Reasons various

23 Feb

On day 11 of the 100 Day Challenge, I didn’t post anything. On Day 12, I posted the following:

Didn’t get to this yesterday for reasons various…

I wasn’t keeping a diary at the time, and so I don’t know exactly what the “reasons various” were. But in the lead up to this, several days previously, I had sent a message saying the following:

Mum was up and about again last night… at 10pm I noticed her on the camera and went across. She wanted to check her diary to see what was happening (gas boiler man coming this morning, so she probably had a slight memory of this being planned). She then peeped round the door into the sitting room at 1.30 and then withdrew again (probably going for a pee). She’s just opened the curtains now so I think will be tired and more confused through the day today.

It was just before 7am, so that was me up and at it for the day.

The following evening I wrote:

Not much change really to be honest. J is here too at the moment which is certainly much more manage-able for both of us and I think better for Mum too. She’s been enjoying having us read excerpts of her memoirs to her this evening. I’m hoping this tired her out.

And then, this gap of a few days… and on the morning of the 12th, when I posted about “reasons various”, the following:

Mum’s probably much worse than when you last saw her. It’s hard to notice how much deterioration when you’re just dealing with it every day. She wanders at night, though not every night, and needs gentle persuasion and physical help to get back to bed. She honestly can do little for herself unaided now, though still has a healthy appetite and manages to eat. Her short term memory has gone. She is still though very much herself and is coping amazingly, such an inspiration.

Reading this back, I can immediately recall how exhausted we were, how our complete focus was on what was best for Mum. But we were also really aware that in reality we didn’t really know what was best for her. We had been trying to put additional support in place, to help her get dressed in the morning and getting her ready for bed in the evening. But what she really needed was someone with her 24 hours, partly to try to keep her safe, and to help her when she needed to go to the loo, but also because she clearly benefited from companionship.

We had set up a small camera in the sitting room, to help us keep an eye on her when we weren’t there in the room with her. I was initially nervous about this, worrying that she might think we were spying, but no, she was very certain that she could turn it on and off (she couldn’t) and she rather liked it; she understood that it was for her benefit, so we could come when she needed us.

What the camera had shown us though, was that when Mum was having her ‘quiet time’ after lunch with her feet up (this was on the advice of the superb District Nurses, to try to reduce the water retention in her legs) in reality she was bobbing back and forth, up and down, grabbing her walking frame and beetling off out of sight (probably to the loo again) every 10 minutes or so. So, by the 12th June, I was spending more and more time with her (and helping her in the loo), and less and less productive time on my laptop for work.

The restrictions as a result of the Covid pandemic had allowed us all to work from home. But I was now finding that juggling work and caring responsibilities was nigh on impossible. I felt like I was failing at both things. I had considered several times if I should see my doctor and ask for a fit note, to be signed off work for a few weeks.

The emotional toll of trying to keep Mum safe, and always knowing we were probably not doing quite enough had worn us out. I planned to head home for a week in a few days’ time. I hated to admit it, but I needed a break, needed ‘respite’.

But, we were approaching midsummer in Galloway, and Mum’s garden was a solace – the honeysuckle was billowing over the gable end of the house and everything was lush and green. I yearned to go down to the sea, I knew it would restore me. But there were never any hours in the day when this was possible. The sea was there though, waiting for me.

Dementia is confusing.. for the person with dementia and those around them. My wish is that nobody with dementia should go through it alone. Click on this link to help make this true. Thank you.

And if you want to start at the beginning of this series of posts, head here, to Taking Smock of the Situation, where it all began.

Starting anew again

21 Feb

10 June 2021, day 10 of the 100 Day Project embroidering Mum’s well-worn smock I posted the following words:

I’m sitting here quietly over a cup of coffee with Mum, while I organise the next bit of embroidery.

This is a picture she did last summer before she stopped drawing or painting. She took part in the 100 days project, doing a painting a day .. but just stopped at about day 83. And could not be persuaded to do any more. With hindsight I wonder if her brain was already deteriorating?

