Sheila Janice Jones 03/02/1937 – 04/05/2017

Mum xx

When I started this blog some six years ago, I knew I’d have to write this post one day. This morning, shortly after midnight, Mum died. After sitting at her bedside for two days, neither my sister nor I were with her when it happened – but perhaps that’s how she wanted it to be. I’m so grateful that one person – a special person called Michelle – was at her side, holding her hand when the end came. From the day she moved in, Mum has had the very best care at The Firs but her care over the past few days, as her life ebbed away, topped everything.

Mum lived with a diagnosis of dementia for eight years but probably lived with that cruellest of diseases for several years more. For most of that time, she was cheerful, a smile never far from her lips, a laugh lurking nearby. In the end, Mum could smile and laugh no more. She was so tired and she needed to find peace.

I’ll miss her more than words in this blog or elsewhere can say. For years, I’ve been missing the Mum I grew up with, the Mum to whom I owe so much. Now I’ll also miss the Mum who coped so cheerfully with everything dementia could throw her, the Mum who might not have known my name any longer but whose smile told me she still knew me.

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I’ll miss my regular visits to The Firs, to the amazing staff who made Mum’s final years so comfortable and so secure. To them, we owe so much. The fight to raise awareness about dementia will go on.

The last thing I said to Mum was how much I loved her and that she will always remain in my heart. She’s there now.

Mum

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This is a first. I’m writing this at Mum’s bedside. She’s comfortable but hasn’t been responsive for 24 hours or so. My sister and I are with her. Neither of us know what day or time it is. Spending so much time here has given me a sense of what it must be like to be a resident. Most of all, though, it has allowed us to see the love and care afforded to all the residents. When Mum’s GP said she couldn’t be in a better place, it wasn’t just designed to make us feel better. It was true and just how true is becoming clear.

Late last night, as I left, I bumped into three carers in the car park. I was puzzled as I’d said goodbye to the trio about ten minutes earlier.

“Would you mind if we went back in to say goodnight to your mum?”

Would we mind? It was one of the many profoundly touching moments of this surreal experience. In turn, they went back into Mum’s bedroom, gave her a kiss, and said goodnight. There’s a lump in my throat just writing about it. These are special people.

My sister and I are talking to Mum, remembering happy times together, sharing her company until the end. It’s impossible to know how aware she is of what’s going on around her but one of the carers said that when she told her I was on my way back this morning, Mum opened her eyes. There’s strength to be found in moments like that.

There’s no way of knowing how long we have. I wasn’t sure we’d have this morning but we do and there’s nowhere I’d rather be. I’d like to think that, for Mum, the end is in sight. While I cherish these moments, the thought of her being at peace, true peace, is stronger still.

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The Slow, Sad Goodbye

I can’t count the number of times I’ve set off to see my beloved West Bromwich Albion on Saturday lunchtime and returned, crestfallen, a few hours later. It comes with the territory as a Throstle’s supporter. When I was growing up, Mum would frequently be there to welcome me home:

“Oh dear. Was it as bad as that?”

It often was. Even long after I’d left home, she would ask about the match if she knew I’d been there.

On Saturday, my wife and I headed Hawthorns-wards before calling in to see Mum post-match. To be honest, the result of the match was immaterial – though it would have been a welcome shot in the arm if we’d actually managed to score a goal (five games without one and counting) but immaterial or not, it didn’t stop me deconstructing another home defeat as we crawled through Smethwick’s Saturday tea-time traffic. Time was Mum would have made a similar journey. She was never a fanatic – cricket was more her game – but for a few years in the late 50s and early 60s, Mum had a West Brom season ticket.

So, as I did when I was ten years old, so I did now that I am 52. I told her the story of the match. Is it any wonder I became a sports journalist? Looking back, I can’t be sure how fascinated she was by my analysis of the performance of our left-back in 1974 but I can say for certain that my thoughts didn’t mean much to her on Saturday.

