mum was alive, a part of Dad lived on. Now, they’re both gone.

M and D Trinidad

The funeral, or service of celebration as I prefer to think of it, will be a chance to think of happier times. Many of Mum and Dad’s closest friends will be there and there will be smiles and laughter. But Mum’s dementia won’t be airbrushed out of a portrait of her life. It was, sadly, part of her story and if that story helps to raise awareness, this and every week, I know she would be happy.

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