Let’s Hear it for the Carers

I missed my Christmas Day visit to see Mum. It felt wrong not to set off at about half past eight on Christmas morning, after a hasty breakfast, returning with Mum’s cousin Pam in time for lunch. Now both of them have left us, leaving me with a slightly empty feeling. I miss them both but those feelings are magnified at this time of year. Christmas mornings in the last few years have been spent on the motorway, revisiting my childhood courtesy of Junior Choice on BBC Radio 2. I saw no reason to break my listening habit but pulled up short when someone the song about those mice in the windmill in the Dutch capital, a song so beloved of Mum is her final months. old-amsterdamTears flowed, tears of sadness and tears of joy of an unlikely but laughter-filled connection made late in the day. Mum would smile with unconfined pleasure as she bellowed “Where” in the chorus and for a fleeting moment, all made sense.

Mum laughing

So a different Christmas for me, albeit one with Mum in my thoughts as ever. For many people, though, Christmas Day 2017 was remarkably similar to any of the 358 days which had preceded it this year. For those whose duty is care, paid or unpaid, there is no break from the routine. I had a message from a friend whose father is living with dementia and who is now coming with a diagnosis of terminal cancer as well. So, Christmas Day was spent at a hospital. Another friend was caring for his mother after a pre-Christmas fall. Many things halt temporarily for Christmas, caring doesn’t.

It would be lovely to think that the debt our country owes to all carers will be reflected in the New Year’s Honours List which will be published in the coming days. There’s already an unholy row about an expected knighthood for a former prominent politician, to be honoured for no-one seems quite sure what. Wouldn’t it be lovely if extraordinary people who bring dignity to the lives of those who are fast losing theirs, who put their own lives on hold to love and cherish family members, who carry a burden politicians too often choose to ignore, if those extraordinary people are told by us all how much we value them. For once, they could be in the spotlight.

I won’t be holding my breath.

 

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Time to Think

“I don’t even have time to think.”

How often do we hear that or, for that matter, say it ourselves? I know I say it more than I should, sometimes because I’m genuinely over-run with work and everyday life and, sometimes, possibly, as an excuse for avoiding taking the trouble to think about what is really important.

Well, for once,  I have no excuse, real or imaginary. Five weeks ago, I contrived to fall down stairs while half asleep. Two operations and plenty of bedrest later, I’ve had the chance to reflect on a year which has had more than its share of challenges.

This Christmas, the first without Mum, was always going to be different.

Christmas 2001

My annual visit to The Firs, teasing Mum to open presents which meant less to her year-on-year, won’t happen this 25th. These visits were always very special, always a little distressing. Mum loved Christmas. No, Mum loved life but that love was all the more visible at this time of year. She loved laying out the presents when my sister and I were small,  loved the challenge of cooking for her extended family, loved being the person who brought that family together. Her attention to detail, to making sure we made the most of Christmas, was a thing to behold.

Dad. Mum smile

She and Dad made a great team and Christmas has never been the same since they were parted. I still love the season but it isn’t quite the same.

Which brings me back to having time to think. If Mum’s dementia taught me anything – it actually taught me a great deal – it was the value of living in the moment, living for today. For Mum, there was nothing but today – not even yesterday, not even five minutes ago. My not-so-little mishap could have had a far more serious outcome. If anything could persuade me to follow Mum’s example – to make the most of life and to live for today – it was this. None of us know what is round the next corner.

Happy Christmas Mum. You will be with us, in our hearts and our minds, this year.

Mum Rudolph

 

 

 

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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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Pam

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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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