It’s hard to say what means anything to Mum now. Visiting her again this morning, I watched her sleep, waking occasionally, saying a few words which often defy interpretation, before sleeping once more. I’ve taken to reading to her. The first “grown-up” book I remember her reading to me was Little Women. It feels utterly appropriate that I now read the same book to her. We started this morning and I reached page 25 of 2495 (we’re reading it online so the pages are quite short). I told her she had to stay with us for a little while yet so we can finish the book but somehow, I doubt I’ll get much past the first couple of chapters.

Mum’s time is now short. Even from Saturday to this morning, less than two days, there was a noticeable change and not for the better. I’m grateful for the chance to say goodbye – to thank Mum for all she has done for me and to tell her that, whatever I do and wherever I go, she’ll will remain in my heart. It’s a privilege not afforded to everyone and we’re lucky.

But now I think Mum is ready to leave. Who knows whether I’ll finish Little Women or indeed whether West Brom will ever score another goal? I do know, though, that life will never be quite the same.

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A Smile is Worth a Dozen Words

“I don’t know what to do.”

Little of what Mum says now makes any sense. When she does talk, much of what we hear seem to be made-up words. But there are phrases and sentences which, although they seem to bear no relation to what has gone before or what comes after, do “make sense”.

“It isn’t easy.”

“I want to go to my garden.”

I hesitate to try to interpret what’s going on for Mum by interrogating these fragments. I’ve long since learned that trying to make sense of dementia is a fruitless exercise. And yet, and yet, and yet. As we approach the end of this dementia journey, I want to know that Mum is at peace, that she isn’t distressed. But to spend too much time contemplating that is not a healthy pastime.

One thing I can be certain of, though, is that Mum is receiving the very best care. Her GP said as much when I spoke to him on Monday. She couldn’t be in a better place. Monday was a particularly sad day. I sat with Mum for two hours, during which time she barely opened her eyes and spoke but a handful of words. It gave me the opportunity to talk to her, to tell her much I love her and how grateful I am for all she has done for me over the past 52 years. And will continue to do. Spending this time with Mum, however painful some of it seems, has confirmed to me that her influence will live with me long after I’m no longer with her. There is comfort in that.

Mum was a little brighter when I visited yesterday, but it’s all relative these days. Still, as I left, telling her I loved her, her eyes opened and she smiled. Words might not make much sense, but smiles do.

 

 

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Moments

When a loved one succumbs to dementia, you know there are certain moments which are inevitable.  The moment she or he can’t lived at home any longer;  the moment when any meaningful conversation ceases; the moment she or he doesn’t recognise you; the moment when engagement, any engagement, is merely fleeting.

We’ve reached and passed all those moments with Mum and this week, it feels like we’ve turned another corner. Mum isn’t well at the moment – and I’m not talking about dementia here. Her appetite, so healthy until the last few weeks, seems to have disappeared. In an hour and a half this morning, she ate one small square of toast. She will still drink her coffee but as the day unfolds, persuading her to drink anything becomes a challenge too.

Up to about a month ago, I could always raise a smile from her when I arrived. Today, she looked up briefly and looked down again straight away. I stayed with her for more than an hour and there were some shared moments, mostly musical. When Doris Day whose Que Sera Sera seems increasingly appropriate, sang the question:

“Will we have rainbows day after day?”

Mum, head down, eyes closed, piped up:

“I hope not.”

She’s tired, and I don’t mean sleepy though she spends a lot of time asleep these days. No, Mum seems tired of this whole dementia thing. I think she’s had enough. I hate thinking that, I hate writing it but I’m sure it’s true. Mum has been living with a dementia diagnosis for seven years and she was probably dealing with the onset for at least a couple of years before that.

So, she’s had enough. I said as much to Mum’s GP when he called to see her. His empathy suggested he agrees though she remains, appetite-apart, in pretty robust health. Should that change, there might be another moment soon – the moment when it’s suggested that she goes into hospital but we’ve pre-empted that. Mum will stay in the care home, with familiar smiling faces and her second family, the staff who love her and who’ve cared for her so well to this point.

There might not be too many ‘moments’ left but Mum’s well being has never been more important.

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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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