dorothystewartblog

about writing and life and God

A long widowing

I have wonderful friends. My women friends are wise, feisty, bright and lovely. But recently, one friend who ticks all those boxes was having a hard time of it. She’d had a stroke and though she was recovering magnificently physically, she was finding life hard and difficult. Her husband of many decades, who suffers from dementia, had finally agreed it was time for him to go into full-time care, but strangely this did not help her emotionally.

And now I know why. She is being widowed. As I was, four years ago when my husband went into an end-of-life care home. As the days and weeks went by, he became less and less the man I had known, the man I had married. The person I was visiting was a stranger, living a life separate from me, mainly unknown to me. Our points of contact were less and less.

And as the dementia overwhelmed his mind, I could no longer share the daily happenings of my life, or the worries about the boiler or the car. He could no longer help me. He was no longer able.

And the drift apart became an uncrossable chasm. He was someone else. And I was stranded on the other side.

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To all intents and purposes, I was a widow. The helpless tears I shed after every visit were grief. Just like a widow visiting her husband’s grave.

I realise this, looking back. I thought it was depression! I comfort ate, put on weight, neglected myself, my home, my work. I ricocheted emotionally from manic (got to get a grip!) to despair. And I scolded myself and struggled to pull myself out of it.

Looking back, I wish I had been more gentle with myself. I wish someone had told me that the long goodbye was in fact a long widowing. That my reactions were normal and reasonable.

 

The big challenge for the dementia spouse is how you will deal with this person who bears your loved one’s name but is now nothing like them. Marriage vows call us to keep loving and honouring in sickness as in health. It’s not easy. But oh, I pity today’s unmarried couples who do not even have the promise of loyalty and care till death do them part!

The dementia spouse walks a hard road as they watch their loved one recede further and further from sight or any hope of connection. It is a long widowing.

But there is One who will walk with you and carry you, if you will let Him. I frankly could not have walked this road to the end without Him. ‘The Lord is my shepherd.’

I am so grateful.

 

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Blog Mark II

I started writing this blog more than 5 years ago. August 2012 to be exact. I declared then that I had a plan. I was going to write the blog every day. (How crazy was that? Just like a New Year’s Resolution and with as much chance of fulfilment!)

Monday to Thursday I would share the fascinating facts revealed by the research for my latest book (When the Boats Come Home, about the fisher communities of the East Coast. It was published in 2014).

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Then on Fridays and Saturdays, I would write my Dementia Diary about my experiences with my husband John and his dementia, which had been diagnosed 5 years earlier. Some of those many posts made their way into my second book dealing with caring for someone with dementia, Still Caring, published in 2013.

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Sundays were planned for writing about faith and life and God as I struggled to keep walking with Him – and my husband – through the valley of the shadow.

I kept to the plan for quite a while. But now it is time for a change of direction. I have moved – or been moved – into a new season of life. My husband John died on 2nd November and I am now a widow.

For the second time.

At first I thought: I can do this. I’ve been here before so I know what to expect. And secondly, because John had dementia, I had lost the person he really was many years before. I had done a lot of my grieving in advance. Surely I was in a better place to deal with this experience than last time?

Wrong. -ish. Nearly a month on and I’m still standing around gawping like a tourist wondering where I am and where I’m going and why isn’t there a tour guide?! Being me, I’ve already downloaded several books on widowhood to my kindle. Some were helpful, some not. So I’ve decided to try to make sense of this – this time – on my own.

This time is the operative word. Because it is completely different from last time. Last time was a sudden traumatic shock and if it hadn’t been for my friends and my church, I would have gone under. (I’ve written about their exemplary love and care for me in ‘A Glimpse of the Kingdom’ in Geoffrey Duncan’s Seeing Christ in Others, Canterbury Press, 2002.)

This time I’m 23 years older. I live in a different part of the country. I belong to a different church. I have different friends. It was a very different relationship which has come to an end. My feelings are different -ish!

Whether a death is long-expected or out of the blue, there is shock. I operated on automatic pilot for several days this time. I look back and wonder did people think me heartless? Or did the wiser ones understand? When the shock hit and my knees buckled, I was ridiculously surprised! Why is this happening? I was prepared – surely I was prepared for his death? But not for the wave upon wave of grief which drenched me when I was unawares.