It was around Christmas when she said a few things that sent me down the rabbit hole researching early stages of dementia. The Alzheimer Scotland website was hugely helpful. Nowadays Mum won’t draw any more, but she enjoys looking at her pictures from last year. I’ll enjoy transforming them into embroidery.

That all seems so long ago now, and I find it hard to really recall what a vibrant and creative person Mum was before dementia. Everyone’s dementia is different, but from what I know, it seems like it has developed quite quickly with Mum. It felt as though she was desperately trying to keep it at bay for a while (we’ll never actually know how long, or know how she was during that long year of 2020 when we were hardly able to spend any time with her), and during this period it was exhausting for her. She would sleep a lot in the afternoons, and went to bed really early at night. But then, once she accepted that she had dementia, perhaps as soon as she had the diagnosis, it was like the flood gates opened and she changed almost daily. Each day felt like a huge loss to me, like bits of Mum were disappearing. It took me many months to get to a point where each day I could accept her for who she was that day, without being sad about what was already gone, and what else we might lose.

Back in early 2021 when I first was minding her, we established a daily routine which started with me peeping out the window to see when she drew back the sitting room curtains to indicate she was up and awake, and finished with her heading off to bed at about 9pm. I spent most of my working hours across the road, at my laptop, and all mealtimes with her, with lunch being The Main Meal of the Day. Initially Mum could still manage making lunch (though often it involved something I had batch cooked at the weekend. But by early February, it was clear she was struggling with this seemingly simple task she had done every day of her life for about 70 years. She has a Rayburn, which can be such a forgiving way to cook – but it was more often that I’d come through for lunch to find a pan of VERY salty over cooked cabbage, and the fish pie (or whatever) still in the fridge.

Making lunch, even if it is just heating up pre-prepared dishes, consists of several discrete tasks, such as:

  • put plates in the bottom oven to warm up
  • take the pie (or whatever) out of the fridge and put it in the top of the top oven where it’s hottest
  • get the cabbage out of the fridge
  • cut the cabbage up
  • find a pan
  • put some water in the pan
  • put a pinch of salt into the pan
  • put the cut up cabbage into the pan
  • put the pan on the hot plate on the Rayburn
  • replace the rest of the cabbage in the fridge
  • keep an eye on the cabbage so it doesn’t overcook.

It became clear that Mum could only manage one task at a time. And once that task was complete, there was no guarantee that the next task would happen. There was a disconnect in pulling things together, and an inability to work through a number of connected tasks to make up a whole. I just wanted to protect her and look after her, so I told her not to worry, and gradually it was accepted that I would make lunch each day. We tried some other options. I desperately wanted Mum still to have some agency, so she could feel like she was still managing and independent – we discussed lunch plans over breakfast and I wrote a simple list for her; I would nip through at coffee time to ‘check in’ and see how things were going. But essentially, Mum no longer had the capacity to prepare lunch independently.

She LOVED her food still though. It was one of the few pleasures she could still enjoy in life, and so I strived to make her meals as delicious and nutritious as possible. I developed techniques that allowed me to maximise my time at work, and still produce a tasty two (or sometimes three) course meal each lunch time. I considered writing a cookbook for carers, or at least sharing my tips on this blog. But none of that happened. Life happened. And that was fine.

Do get in touch if you have anything to share, about getting old, about caring for others, about embroidery. Really about anything.

And I’d be very grateful if you would consider making a donation to Alzheimer Scotland. It might be the lifeline that someone else needs when they are trying to make sense of a world that seems to have developed a glitch.

Biscuits That Make You Go Ooooh!

14 Feb

On the 9th day of my 100 day embroidery project I wrote the following:

With a few online internal meetings today, I’ve been able to make good progress with embellishing the smock so here I give you my pair of swooping swallows.

Not bad, eh?

