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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.

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.

A Big Adventure

24 Jan

Mum was born in Scotland but before she was a year old she had travelled south with her mother and big sister to South Africa where her father had bought a fruit farm.

She lived there until she was 8 and WW2 broke out… and they made the journey back north to Scotland again. And at the end of the war they took that journey south again.

This pattern continued, back and forth from Scotland to South Africa pretty much until she married dad. I grew up hearing stories of the whaling ships she traveled on and it all sounded like such A Big Adventure.

No wonder we love the swallows that make that same journey every year.

The above was written on the Day Three of the 100 Days. I knew at the time that I should keep a diary, to remind me later what happened when, and how I was or wasn’t coping. But I didn’t. I just couldn’t commit anything to paper. It was easier to stab the fabric, to process things as I slowly stitched.

But, thanks to modern technology, I can look back at the messages I was sending my brother, and recall some of what was going on.

On this day, I discover that we were working out a new rota, given that we could now spend time together in the same house. The plan was for one of us to have a week on our own at Mum’s, followed by a handover week when both of us were there together, then a week with the other one going solo. I drew up the rota for the next few weeks, and took a picture and sent it to James, not knowing that none of it would actually happen in that carefully planned way.

I also noted that morning that there had been no nocturnal wanderings overnight. We were living in the house next door to Mum and had set up a motion sensitive camera to capture movement in the sitting room (so alerting us to her wandering around the house at night, rather than just getting up and going for a pee). At this point we noted that she was ‘one night on, one night off’ in the nocturnal wandering stakes. I was worn out, I’m sure Mum was too.

The District Nurse showed up mid-morning, to re-dress the bandage on Mum’s leg. She had fallen some weeks earlier, and had skinned her shin. Mum’s skin is thinner than tissue paper and also takes forever to heal. Another factor was the water retention in her legs, so the wound was literally seeping, soaking the bandage. The advice was to take advantage of gravity and for Mum to keep her feet up (we had tried water retention tablets earlier in the year, but Mum did NOT enjoy how they made her need to go to the loo very suddenly). So, each afternoon Mum would have ‘quiet time’ in her comfy chair with her feet up, and a blanket wrapped over her legs to keep her warm and cosy. Mum’s quiet time also gave me time to focus on work for an hour or two.

If you want to read more about the 100 Days Project, and to know more about why I’m embroidering a smock, go to Taking Smock of the Situation.

Thank you to all who have already donated to my associated fundraiser for Alzheimer Scotland, you are absolute stars! And if you feel moved to donate again, or for the first time, then today is a good day to do just that. Thank you all, you already support me in so many ways, so I REALLY appreciate you digging deep and supporting others when you make a donation.

Mum, with her big sister Jennifer

Swooping swallows

23 Jan

It’s only 7 months since I first started embroidering Mum’s smock, and recording my progress each day with wee stories about our lives, her life. It feels like several lifetimes ago, and it’s interesting to re-live that time, and to recall how far we had already come in our journey with Mum’s dementia.

I am someone who likes to know facts, who feels better if I feel I have some knowledge and if I can put a name to things. So, having seen that Mum wasn’t quite her usual self when I started minding her in January 2021, I researched ‘early stages of dementia’. If this had been a tick box exercise, Mum seemed to tick all the boxes. A typical list of symptoms is here (this one from The Alzheimer’s Society)

  • Memory problems
  • Difficulties in thinking things through and planning
  • Language and communication, for instance struggling to find the right word
  • Poor orientation (this is perhaps the one that I never identified with Mum)
  • Visual-perceptual difficulties
  • Changes in mood or emotion

Soon afterwards I spoke to her wonderful GP, who was professional kindness itself and discussed what, if anything, we should do about this. The GP confirmed that this indeed did sound like it might be the early stages of dementia, and also confirmed that we didn’t need to do anything, or not straight away. I enquired what the advantages of a diagnosis might be, and established that they ‘might be’ easier access to some forms of support. I’m not sure I discovered precisely what that support would be, but I also wasn’t sure what further support we needed or whether anything would actually be supportive.

This was to become the constant quest – ‘what support do we need? what else would help at this stage?’