And anyway, who was I weeping for? Surely not for John was so gloriously released from the horror of dementia? John who in a rare moment of lucidity had assured me of his faith in Jesus Christ and the new life awaiting him?

No. I have been weeping for myself. For what feels like long wasted years – the dementia years chronicled in the Dementia Diaries. For all that never was and now never can be.

Some of the weeping is simple selfish self-pity – oh poor poor me, as if no one else was currently suffering much, much worse! And there is fear – fear of the unknown, fear of the future, fear of the vast open possibilities out there now that I don’t have to stay within a fast drive to the Care Home to deal with an emergency.

Yes, I have emerged from the Valley of the Shadow of Death, but it still casts its baleful gloom. The funeral is a few days ahead. Maybe once that is over I will be able to see a bit further.

Or maybe not.

Does that matter? Again, maybe not. ‘For we live by faith, not by sight.’ 2 Corinthians 5:7.

I’ll keep you posted.

 

 

 

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On eagle’s wings

Once upon a time, a long time ago, my sister and I were visiting our cousin’s grandfather at his home in Langwell, where he was head gardener to the Duke of Portland. The gardens were a magical oasis of lily ponds and smooth green lawns behind high hedges keeping out the winds and the cold.

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One day he took us for a walk out into the wilderness that lurked outside the gardens. There he pointed to the sky above a jagged mountain peak. ‘Can you see the golden eagle?’ he asked.

There was an eyrie up there, maybe even baby birds, readying for the big adventure of flight, soaring high above the countryside – wild and tame.

It’s been a while since I ventured out of my nest. Three years almost since I saw my sister. Considerably longer since I did that long solo drive to the north. Eight years since my husband was diagnosed with dementia and my life snapped shut like a trap.

I’ve thought about going away, having a holiday, a break, more than once. Looked at maps. Calculated mileages and times. And then put my maps and guidebooks away.

It is said that parent eagles have to encourage their young to leave their nest. They stir up the nest and drive the timid ones to the edge, beating with their huge wings till they’re tipped over. Scary but essential. The young ones would die of starvation if they tried to stay in the nest for ever.

The parent birds keep careful watch, ready to swoop and grasp a tumbling youngster who hasn’t worked out how to use his wings.

Deuteronomy 32: 11 says: ‘As an eagle that stirs up her nest, that flutters over her young, He [God] spread abroad His wings and He took them, He bore them on His pinions. So the Lord alone led him.’

And that’s what I’m feeling as my time to leave my nest approaches. God has led me thus far, He’s beating His wings and saying it’s time to make a move. But don’t worry. He’ll be there to catch me should I panic and forget how to do this.

If you’re feeling it’s time for you to leave somewhere that’s become comfortable but is now wrong for you, then maybe that’s what He’s saying to you too. Yes, it’s scary. But essential.

And He is completely trustworthy.

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Start here

I can recognise burn-out. Been there before, got a couple of t-shirts. Still, it creeps up and denial tries pushing it away. Then God said STOP. Well, God doesn’t actually speak in capital letters like Mort in Terry Pratchett. But there’s something insistent about the still small voice when He says ‘Just stop now. Clear your diary. For the summer.’

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Oops. My jam-packed diary. All those preaching engagements, talks to ladies’ meetings, planned trips etc etc and even more etc.

Yes, that one. Big swallow here. And as I sidled up to it, things started happening. The way they do when God’s moving things in your life. First a major trip north was cancelled. Then ‘words to the wise’ were spoken… and things that looked difficult to the point of terrifyingly impossible to change simply removed themselves effortlessly. Till the diary was cleared.

And that’s scary. Waking up with nothing planned.’Treat it like a holiday,’ I was told. ‘Take yourself out. Enjoy.’ So I did. And gradually the tension started unravelling. When friends asked how I was, I really meant it when I said ‘Fine’. Days sauntered past. I slept better. I found acceptance appearing more often in my emotional kitbag and as my husband’s deterioration reached the point where he no longer had a clue who I was, I was surprised to cope perfectly well and not be poleaxed by distress when I got home.

I sat in the sun. And tried to read.

But could not settle.