My brother and I are looking after Mum together now, after months and months of each of us doing it on our own and then going home for a bit while the other minds Mum. It’s only now, sharing our caring, that I realise how much of the strain is down to the isolation.

When not working for my employer, or caring for Mum, or stitching I can generally be found cooking.. and our new favourite are my Biscuits That Make You Go Ooooh. They are sesame and saffron shortbread. Mum loves them. So today’s bonus is a dish of toasted sesame seeds, and then Those Biscuits.

I’ll spare you the picture of the toasted sesame seeds, because you really don’t need to see them.

But those biscuits! They really do make people go ooooh! I think it’s the surprise of the sesame-ness of them. And then that beguiling hint of saffron. Anyway, they are super-tasty. And even now, seven months later, and with Mum’s memory so patchy, she will delight in saying ooooh if she opens the biscuit tin and finds these biscuits.

I guess you want the recipe don’t you? They are Saffron and Sesame Biscuits by Sabrina Ghayour, from her Simply book, which you really should buy because there are so many VERY good recipes in it. And these are ridiculously simple.

I’ve been reflecting a lot recently on how it was last year, what I was up to a year ago, what I didn’t know then that we know now. January 2021 was without doubt the hardest, cruellest month. The weather didn’t help, but that was not the problem. I knew I would be minding Mum on my own for a while, as we’d gone back into lockdown and really we shouldn’t be mixing households, or swapping them about more than was necessary. I had thought a lot about self care, and had put various strategies in place, but even so, it was lonely and (with hindsight) anxiety-making being with Mum, and realising that she probably had the early stages of dementia.

But don’t feel sorry for me, please. We had lovely times together, and I am forever grateful and aware of the privilege of being able to temporarily move my life and live in the house next door to her, in the town where I grew up, and to feel supported by a community (despite us all being locked down and apart from one another) and being nurtured by the Galloway countryside.

I got support from many sources, including from from Alzheimer Scotland, who provide a 24 hour helpline. Please help them keep that helpline free for anyone who needs it. You can donate here: Alzheimer Scotland, and I can tell you that you are an absolute star for supporting all of us who have feared the worst when faced with the prospect of someone we love having dementia.

London pigeons

10 Feb

I originally posted this on 8 June 2021, on the 8th day of my 100 day embroidery project.

Again slow progress on this wee swallow today… I did a wee bit before breakfast and then some more while sitting with Mum at teatime. Today was the first time she really showed much interest in this since I started actually stitching. She clearly thinks it’s slightly mad. Which it is. I’m ok with that.

Your bonus pic today is one of Mum with her wee sister Astri. And some pigeons. If we’re lucky, Astri will tell us where this is.

We established that it was most probably Trafalgar Square in London. And those are London pigeons. In the last few years one of Mum’s pleasures was feeding the birds on her patio. She had a pair of cooing collared doves that came to visit her regularly, and also a pair of wood pigeons, which are infinitely more glamorous than your London pigeons. And back when we were small, we were adopted by a pigeon one summer. It was a homing pigeon that decided our home was better than wherever it was meant to be … I remember it perching on top of the budgie cage, and poo-ing onto the budgies, which amused me at the time. We named it Cuckoo Not Our Pigeon. And one day it wasn’t our pigeon any more, it flew off to wherever it called home.

Did I mention that one of Mum’s superpowers is catching birds?

One of my early memories is of her with a wee blackbird in her hand (look away now if you don’t want to read about its demise)…. I think it was hurt, possibly by the cat. Anyway, Mum turned her back to us, and with a quick scrick of its neck, the bird was dead. I was hugely impressed with this ability at the time.

But generally Mum didn’t kill birds she caught, or not in my lifetime (though one of the legends of her childhood was that she killed a sparrow with her bow and arrow, and cooked it over a fire).

She caught birds that came down the chimney and got stuck in the woodburner, birds that fluttered against the inside of the conservatory windows, birds that flew into rooms and couldn’t find a way out again….

You shall go to the ball!

