Tag Archives: Mum Has Dementia

Creativity

18 May

On 25 August 2021 I wrote more…

This wee dude is nearly done and although I have one more swallow to stitch I’m already thinking about the next design. It’s going to be a cheeky wee quick one. And I’m already excited about it.

It’s been interesting today, just letting my mind wander. I was thinking how creative all my family are, and how I don’t consider myself creative at all. At least not musically or visually… but I know I am with food. Give me some random ingredients and I can create you a tasty meal. Today I made pita bread (there it is, puffing up in the pizza oven) and brought a selection of salads and cold meats and cheese and boiled eggs to the table so we filled our pitas then filled our faces. The pita recipe is from Ripe Figs, the most beautiful celebration of food, migration and a world without borders by Yasmin Khan.

Mum is an artist. She can pick up a pencil, a pen, a brush and draw whatever is in front of her. Well she could. The optician confirmed she has macular degeneration which explains why she’s being saying “I’m blind” for over a year. And I think this combined with her dementia means we will never see her draw again. I hope she doesn’t miss drawing, but I think she maybe she does, when she remembers it was a talent she had.

Mum never did draw again. And these days she sleeps most of the hours of each day, so I know she never will.

Thankfully I don’t think she ever did regret that she could no longer draw; she seemed not to know that she ever had that ability. So, while I feel sad at that loss, Mum never did.

We had hung one of her pen and ink drawings in her room in the care home – it’s a charming picture of her lush green veg boxes, overflowing with abundance, and surrounded by small creatures – swallows, a snail, a wee mouse, a spider.

In late August 2022 I was sitting with Mum as I embroidered – the design was adapted from a pen and ink drawing I had found in one of her sketchbooks, of silver birch trees in the Autumn. I showed Mum and let her know how much I loved stitching her drawings, reminding her what a talented artist she was. She did her funny wee scowl, looking puzzled, and with disbelief asked “Am I?”.

I talked some more about the ease with which she could draw anything in front of her.

She had no recollection of this aspect of her life at all. And what surprised me more, was that she had no curiosity about it, and no disappointment that she could no longer do it. It was as if I was talking to her about someone she really didn’t care for and certainly wasn’t interested in.

She hmmmphed at me, as an indication that she’d like to move on to other topics.

By this time Mum had lost all her curiosity in the world around her. And with that loss of curiosity, comes a loss of interest in almost anything. This was so very different to the Mum I had known for most of my life, who showed interest in everything.

I don’t say this in any critical way at all, or even with sadness, though I’d be lying if I pretended I wasn’t grieving for Mum. It is just a statement of how I perceived Mum, and how our relationship was at that time. In some ways visits with her became easier for me (I know, I know, it shouldn’t be all about me, but my experience is all that I can write about with any confidence). When she was losing her ability to communicate so well, there were visits when she would be distressed but was unable to articulate why. This distress was rare, what was more common was that we struggled after a while to communicate about anything much at all – Mum would tire, and fail to find the words she was looking for. Previously, when I was living with her I could finish every sentence for her when she lost a word – we existed as a team together. After several months in the care home this was not possible. I sometimes could not fathom what she was trying to tell me at all. So, more recently, when she lost the inclination to talk much at all, I took my embroidery or knitting with me and after a short chat I would tell her that I was going to get on with my knitting (or whatever) and that I’d just sit quiet as a mouse beside her. I often told her she looked tired, and she agreed that she was … essentially I gave her permission to snooze.

Perhaps we all need to be given permission to snooze some days.

***

Trying to care for Mum as she developed dementia nearly broke me on a number of occasions. Gentle meditative stitching the Fisherman’s Smock probably saved me, giving me a focus and forcing me to carve out time when I could let everything go and just concentrate on those tiny stitches. I would really appreciate it if you could make a donation towards Alzheimer Scotland. They’re doing stuff that makes living with this more bearable for so many people. Thank you, thank you, a thousand thank yous.

And if you want to read more about my relationship with Mum and her dementia, 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.

Tags: , , ,

How are you?

11 May

On 25 August 2021 I wrote

This is fun! I’m sitting in the sun, mindlessly stitching and feeling my whole self begin to relax.