Books did not hold my attention or interest. Favourite authors seemed dull. And then little nudges began. A chance comment about frozen meat ships from South America. A ring with the word Mizpah on it. And the desire to write resurfaced and began to grow from a vague thought to a decided itch that needed to be scratched. Like burn-out, this is a familiar feeling: when I get bored enough I have to write!

So on Monday, I sat down and got started. Chapter 1 page 1. ‘The Mizpah Ring’. Book one of a trilogy. Once more it starts in my home town of Wick, Caithness, Scotland. Again it’s a Christian historical but this time begins in 1897. My heroine is called Hannah, her nasty sister is Pearl. (And if you hear the echo from 1 Samuel 1 of Hannah and Peninnah you may have a glimpse of their characters.) The story will cover three generations of four families and we shall see how the sins of the fathers do dog the heels of the third and fourth generations, but how faithful love can redeem it.  The background research, much done already, is going to be a joy and delight.

So far I’ve got to my desk for the first hour of each day and the printed pages are beginning to mount up: one hour or a thousand words, whichever comes first. And I’m looking forward to tomorrow.

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When is it time to write?

I haven’t written anything for ages. Writer’s block? Maybe. Run out of steam? That too. Mainly lack of motivation. Lack of seeing the point. After all, why write if nobody will see it? If nobody will  say something positive about it? If there’s no end-result?

Let me amend that first statement: I have been writing things for Sunday services. I don’t really count those as writing because they’re designed to be spoken. I tend not to do ‘sermons’ because I just do not believe that today’s congregations enjoy long spiels. They’re used to soundbites and commercial breaks and lots of visual stimulation. So that’s how I package what I do.

And generally, there are lovely people who think you need to be encouraged who will come up and say it was ‘lovely’. Even better you may get some brave soul willing to confront you for talking rubbish (as they see it!). At the very least, there is usually some kind of feedback.

But even when there isn’t, I can rest on what I was taught when I was learning to do the standing-up-front-at-church bit: my job is to do my job as well as I can — prep, study, delivery — then it’s God’s to do with as He chooses. One person sows; it’s someone else’s job to reap. So I spend an hour most Sunday mornings doing the sowing and not checking for green shoots afterwards. (As a peripatetic lay preacher, this is my privilege!)

So why can’t I apply this to writing and just write? I think one problem is that I’ve been living on my own for a long time now and before that I was used to a partner being at least slightly interested in what I was churning out and willing to read it. That audience of one was sufficient to keep me going.

But at heart, the dream was publication. I think the problem here is growing up in a paper-based culture – not only did I spend most of my early years with my nose in a comic/magazine/newspaper/book but I have spent a large chunk of my life working in the production of newspapers/magazines/books – so for me, the correct destination for words is print for other people to read.

My track record demonstrates I can do that with non-fiction. Nine books and countless published articles under my belt. But sadly they in no way compensate for the dusty piles of unpublished novel manuscripts under my bed!

I want to write fiction, published fiction! Or at least that’s what I always thought. I sent out the last two little lambs in February and then set myself to waiting in patience. I told myself I wouldn’t allow myself to get stuck into anything else till I got some kind of steer in the form of a reply. If the historical novel produced interest, I’d launch into the next one. If the contemporary crime novel won a positive response, I’d tackle the second one in the planned series. Meanwhile, I would not tinker, would not push on doors, would not be impatient…

Those of you who valiantly read this blog in the past know about my personal situation – my husband with dementia in a  care home. He has now moved to a full-on dementia end-of-life home where he is very happy and settled. He appears to think he’s in a country house hotel where a number of the residents are loopy (his words) but that doesn’t seem to bother him. He appears completely oblivious to the more severe cases. I continue to visit. And this is another situation where what I am doing is waiting, though here it is the timing not the outcome that is unpredictable.

I am not a patient soul. Maybe that’s what this is all about: God decided I needed to learn patience so here I am in a place where patience is badly needed?

Real life is complicated, a web of learning and receiving tangled with serving and giving. And sometimes one turns out to be the other at the same time.

So, back to writing: when is it time to write? When someone wants our output? When the cheerleaders are revved up and standing by? When Great-aunt Ann has left us enough money for self-publishing our magnum opus? Or is it when our soul cries out to sink into what we know comforts us and completes us?