6 Feb

So, I realise I am posting progress slightly out of order… you’ve already seen day 7 and here, now, is Day 6. It’s really not much different is it?

On the day, I recorded the following:

Gentle stitching restored me this afternoon after another non stop day.

As I was stitching I was thinking how frightening it must be not to be able to remember what’s happened that day. But I also wished that each evening I could wipe most of that day’s memories… this is not how I want to remember Mum.

So, here you have a picture of Mum in her younger days, off to some ball or a party. Or possibly a wedding. I’ll never know

7 months on from writing that, I don’t recall the precise nature of that day – but I do remember having a real long-lasting sadness that my own memories of Mum as she had been, an independent, assertive, funny, kind, clever woman, those memories were beginning to be overwhelmed by my current experience of her. I wasn’t just sad, I was also angry. But perhaps I was angry at all manner of things, not just that others might have their memories of Mum intact, while I saw her at her most vulnerable, in ways she would have found humiliating in her previous existence.

I also recognise that it is an enormous privilege to care for a parent, to see them in all their vulnerability, and just to still have them in your life at this grand old age.

On many occasions over the last year I have reflected how much Mum continues to teach us, even when she’s not aware that this is what she is doing. Without a doubt she has taught me to appreciate the small things, the details, the delights close to home.

A couple of years ago, when Mum could no longer get out and about, when her world felt (to me) diminished, she continued to find joy in what was immediately around her: she fed the birds every day (and when she forgot, the wood pigeon would peck on her window and demand food); she tended her garden, and when she could no longer manage it, she enjoyed having a gardener; she loved propagating new plants, and regularly rotated the plant on the Chinese carved chest (a lovely sunny spot) so it was something beautiful and in flower. My social media tells me that a year ago her clivia was flowering – I have a feeling that this was grown from a seed that she brought back from South Africa in her pocket some years ago.

Finally, if you can, please consider making a small donation to my fundraiser for Alzheimer Scotland. I will be enormously grateful. It won’t stop Mum’s dementia progressing, and it won’t stop someone else from finding out that someone they love has dementia – but your donation will mean that no-one needs go through this on their own. Because it’s lonely, and frightening – and that’s just for those who love someone with dementia. I still cannot imagine how distressing and exhausting it must be for Mum.

Thank you.

Posies of flowers

5 Feb

This stitching is from the 7th day of my 100 days embroidery project. It was early June, and this is what I wrote when I posted this pic.

This wee swallow hasn’t changed much since yesterday, but that’s part of the point of this project I think. It just takes its own time and gives me time to unwind, to think, to lose myself in the slow stitching.

Mum was brought the most beautiful bouquet of flowers this morning by a friend who knows she has dementia. Mum loved the flowers but, somewhat amusingly, immediately sent her out to forage in the garden for more blooms to augment them.

Mum was so good at always having a wee posy of flowers from the garden in the house. After I’d left home, whenever I came back to stay there was always always a mini vase of flowers on my bedside table. I’ve only just remembered this… so tomorrow I must remember to put a mini vase of flowers on her bedside table.

Looking through and finding all these pictures of flowers from Mum’s garden reminds me of a moment a few weeks earlier. In addition to Mum’s dementia, she had also become increasingly frail. She required a walking frame to get around – she had one with 4 wheels which she called her Dancing Partner, and this helped her get about the house safely. But she hardly ever ventured outside any more. One evening I mentioned that as I had walked across to her house that evening, I had been overwhelmed by the smell of the honeysuckle which grew over the gable of her house, by her bedroom window. She missed such pleasures.

I took her secateurs and picked a small bunch of sweet sweet honeysuckle. When I came back in and placed the flowers in her hand, she seemed not to know what to do with them… so I held them up to her face so she could breathe in their smell. Her face immediately relaxed, and broke into the widest of smiles. That perfect, pure joy!

