Tag Archives: life

Reflections

4 Dec

I keep a five year diary.

I started keeping a five year diary when I was a newly minted teenager.

The diary itself was made of bright pink plasticky stuff, pretending to be leather, and had a pretendie lock on it. I mean it did have a lock on it, a nice brass one, but the key was so shonky and so generic that I guess it was just there for decorative purposes. Anyway I wrote in that diary for five years, hardly missing a day, using all manner of codes to try to hide from prying eyes what I was really up to.

When I left home at the age of 18 I didn’t take my diary with me; and I didn’t start a new one. Probably for the best, all things considered. The diary never moved house with my parents some years later, so I guess Mum probably read it and despaired at how relatively boring my life had been. But who knows?

Anyway, I’d got out of the habit of recording a wee note at the end of each day, and reflecting on Things.

Until my Godson gave me a five year diary as a birthday present during Covid. He had noticed that I was churning out regular updates on socials on a whole raft of projects – my #100DayProject each year, or my #TemperatureBlanket. He recognised that my comfort zone included recording daily data on my life. Seems mad when I describe it like that. But it’s true, I enjoy that collection and recording, and ordering of data. I love seeing the big picture when you look at a series of recorded data points, the chance for reflection when you can see how life has (or hasn’t) changed. One of my current ambitions is to find interesting ways to visualise data using textiles, but that’s for another day. But if you’re even vaguely interested in this idea, then you might like Jordan Cunliffe’s book, Record, Map and Capture.

All those years, all that ink
Mum pressed her kissed fingers to her sister’s photograph

When I first started a daily diary again, I focused on facts, trying to capture all of what happened during the hours since I had woken up that morning. I soon realised that this is impossible and impractical to do just before you go to sleep, with only 5 short lines of text. And also, it doesn’t really capture the essence of the day does it?

And of course during that first year of a five year diary you are writing ‘blind’. Although I have a hinterland, the diary has none. Previous years just don’t exist, so there is no ‘Ooooh, look what we were doing a year ago’ moment. So, the reflection comes later. Much later.

At the end of this year I will have completed that five year diary, filling each page with a few thoughts once I’m in my pyjamas and settled for the night.

There have been times when it’s been a great comfort to see what I was doing 1, 2, 3 or 4 years ago. When Mum could no longer cope with phone calls, I could re-live earlier conversations. One evening I enjoyed reading that a year previously she had told me on the phone that she’d been making lots of jellies for King Haakon of Norway.

Back then, the year before had always been somehow not as bad as the year I was in… it’s easy to see now how the slow decline in Mum’s health (and her life) mirrored the decline in other parts of my life – my own health, some important relationships, work too has not always been going well. All of it is recorded, day by agonisingly slow day. So, there was always a sense of longing, of nostalgia for the past, even the near past, when things seemed better. Or if not exactly better, at least less bad.

But. And there is A But to this. I am (at last) beginning to look forward to a different, more hopeful, more enjoyable future ahead. I look back at previous entries, and am grateful that it genuinely feels like I am beyond the very worst of times for now.

They say ‘This Too Shall Pass’. And I think it has passed.

And, coincidentally, as we start 2026, I will literally start with a new blank page. I’ll pop the current diary in a box (quite possibly the box that already holds my mother’s five year diaries, because there is no room in the box that contains my grandmother’s). And I will start again, with a head and a heart full of memories…. and five more years ahead of me to fill with joy and love. And all the other bits.

When they lost Mum’s teeth
Mum would never bite into any food ever again

***

Thank you for reading this.

Mostly this blog has been about my relationship with Mum and her dementia. So if that might be your thing, then you could start here at Taking smock of the Situation. Or just dip in. After all, if I’ve learned anything this last few years it’s that chronology and time are less important than we might believe.

I’m not sure what direction the blog will go in now, it’s likely that it will be slivers of my life, curated for you.

Do get in touch if you have any questions or comments – I love to hear from you my lovely readers.

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Anticipation

22 Aug

I have swithered about whether or not to share this post, which I drafted in January, a week or so before Mum died. I’m glad to have captured that moment, now over 6 months ago, when I felt certain that Mum was in her final days with us. I was with her as she took her final breath, and it could not have been more peaceful, more ordinary in many ways. As ever, Mum showed us how it could be done.