This wee swallow is beginning to take shape but I need to go and make lunch so you’ll see the rest of him later. Yes, since there have been so many days with no updates, I decided you can have double updates some days. Watch this space later.

I have just re-read something else I wrote at this time, illustrating how much I curated my life on social media to suit the world I wanted you to believe I live in.

My friend Juliet had asked me that simple question, “How are you?”

And I don’t sugar the pill with Juliet, I am able to be entirely open and honest with her. I said, “I’m not sure really. I say everything is ok, because it’s not awful. And I’m sitting outside sipping coffee and eating madeleines. And embroidering swallows. So it is ok by most standards.” And, honestly, by most standards it was.

But then I went on to say, “I’m sad. OK but sad”

And when Juliet responded with “I think sad is very acceptable”

I knew this to be true, “It is. Indeed. And I have madeleines”

So Juliet added, “And love”

And because it was on WhatsApp and sometimes you get out of synch, I then replied with, “Orange and cardamom flavoured if you want to know” and “An abundance of it”

I hope that wherever you are and whatever is going on in your life that you, too, have an abundance of love. And also that you have people around you who you can say how it really is when they ask how you are.

***

You might want to dip into other posts, or understand how we got to this point? This series of posts starts here, with Taking Smock of the Situation, an embroidery project I started after I realised Mum might have dementia. There I was, embroidering her old fisherman’s smock with symbols relating to her life; as her memories were being thrown around like so many pieces of jigsaw in a big box.

Tags: , , ,

The memory of madeleines

9 May

On 24 August 2021 I wrote

It’s glorious weather here today. And I’m on holiday from work this week, so after a lazy start and a walk with the dogs I made some madeleines. Oh my good god they are delicious!

And this afternoon I pootled a bit, then had a coffee break on the Terrace and did a bit of stabbing.

I called Mum late afternoon and talked about flowers for a minute or two. That was fine.

Now might be the time to state that I have never read any Proust. And it seems likely that I probably never will if I’m honest (and I like being honest).

But I had a desire to understand about the whole madeleines Proust thing (which is no doubt impossible to fully understand if I resort to Wikipedia instead of actually going to the primary source). Anyway, I now know that in A la Recherche du Temps Perdu, or In Search of Lost Time if you want the English translation, the madeleines are used to demonstrate involuntary memory, and how it differs from the partial memory of voluntary memory.

Basically, when the character in the book tastes a madeleine dipped in tea it brings forth a forgotten memory of his aunt eating madeleines dipped in tea on a Sunday morning. And I guess a whole lot of other associated stuff with that memory.

I get this. I had this involuntary memory experience a couple of years when I saw Mum spooning the froth off the top of her cup of hot chocolate in a café. I realised I do this whenever I get a frothy drink. I also find myself sometimes involuntarily ordering a black coffee with a wee jug of cold milk on the side, because this is exactly what Dad used to order, and sometimes his words just come out before I have thought about the fact that I prefer a flat white. I wonder if Dad might have liked a flat white, if they had been more readily available in his lifetime?

Anyway, memories.

Memories of memories.

And shadows of memories, ghosts of memories.

I’m interested in what we remember, and what we lose. What we notice at the time, and what we hold in our memory banks so we can revisit them later. I hope I always remember the woodpecker that had breakfast at the birdfeeder just 2 feet from my desk this morning. Will it come back to me, unbidden, if I see a woodpecker again when I am old? Will I always remember that moment it first landed on the birdfeeder and I held my breath, lest I disturb it? And how when it had its fill, it flew back up to the telegraph pole and clung on, in classic woodpecker pose, but this time not so close, so I couldn’t see the detail of each and every feather.

Also, I do love the photograph (above) of the ghosts of madeleines, created by the dusting of icing sugar.

***

You might want to dip into other posts, or understand how we got to this point? This series of posts starts here, with Taking Smock of the Situation, an embroidery project I started after I realised Mum might have dementia. There I was, embroidering her old fisherman’s smock with symbols relating to her life; as her memories were being thrown around like so many pieces of jigsaw in a big box.

