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

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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.

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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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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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