You expect anticipation to lead to something good, something exciting, something that might enrich your soul. Otherwise you’d call it dread wouldn’t you?

I’ve written before of anticipatory grief. Of how each and every day for a long time I felt I was already grieving for the mother who was still physically there, but there were bits of her that no-one had access to any more, least of all Mum herself. But layered on top of this chronic grief was the anticipation of the big one, the true grief if you like, the grief of her last breath, and the finality of never seeing her again, never hearing her voice, never feeling the touch of her hand.

For over four years now I have dreaded that moment. And I still do.

But in some ways I am already there. I have not heard Mum’s voice for some while. Most recently there have been no words, no flicker of recognition that someone has entered her room, no response when I thank her for inviting me, introducing myself and telling her how lovely it is to see her again. And no reaction when I lean forward and kiss her forehead, or stroke her hair gently. But for months before this version of Mum appeared, the words have been few and far between, like the last leaves on a tree in a mild winter, ready to be blown away but just hanging in there. When she has tried to speak, her words were always jumbled, often slightly slurred; I yearned to hear her strong, confident voice again.

And Mum has not touched me for a long time. Over the last year she has curled herself up, almost foetus-like, but with her arms decidedly crossed over her chest and a duvet tucked up to her chin. There has been no hand available to hold.

And as she has become less communicative, less aware of my presence, I have visited her less. I recall a time, in the first months of us realising she had a dementia when I could not conceive of a day when I would be able to visit Mum, but would actively choose not to do it. In those early months, Covid restrictions were still in full force, and weeks would go by when I didn’t see her at all, while my brother was with her. And then we would swap and I’d spend weeks with her (and no-one else). Those weeks with her were hard, but being away from her was much harder for me. And yet there have been many of those days now. I can’t explain it, except to say that moving on is part of this grief and that I needed to give some attention to my life, to my new life in our new home with the Captain by my side. I needed to focus a bit more on my own self care, not just to fit it in where I could, but really to prioritise it.

We have had Christmasses without Mum now, so perhaps it will be easier than I imagine when she actually dies. Perhaps after the first emotional upheaval, I will manage to move on relatively quickly and to live a life which doesn’t always ask ‘what would Mum say?’. Perhaps.

But then we move on to anticipatory drugs. Another euphemism, and one that I feel very uncomfortable using. I first heard of anticipatory drugs a couple of years ago, on an occasion when I was called into the Nurse’s office at Mum’s care home and told that she had stopped eating. We discussed what this meant for a frail bed-bound woman in her 90s with relatively advanced dementia, and it was made clear to me that we were looking at a steady decline, over a period of possibly 2 or 3 weeks, followed by her death. Anticipatory Drugs could be ordered now, in anticipation of her needing them. It transpires that the Anticipatory Drugs are ones that would make Mum’s transition from life to not-life more peaceful, and pain free. A day later Mum started eating again. The drugs were not required on this occasion.

I never have really understood if they are called Anticipatory Drugs, because they are brought in, in anticipation of them being needed. Or of they are anticipating the end of life.

There have been two other occasions when we have been called in to be told that it seems like the end is near for Mum.

On each occasion, I have been overwhelmed with sadness, with gut-wrenching, heart-breaking grief. The idea that Mum might no longer exist in any form has always seemed impossible. And given that she keeps defying these near-death experiences, I have been proved right so far. It is impossible for there to be a world without Mum in it.

And then on Saturday, when I was with Mum the nurse on duty came in and shut the door behind her, to have a word with me. There was concern that Mum’s condition had changed – and that she was in some pain. The carers had noticed this when they were moving her body in the bed just before I visited. And yes, I had been concerned that she was moaning a bit, and that she would screw up her face into a grimace every so often. She did not seem the peaceful, serene Mum that I had been used to visiting. Her eyes were flickering and rolling to the back of her head, and she had a bit of a cough.