Tags: , , , ,

A diagnosis

17 Apr

On 22 August 2021 I wrote

I visited Mum again this morning. And took her more homemade biscuits. She really does love her biscuits.

I told her (again) that her big sister has moved into a home. Mum seemed to have a flicker of understanding and then told me (again) that she didn’t think she would do that.

Mum had her 90th birthday earlier this year. We were still in lockdown and my brother was with her. No-one else, as we weren’t allowed more people from different households indoors at home. It really was not the greatest way to celebrate all those years. Three weeks later she was diagnosed with mixed dementia. I was surprised and yet not at all surprised by the diagnosis… I pretty much knew she had the early stages of dementia so it was a relief to have it confirmed. But the assessment was done over the phone and as I sat next to mum listening to the call, I felt she was doing so well and worried there might be no diagnosis. But at the end of the call the Dr told mum his diagnosis. The phone was passed to me and he confirmed to me mixed dementia: Alzheimer’s and vascular dementia.

I hadn’t expected this immediate diagnosis, but knew that I was not now going back to my ‘office’ and working straight away. Instead I reassured mum that dementia was just a word, she was still my same mum and I loved her and would keep her safe.

The next morning mum acknowledged she had a touch of the alzheimer’s.. and then seemed to forget about it. Occasionally now I remind her. But mostly I remind her that she is loved, that she is the best mum.

Your bonus today is the River Fleet, and this view feels as familiar to me as the back of my hand so I’m grateful I get to walk across the bridge and see the peaty brown water each time I go to visit mum.

I took a picture of Mum as she was sitting quietly in the sunshine the day before she was diagnosed. Two days after her diagnosis, she was again sitting in the sunshine, and I took another picture of her. These two pictures feel so different to me. In the first she seems carefree, and in the second, there is such a sadness in her far away look. She looks so lost.

And she was, she was beginning to be lost. To everyone, even herself.

***

I started writing this series of posts here, with Taking Smock of the Situation, an embroidery project I started after I realised Mum might have dementia. There I was, embroidering her old fisherman’s smock with symbols relating to her life; while her memories were slipping away, like me at a party I don’t want to be at.

Before that I blogged about whatever I was cooking and you can find my recipes here.

Tags: , , ,

Seeing is believing

13 Apr

22 August 2021 I wrote

Slow progress.

Same with Mum really. An optician came to the home on Friday and I accompanied Mum to her appointment.

It was just a week since I’d seen her.. and when the carer told her I was there she didn’t think they were telling her the truth (this is a recurring theme). When she saw me she kept asking if really I was Loïs, she didn’t believe it was really me. This was not expressed with any joy, just sorrow that perhaps it was all a con.

The appointment with the optician was hard for me – mum was distressed and tearful and wouldn’t let go of my hands. But shortly afterwards she had forgotten it all. She was still mistrusting and unhappy but pleased that I would come back the next day with biscuits.

I did. And she was much less distraught… I sat and crocheted as we chatted. I’ll drop in and see her this morning before heading back up the road.. I don’t know if she gets much lasting comfort from my visits (other than the full biscuit tin) but I sense she gets some little comfort while I am there.

As I re-read this post I feel that ‘slow progress’ is one of the recurring themes of the last two and a half years.

In ‘Today’ Mary Oliver writes this line:

I hardly move though really I am travelling a terrific distance

And although none of us has moved much in the last two and a half years, we have all travelled such great distances. And this last month Mum has moved less than ever, mostly sleeping, occasionally waking and smiling. But she is surely travelling a terrific distance, and soon will travel to a place unknown. Her slow pace has helped us to adjust to this new destination. She travels with such grace.

***

I started writing this series of posts here, with Taking Smock of the Situation, an embroidery project I started after I realised Mum might have dementia. There I was, embroidering her old fisherman’s smock with symbols relating to her life; while her memories were slipping away, like me at a party I don’t want to be at.

Before that I blogged about whatever I was cooking and you can find my recipes here.

Tags: , , ,

Newlands and Norwegians

10 Apr

On 19 August 2021, I wrote a second post, below:

More clothes pegs on a line. They maybe don’t look much like clothes pegs but they are, and I kinda like them. They might make more sense once the swallows are there too.

