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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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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