I’m still puzzling over this one. Hesitating on the brink. Tippy-toe at the edge of the water. I think I want to dive in. I think I know which book to tackle… And writing this blog is that tippy-toe in the water.

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What do I need to give me the push? Do I need a push? Do you need a push?

Is it time to stop dithering and just jump in?

 

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What’s in a name?

Names matter. I should know – I’ve had several. Some I liked, others I was only too happy to divest. For the record, my favourite is Stewart. I’m not that keen on the Dorothy bit, though having plain Mary as a middle name is a redeeming factor.

Last time’s blog seemed to hook many readers on the title and spurred lots of discussion on the Ryme of the Ancient Mariner. Quite a far cry from concerns about a husband with dementia in a  care home.

And that’s an interesting name: ‘care home’. I was having coffee today with the friend who introduced us to Norwood House. We’re both convinced it’s pretty much the best place for miles around… because the staff genuinely care. And it’s that genuine care that is making such a huge difference to me and my husband.

After Sunday afternoon’s unhappy visit – and learning what lessons I could from it – I dropped by for lunch yesterday. A good idea. Food gives us something to talk about as well as focus on and eating it fills any gaps in the conversation. Staff come by and chat. And afterwards there was a live show of songs from the 40s, so I could take my leave without guilt.

As we sat in the lounge drinking our coffee, I was able to observe the other residents – chatting together, looking at newspapers, and being assisted from wheelchairs by cheerful young women who were clearly extremely well trained. The atmosphere was positive and cheerful – residents  were obviously relaxed and well cared for.

I’m telling this to publicize the fact that there are good care homes out there with excellent staff who really care. It eases the burden on relatives.

But it is still a burden.

As another wife said quietly to me as we signed out yesterday, ‘It’s hard’ and it is. It isn’t abdication. We’re not set free. It’s simply another stage along the road. A new variation on the same tune. But if you’ve found a real care home, that tune is sweeter and maybe a little easier to sing!

Meanwhile it’s still raining, so here’s a cheer-up pic for today!

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Water, water everywhere

I used to live on the Somerset Levels, halfway between Taunton and Yeovil. And yes, there was a certain amount of flooding every year but nothing compared to what people are experiencing at the moment. Today I spent the morning with friends in Bungay, 15 minutes north of here. My friend’s house is high up with stunning views of the Waveney valley. And the floodwater is encroaching here too.

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There’s something scarily inexorable about water. Once it escapes riverbanks and drainage channels, there seems to be no stopping it.

I feel a bit like that about my husband’s dementia. I visited him yesterday afternoon. To continue the water/flood metaphor, it was as if the water had been safely/neatly channelled in pleasant manageable channels on my last visit. I’d even enjoyed the previous visit (though maybe the glass of white wine provided with my lunch helped!) – but this time it was as if I had been one of those overconfident Charlies who attempt to drive their cars through deepish water and get surprised when they’re swamped. And yes, this last time, I got swamped. And stupidly surprised.

It’s now almost 24 hours since the start of my visit. How could I forget it takes me 36 hours to recover? Just because this home is a much nicer place, a really good quality specialist provider of the care my husband needs, it doesn’t take away the fact of his dementia nor its destructive impact on us both.

But I’d forgotten. And as a result I have to sit in my swamped car and await rescue. My friends do their level best and I am grateful – for the lovely hugs, the phone calls, the Facebook messages, the thoroughly excellent caring advice. But there is no Fire Brigade or big farmer’s tractor coming to pull me out of the flood. The flood is where I am. All I can do is wait for the waters to go down. And they will. Till the next time.

One of the big problems for both the Waveney Valley and the Somerset Levels is that the land has become so saturated by so much rain for so long, that it takes very little more to create disaster rather than minor inconvenience. And it’s the same for any of us stuck in long-term situations where our emotions and our ability to cope went under a long time ago.

David Cameron promises dredging – when it’s safe enough – as a preventative for next time. Unsurprisingly, Somerset folk aren’t holding their breath!  For those of us who know that the waters aren’t going to go down – maybe for years – there are few answers.