The GP had established that Mum was not in physical danger, that she was not so vulnerable that she could no longer live on her own, and had also asked after me and how I was coping, which kindness immediately set off my tears.

I cry most easily at times when I am trying to be brave and cope with stuff and people show me kindness.

A few weeks after this conversation with the GP I cried when the local postie (who I only really know to wave at through the window when he delivers the post at Mum’s) was kind, and understood when I explained that Mum may have dementia, and that really the junkmail wasn’t a good thing for her.

With hindsight, so much had already happened by early June, but so much more would happen in the coming weeks. But we will come to that.

So, on Day Two on the #100daysproject I wrote this:

Today wasn’t as chaotic and so all was a bit calmer. And I had a long meeting online at work where I could listen and participate and stab the smock at the same time.

Swallows have swooped in and around our lives every summer for as long as I can remember. They nest in the eaves of Mum’s car port, and they dive bomb us every time we come out the back door.

Embroidering this swallow feels a bit like stabbing skin for a tattoo. The back yoke of the smock will have several swooping swallows.

Spoiler alert: the back yoke only has two swallows and I think it’s unlikely I’ll add any more – if only because in general I only ever see one or two swallows swooping at a time.

I’d be forever grateful if you felt inspired to donate to Alzheimer Scotland, it doesn’t have to be much because I know that every single penny will make a difference. They have a 24 hour helpline to ensure that no-one in Scotland need go through dementia alone. This coming week, could you make a donation instead of paying for a cup of coffee (or some other small treat) one day?

If you want to start at the beginning of this story, go to Taking Smock of the Situation.

Emotional investment

20 Jan

Was I the only one who hadn’t realised quite what an emotional investment this project is? I mean what was I thinking of? Embroidering memories, while Mum’s are slipping away like water through her fingers.

I wrote this on 1st June 2021 the first morning of embroidering the smock:

This morning started with a phone call at 5am. Mum had cut her arm and needed help. Just as well I knew where she kept her stash of more dressings! She had no recollection of how it had happened.

At 5.30 we were all sorted and I was very much awake but not ready to start work. So what’s a girl to do but start embroidering? The light was perfect and the steady stitching slowed me down and somehow gave me the focus to face the day. I didn’t get another chance to stab the smock till after supper time, when the light was less good.

I’ll tell you about why swallows another time. There’s lots of time. Ish.

The swallow was designed by my nephew Max, who enthusiastically threw himself into this project. That week when I started embroidering the smock was a few days after the first weekend we had ‘opened up’ from a long-term and pretty severe lockdown in Scotland. Max and his Dad (my brother) had come to stay in Galloway, and it was the first time I had been there caring for Mum when others were also around. The sense of relief, of beginning to understand quite how hard this had been on our own, was palpable. I was no longer alone (not that I ever was, I was with Mum, but I think you know what I mean).

Initially I felt quite overwhelmed by the enormity of this project. I’d embroidered way back years ago, when I was still a child, so I wasn’t entirely new to the idea of using threads to paint pictures on fabric. I remember I embroidered brightly coloured flowers up one leg of a pair of jeans (in the 70s, obviously), but don’t recall embroidering anything else, or anything that I would today be proud of.

Not knowing exactly how or where to start, I had done some research and had learned how I might transfer a design to the fabric (using a stabiliser that would then magically dissolve in water when I’d finished stabbing). And then I just started stabbing at the fabric, using what felt like the right thread. I’d maybe do those swallows differently now, but not much… and I realise that this project was never about the embroidery, it’s about the journey as they say, it’s about the memories, the slow pace of the stitching, the joy of creating something that will hold onto this time we’ve had.

By the end of Day One I had made some small progress. I had also consulted with The Embroidery Book, published in 1949 and given to me by my grandmother on my 11th birthday (it felt like an old book then, but with all these years behind me now, I realise it wasn’t THAT old).

If you want to start at the beginning of this story, go to Taking Smock of the Situation.

Again, if you are moved to support Alzheimer Scotland, who work to ensure that no-one has to cope with dementia alone, please just clickety click here, and you will seamlessly be taken to my fundraising page. I’m currently 75% towards my target of £600, and I’d be beyond grateful if your kindness nudged me a bit closer to reaching that goal. Thank you.

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