We had a long discussion. I felt strongly that if Mum was in pain, that we should do something to relieve it. Anticipatory drugs were discussed. Mum is very weak and frail, and is unable to communicate with us any more. I am her Power of Attorney for Welfare matters, and having talked to the nurse as Lois, the daughter, thinking about what I wanted for my mother, I came to the realisation that actually what I wanted was less important than being able to relay what I believe Mum would want.

This gave me utter clarity.

Mum has a high pain threshold, but this may have been short circuited with her dementia (we will never know). However, after years of living relatively pain free (and certainly over the last 2 years this has been the case) she would not wish to be in pain as she leaves this world. She also would not wish for her life to be prolonged in any way. She has had morphine in the past in hospital, and said she loved it – it gave her such good dreams. So I feel very confident that if Mum could communicate to the Nurse, she would say, “Give me the morphine. Give me the Anticipatory Drugs.”.

The plan was to call the out of hours GP to move this forward.

I got a call at around 7pm to say the out of hours GP had confirmed that Mum could get the anticipatory drugs, and that they would be delivered by the District Nurse some time during the night. I was reassured that if Mum needed them more urgently, they had an alternative way forward, but I didn’t ask the details.

I visited Mum the next afternoon, hoping that she would be less agitated. But Mum had had ‘a good night’ and had eaten all her porridge for breakfast so no drugs had been administered. They had arrived at 2.30am though, so were now available should Mum need them.

Mum was clearly still in some pain. Perhaps not constant, and not acute, but in some pain. It was distressing to see her like this; so I had another discussion with the nurse. She came and assessed mum, and agreed with me that Mum was in some pain, which could be relieved with morphine. She checked in with me several times to make sure this was what I wanted as Mum’s Power of Attorney, but also as Mum’s daughter – and that my brothers were also happy with this decision. We were all in agreement.

Mum was given the lowest dose of morphine, sub cutaneously. I popped back to see her a couple of hours later and she was sleeping so peacefully, she looked so blissful.

That was Sunday evening. After a good nights’ sleep Mum had rallied a bit – her pallor had changed again, looked slightly more healthy, and she had eaten 200g of porridge for breakfast. When I visited I was told that because she was eating, there was no more morphine for her. A GP arrived. Perhaps the pain over the weekend had been trapped wind? (I do not believe that this was the cause). After some discussion, and further assessment, it was clear that Mum was calm, and not displaying that she was in pain. So the GP did not recommend further use of the anticipatory drugs – but if Mum needed pain relief she should be given liquid paracetamol 3 times a day with her food. Mum does not always eat, and often stores her morsels of food in her cheeks, forgetting to swallow it down.

On Tuesday I visited again and found Mum mostly peaceful, but screwing up her face in a grimace every 3 or 4 minutes – in my opinion she was experiencing pain again. The same nurse listened to me (again) and agreed with me and also agreed what could and probably should be done, but while Mum is eating it seems unlikely that they will allow her to have the anticipatory drugs. Once morphine is administered, the appetite decreases. Mum is frail, she would not last long. But she would be pain free. And released from this life which she no longer enjoys, she just endures.

Tomorrow I will go and talk to the home again and try to establish what is going on, and why Mum is now expected to endure pain in what must surely be her final days or weeks of life.

***

Thank you for reading this.

Mostly I blog about my relationship with Mum and her dementia, so if that might be your thing, then you could start here at Taking smock of the Situation. Or just dip in. After all, if I’ve learned anything this last few years it’s that chronology and time are less important than we might believe.

Do get in touch if you have any questions or comments – I love to hear from you my lovely readers.

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Loss. But not lost.

8 Aug

I wrote this post back in March. For some reason I never posted it at the time. I have not edited it, but have added an extra paragraph at the end as a wee update.

Visiting Mum in February 2023

I’ve been thinking about loss a lot lately. I guess this isn’t much of a surprise to anyone.

Mum died 51 days ago, and I still feel her loss as though it were a large woollen jumper I put on each morning. It wraps me up and keeps me safe. It smells and feels familiar. Its softness fits my contours. It is light and some of the time I hardly notice I am wearing it. But occasionally it overwhelms me and feels like it is suffocating me.

But there have been other losses.