It felt that there were relatively few pleasures left in Mum’s life – she no longer painted, or drew; she couldn’t garden any more; she struggled to read; and because of Covid she had spent the last 18 months in social isolation. But she still loved her food, and she adored flowers from her garden. I can’t tell you how good it felt to find something that genuinely gave Mum joy at that point. I think, perhaps, we were all seeking some joy.

Knowing that someone you love has dementia, or might have dementia, is frightening. You fear the worst. And actually you don’t really know how it will impact your lives, though you are pretty sure that it won’t be good.

There is help and advice out there, including from Alzheimer Scotland, who provide a 24 hour helpline. Please help them keep that helpline free for anyone who needs it. You can donate here: Alzheimer Scotland, and I can tell you that you are an absolute star for supporting all of us who have feared the worst when faced with the prospect of someone we love having dementia.

A superb 70s hat

3 Feb

And here we are at Day 5 of 100 of the embroidery project. This is what I reflected on at the time:

I haven’t got much stitching done today… I really haven’t stopped long enough to focus on it all day.

But since we never get just one swallow here is the second one. And I’ve learned so much by doing the first one, so I’m tweaking how I do this one. Well no two birds are exactly alike are they?

As a wee bonus, you get mum and dad dressed up to go to some fancy shmancy do. We’ll never know now what it was, but I hope wherever they were they appreciated that hat. It was sort of autumnal colours, in the way that many things were in the 70s. Or was that just in our house?

One of the first really obvious symptom of mum’s dementia was that she never knew what time of day it was, even if she had checked a few minutes before (and she did check with us frequently). At most meals she thought it must be breakfast time – I guess if you lose your short term memory, and have no recollection of the rest of the day you probably think there has been no day yet, so if it’s a mealtime, it must be breakfast!

We bought her a dementia clock, which helped a bit, except that she was determined to position it on a bookshelf in the passage way between her bedroom and the rest of the house, a place she only walked through either when she was going for a pee in the night, or when she got up in the morning. So, for the rest of the day she still didn’t know what day of the week it was, or whether it was morning, noon or night. We bought a second clock, and she used it a bit more. She was definitely aware of this being an issue, and later, when she had an appointment with the doctor and she knew they were going to ask her some memory questions, she deliberately checked the clock just before he called, so she would know the day of the week.

But the thing that initially helped the most, was a simple pencil and paper solution. We wrote the day of the week, and the mealtime on pieces of paper and positioned them at her place at the dining room table. She would sit down at her chair, which had always been her chair, with her back to the Rayburn and she would read the label, usually with some delight. She still has not lost her appetite and has always enjoyed good food.

I say initially.

The final picture in this series (below) wasn’t needed at first. Mum would go to bed (generally at about 8pm), and then wouldn’t get up again till breakfast time, or if she did, it was only for a pee and then back to bed. But in the late Spring, she started waking at night, and believing it was day time. She always seemed her most vulnerable during these nocturnal moments. Somehow it felt as though she didn’t have the energy or the capacity to pretend that she was ok, and she was often tearful and upset, realising that something was wrong, usually believing that she was a stupid old woman. I had hoped that on these occasions the ‘This is Bedtime’ message might convince her that it was still the middle of the night (that and the fact that it was pitch dark outside and I was in my pyjamas)… but she suspected that someone (possibly the pixies) had come in and changed the labels just to confuse her. I so wish I had never joked about the pixies putting them out so they were always right!

Thank you to all who have already donated to Alzheimer Scotland, you rock my world! And if you want to donate again, or for the first time, then today is a good day to do just that. Thank you all, I REALLY appreciate your support.

Hope. And love in a jar.

1 Feb

Snowdrops are my absolute best and favourite flower. I love how they battle through the cold, and poke their delicate wee heads up, often through snow, and wind and rain. But always COLD. I love their soft gentle colours, their crushable petals, their amazing scent, and how they look just perfect in a wee vase with an ivy leaf.

I love how the represent hope. Hope that Spring will come, that life goes on.