I am a Christian. A woman of faith in Jesus Christ. But I’m finding it tough, I admit, to believe in a God of love and mercy who wants only the best for my life – while, frankly, I feel like I’m in a living hell. And as I look at my husband – and the other people in the home who are further down the dementia road than he is – my faith is sorely tested. Where is the mercy in this?

I can see the love – for these people are being looked after as lovingly, as kindly, as well as possible. And amazingly, I can feel God’s love for me, alongside me, right in the middle of the floods.

Stuff happens. He gave us free will and we made a hash of it. As a result there are horrible diseases, broken families, bad things in our world, and few if any of us manage to avoid at least some of them.

But God is still there. And He cares. He really does. So as I sit in my swamped car in the flood I drove into, I reckon the only thing to do is shift over into the passenger seat and let Him take the wheel.

But now, this is what the Lord says – he who created you… ‘Fear not, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you.’ ” Isaiah 43:1-2a

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Hope that never dies

Hi there. It’s been a while – last year, when everything was rather miserable and foggy – my life and the weather, both! Today’s still grey but I’m glad to report the fog seems to have lifted on my life. And looking back over the past couple of months, I’m amazed at the changes – and how delicately God has woven in perfect timing and paths that crossed and good things.

My husband, John, is now very happily settled in a specialist dementia-care home. We’d been to see it when he was well enough to agree it was the right next place, but also to decide that the time for a move had not yet come. When a room became available, it was time for a move – and John was enthusiastic about it. He loves the new place – and so do I. I am welcome there and treated with kindness. John is receiving the care he needs, from cheerful compassionate people. And my visits are enjoyable and therefore more frequent.

And yes, I know about honeymoon periods!  But I’m counting my blessings and thanking my heavenly Father for His goodness.

It may be a grey day out there, but where God is there is hope that never dies, so here’s a hopeful picture to brighten today!

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After the storm

Thursday night, the worst sea storm in 60 years hit East Anglia. Friends had to be evacuated from their homes, roads were closed, only opening this afternoon. So I took myself down to Southwold for a walk along the beach to enjoy the sunshine and see the damage.

Storm-damaged beach huts, Southwold, 7/12/13

Storm-damaged beach huts, Southwold, 7/12/13

This is not uncommon. The beach huts are very close to the edge of the promenade and frequently get battered by winter storms. Each year repairs are essential, but it’s sad to see people’s holiday delights so tattered. Especially when you remember the crazy prices these beach huts fetch nowadays: over £60,000 each!

Today there’s still a bit of splash on the sea, catching the afternoon sunshine.

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And when I reach the south end of the beach, the Gun Hill Cafe is open for hot drinks so I can sit outside and sip a black coffee.

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As I walk back along the beach to my car, I spot a gull standing motionless on a post with the waves splashing around him. He’s not bothered. He knows he’s safe and can fly away whenever he wants to.

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And me, walking through this season of storm in my life, I’m reminded there’s a Rock for me to stand on and sheltering wings. And that makes all the difference.

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Back on the air

The last time I posted on my blog, I’d been interviewed by the lovely Lesley Dolphin at BBC Radio Suffolk. Today, I found myself in what is possibly – even probably – the most scenic radio recording studio in the UK: the Casino on Gun Hill, Southwold, overlooking Sole Bay.

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It’s been a glorious day and there were lots of people on the beach – even people swimming. The temperature in the studio – with the door open – was 23 degrees Centigrade. What a fabulous place to work!

I was interviewed by Sylvia Jagger for her magazine programme at 12 noon. She had read my book, Still Caring, and she had some experience of coping with loved ones in residential care so her questions were well-informed and sensitive. This isn’t always the case! I must admit to building up quite a case of nerves before live interviews like these. The interviewer can ask anything and there’s no going back!

Blyth Valley Community Radio, broadcast on 105FM, may be a small concern but I was impressed to learn that there are apps for listening on tablets and smartphones as well as a website(www.blythvalleycommunityradio.co.uk) and listeners come from all over the world.

Being interviewed in Southwold on a sunny day, I just had to allow enough time for a stroll along the beach. And as I walked through the little Monday market on the way back to my car, I stopped off at the fish stall and bought a dressed Cromer crab to go with new potatoes and salad for my lunch.

I reckon that’s a good day’s work!

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