Sometime around 26th January I lost my house keys. It has been fairly common over the last year for me to temporarily lose my keys, but usually I find them in the bottom of a shopping bag, or in the drawer, or hanging up in the kitchen. On this occasion they were nowhere to be found. I was annoyed at myself for stupidly losing them, but honestly had other things that were more important at that point.

Mum died three days later. The keys didn’t show up.

This loss, which should have thrown me into panic, into a tizz, hardly touched me. Mostly I don’t need my set of house keys, as I’m either with The Captain (and his set of keys) or he is at home and we don’t need to lock the house up. In my head I tried to retrace my steps when I last used my keys – I thought I had them with me when I’d gone shopping, or perhaps that time I bought a coffee on the way to visit Mum?

A few weeks later I made enquiries at the few places I might have left my keys – they looked for me, but nothing had been handed in. Had I just dropped them in the street? Did I need house keys at all? I sort of felt like I probably did. But this loss indicated that perhaps they weren’t as important in my life as I had imagined.

The loss of my keys seemed to be part of a greater loss I’ve experienced over the last long year. I have lost some of my eyesight, aspects of my health and with these two, my independence. As I write this I realise it sounds more dramatic than it is – I am still an independent woman, but I am no longer able to drive and somehow the ability to get in a car and drive off somewhere on my own has always represented independence to me. Perhaps I have to look again at what independence really looks like?

Mostly I have just absorbed this loss. I railed against it initially, was desperately unhappy and, looking back, was really quite incapacitated by it. I felt let down by the medical profession – there has been little research for my condition, and as a result there are few options. The medication I need to take (to prevent further sight loss) adds new symptoms on top of the recognised symptoms of my condition.

And this brings me back to the loss of Mum. Except that I haven’t really lost her. Here she is, in this big woollen jumper, always with me. I see her everyday. She is in the camellia flowers, which have appeared so early in the Spring. She is in every meal that I make, but most especially in big pots of soup. She is under the stairs, in those ancient jars of salt petre and bottles of glycerine. She is in the jade elephant. And there she is in the birds twittering around the birdfeeder. She is in my wedding ring, given to her by Dad nearly 64 years ago when they married. She is here all around me, in the view of the pond which is so full of activity at this time of year – swans, ducks, coots, moorhens. She is with me when I sow seeds, with such hope for their growth. She is in every breath I take, for I am made from her.

One day a month or two later The Captain walked into my office saying, ‘Guess what I found?’. My housekeys had re-appeared, after a long holiday in the car way under the passenger seat. I have put them in my bag, but have not used them once since. There are some things which you believe are essential to life itself, and it’s only when they are gone that you realise they’re not. Mum was though.

Mum, my cousin Max and I finding something very funny a few years ago

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Another perspective

5 Dec

On 17 November 2021 I wrote:

There are other ways of looking at things.

Ah, three years on from first writing this, I feel I have learned of so many other perspectives, in so many aspects of my life!

In June this year we got married. We’d been together for 16 or 17 years, we’re actually not entirely sure which, and I think that’s a good thing. It’s not that we don’t care, or that we don’t want to celebrate that we are together, but it’s a recognition that we should appreciate one another every day, not just because it coincides with the anniversary of the date we first met one another.

New recipe instructions were required

We married for practical reasons. I had never really seen the point of getting married, hadn’t been someone who had hankered after a glorious wedding and being a fabulous bride (or a bridezilla). And I think that suited The Captain just fine. He’d been married before and was perhaps wary of repeats. Or perhaps we both just never felt we needed to.

Mum had always wanted us to marry. She knew The Captain was a keeper from early on, and occasionally would needle me to consider marrying him. She felt it would ‘protect me’. I, of course, thought I knew better, and was confident that I could look after myself. I felt slightly indignant and defiant of the idea that I should require protection.

But the years rolled on, and life threw curve balls at us. And we came to realise that marriage might be a sensible thing after all. The driver for me was as un-romantic as it gets – I wanted to be sure that if I were on life support, or incapacitated in such a way that someone else was being asked to make medical decisions about me, then I wanted that person to be The Captain. And the simplest route to getting that might be marriage.