But most of all I love how, for me, they represent so much more. They mean love, and kindness, and knowing I am loved.

I left home at 18, and moved to London, where I lived for over 20 years. Every year I received a small cardboard box, containing scrunched up newspapers (for padding). Carefully, carefully I would open that box and then gently remove the newspaper… to reveal a bunch of snowdrops with a couple of ivy leaves (a plastic bag over the flowers and another secured tightly around the stems, which were wrapped in wet newspaper). The scent of snowdrops still takes me back to that homesick longing to be where they grow, under Mum’s magnolia tree in her ‘winter garden’.

Today I have picked snowdrops from Mum’s winter garden and will take them down to her this afternoon. I hope she recognises the love they represent.

Fly little swallow, fly

31 Jan

On day 4 of my 100 days embroidery project I wrote the following:

Fly little swallow, fly.

I love the slow, methodical process of embroidery. I mean it’s really just paint by numbers for Elizabethan ladies isn’t it?

Anyway, my first swallow on this project is complete. I might mix it up a bit and do something else next instead of another swallow, what do you think?

I’m actually feeling quite proud of this. When I first thought of embellishing this smock, mum suggested swallows around the yoke. I loved the idea, and decided i would do it without once considering whether or not i actually could do it. And then I kept thinking what other motifs I could add… and in my head it all grew like topsy. And it was only then, as I was about to start that I remembered I haven’t embroidered anything for about 30 years. And I was never very good. I was overwhelmed.

But.. I’m also determined to create something remarkable, inspired by Mum and by memories.

Her short term memories slip away before they have time to lodge in her brain these days. But she still has stories of long ago. And oh such stories!

Dementia is confusing.. for the person with dementia and those around them. My wish is that nobody with dementia should go through it alone. Click on this link to make this true. Please.

The architect

30 Jan
Probably taken in the late 1940s

Thursday marked 7 years since Dad died. I hadn’t remembered the date, perhaps to my shame. But I realise I don’t lodge death dates in my brain, except for Great Uncle Walter, who died on my birthday – I remember the phone ringing and me expecting it to be someone wishing me happy birthday! The excitement! And then the accompanying sadness, and a sense of guilt that I felt so annoyed that my birthday was ruined by this news. But Uncle Walter had been a grandfather figure to me and my siblings throughout our childhood, when our own grandparents were living in South Africa. Perhaps I will write more on him another day…

Dad was born in 1920, in Berlin. He came to the UK in 1936 to finish school somewhere he would be more able to flourish. The Nazi youth were already being pretty brutal by all accounts. Dad studied architecture, through the war, was interned in Canada for a year and on his return made Scotland his home.

In the early 1950s he had a whirlwind romance with Betty, who was travelling around the coastline of Britain on a white horse … Dad was entranced and a few weeks after they first met, they married in Fortwilliam under the moonlight. I should say that I knew nothing of this story until a few months ago when my sister, his daughter from that first marriage, came to visit.

Coming up to Christmas a few years after his divorce, Dad went to the local gift shop to buy Christmas cards to send to his family in Germany. He had a large family, but only bought one card. The next day he returned and bought another card. And again the next.

Mum was working in that gift shop, and Dad just wanted an excuse to keep returning. They married in March – I’ve never discovered if it was 3 months, or 15 months after they first met.

I inherited the ability to water divine from Dad
Dad designed and had built a ‘wee house’ at the bottom of our garden. I LOVED that wee house – here I am enjoying it with my two brothers.

Anyway, Dad was an architect. And when I come to Galloway, I see him almost everywhere I look – his thumbprint is on so many buildings here, his legacy is all around me. But he left so much more than physical buildings – he left friends who adored him and family (near and far) who loved him. And when it comes to it, what more do we need to leave behind than love?

Dad with his big sister and his Dad
Dad with his two sisters
Dad, a year before he died, at the opening of an exhibition of his student work (yes, his STUDENT work, created more than 70 years earlier)
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