I was immensely proud of the bouquet and buttonholes that I made from bits and pieces in Mum’s garden and from the hedgerow beyond.

So I hadn’t expected anything to be different on the day after I transitioned from bidie-in to wee wifey.

But there are other ways of looking at things. And looking at our life from the perspective of being married, we are much closer, more confident, somehow more of a couple. And that seems a bizarre thing to write, as I hadn’t thought we were lacking in any of those areas before. Perhaps the wedding was also a recognition that we had positively and definitely chosen one another, rather than that sense that trying to start again with someone else would just be too much effort.

So, I raise a glass to all who have chosen a path in life that suits them, that gives them the perspective they want. Keep the joy folks.

***

Thank you for reading this.

Mostly I blog about my relationship with Mum and her dementia, so if that might be your thing, then you could start here at Taking smock of the Situation. Or just dip in. After all, if I’ve learned anything this last few years it’s that chronology and time are less important than we might believe.

Do get in touch if you have any questions or comments – I love to hear from you my lovely readers.

And FINALLY… it’s not too late to make the delicious Light Christmas Cake. Really it’s a cake for all seasons. You can find the recipe here.

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Feeling my way

15 Nov

On 16 November 2021 I wrote:

Slow but steady progress. At this stage I’m still sort of feeling my way and working out how I’ll do each element of the design.

On Sunday when I talked to Mum she hadn’t realised it was Remembrance Sunday, she said they hadn’t done anything at the home (but she’s not the most reliable witness). When I asked if she was wearing a poppy she just didn’t understand why I was asking her, she couldn’t connect poppies to Remembrance Day.

Dementia is so strange, how it robs people of their memories, of their ability to communicate, of whole parts of their lives, their personalities.

But at another level there is still so much of Mum there, and so much to love. So I try to accept her and love her for who she is each day, and remind her that she is loved, so very loved.

I can’t focus just now on who she was, what is gone already. There will be plenty time for that.

It’s odd coming back to this, three years later; and many months after I last wrote about Mum and her dementia.

So, three years on, Mum has all but disappeared. Certainly it is now almost impossible to see the woman who brought up three kids, who was Provost of our town, who campaigned tirelessly for this local community, who could draw anything, who welcomed so many people into her life, who was so interested in other people, and who could inspire a room full of people when she spoke. Mum used to lay a wreath on behalf of the town council at the War Memorial. And now….

These days, sometimes she wakes when I visit her, and she occasionally smiles at whatever I am knitting, and very, very occasionally says a few words. She may or may not know who I am, but I think she is aware that I am someone who loves her. And if not, then I tell her. I tell her over and over again. For she will forget as soon as I say a thing, that has been her life for several years now.

It was the Remembrance Day Service on Sunday, at the War Memorial which is just a few yards from our home. The day was drizzly but not too cold. So, having thought about wearing Mum’s Karakul fur coat (which she used to wear only to the Remembrance Day Parade and to funerals in the cold winter) I decided against it. I’m guessing that damp Karakul would not be the nicest thing, though perhaps our dogs would love it. I have wondered if perhaps I should dispose of the coat… but since it probably belonged to my great grandmother so no animals died for it in my lifetime, I think perhaps it would be ok to wear it, as Mum did, at funeral and Remembrance Day services when it is so cold you can’t feel your fingers.

At the end of the service on Sunday, when the wreaths had all been laid, we’d had Flowers of the Forest on the bagpipes, and the Last Post on the trumpet; the colours had been raised again, the Minister spoke, ending with ‘WE WILL REMEMBER THEM’. At that precise moment we all heard a ‘whup whup whup’ noise above us, coming up from the High Street. It was one of the swans, giving us a perfectly timed fly past, Gatehouse-style.

They shall grow not old, as we that are left grow old: 

Age shall not weary them, nor the years condemn. 

We will remember them.

***

Thank you for reading this.

Mostly I blog about my relationship with Mum and her dementia, so if that might be your thing, then you could start here at Taking smock of the Situation. Or just dip in. After all, if I’ve learned anything this last few years it’s that chronology and time are less important than we might believe.

Do get in touch if you have any questions or comments – I love to hear from you my lovely readers.

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