The bonus picture today is of the Duncan siblings, taken on the steps of Newlands during WW2. They all feature in Mum’s memoirs in different ways, but the biggest character is Newlands itself.. it was given to Norwegians during the war, to use as a hospital, while Gran lived in the Garden Cottage with her daughters, Jen and Mum. But more on that another day.

The Duncan siblings: Arthur, Loïs (my Grandmother), Walter, Lorna and John
Newlands as a hospital, during the war

Mum was proud of her connections to Norway, first developed on her long journey back to Scotland at the start of WW11. On the ship were only a few passengers, and it seems that they were mostly Norwegian whalers, heading back to Europe to fight. Our Grandmother had a particular and long-lasting friendship with one, Kris Thoresen also known as Big Dog.

And Mum remembered with great fondness the young recuperating Norwegian soldiers who climbed trees with her on the Newlands Estate during the war. When she jumped into a large water tank and cut her foot (almost in half by all accounts!) on a broken jam jar at the bottom of the tank, she was carried up to the Big House which the Norwegians had turned into a hospital during the War, and there the kind Norwegian surgeons sewed her foot back together and the nurses bandaged it up.

In 2017 Mum contributed to a local project, gathering information about the connections between Dumfries and Norway from WW11 and beyond. The project is now all compiled here: Our Norwegian Story. There is oodles of information on the site about the many and varied ways that the Norwegians and the Doonhamers engaged with one another, including a section on Newlands (click through on the locations, and then on Newlands).

There were Royal visits to Newlands, by King Haakon in the 1940s and then King Olav in the 60s. As Mum’s mind started unravelling she became slightly obsessed with King Haakon, and with the plaque he unveiled at Newlands – she would suggest that we went for a visit to see the plaque, because no-one else would know about it any more, only her. There were days I would visit and she would tell me that he was coming to tea the next day, or that he had been there earlier, and now had thrown all his rubbish into that pile ‘there’ (pointing at the corner of the bed, where she regularly claimed there was a rubbish dump).

One of Mum’s other obsessions (for a while) was biscuits. She LOVED to have biscuits in her tin. And as fast as I could bake, and fill up that tin, they would all be eaten again.

And then I found a recipe for King Haakon biscuits! The joy! Of course I made a batch and took them to Mum, who declared that they had probably been made specially by the cook at Newlands, and that cook got the recipe from the King. I took that as praise indeed for my biscuits.

The biscuit recipe actually came from the WI Biscuit book, which is an absolute must for anyone who vaguely likes making biscuits.

And now I have a batch of the biscuit dough in the fridge, ready to be cut into slices and baked, so soon the kitchen will smell deliciously of sweet baking.

Do let me know if you make King Haakon biscuits. Or if you want the recipe for the Cardamom Cookies, which are sensationally good. One of these days I’ll get back to writing up more recipes again.

***

I started writing this series of posts here, with Taking Smock of the Situation, an embroidery project I started after I realised Mum might have dementia. There I was, embroidering her old fisherman’s smock with symbols relating to her life; while her memories were slipping away, like me at a party I don’t want to be at.

Before that I blogged about whatever I was cooking and you can find my recipes here.

Tags: , , , , , ,

Letter to Mum

5 Apr

Back in early December I was lucky enough to spend 3 days at Melville Castle on a writing retreat, with fellow Bold Scribes. Bold is a remarkable organisation, which has helped me not only survive the last couple of years, but to begin to flourish in new ways.

Without Bold there might not be regular(ish) blog posts; and there certainly wouldn’t have been such a positive attitude to Mum’s ability to continue to live her best life, when by most measures her life was diminishing.

Our final assignment on this retreat was to write a letter to someone, about dementia. My initial thought was to write to my nephew, telling him that I want him to read my memoirs to me when I have dementia. But it just wasn’t working for me. The words just faltered and stuck in the pen, refusing to go down on to the page.

So instead I wrote to Mum.

I wrote to her as she was when she was my age. You can read the letter below.

Dear Mum

This is me, your daughter Loïs, but I am now 57 years old… and I have travelled back in time to talk to 57 year old you.

Don’t ask how, or why, just bear with me.

I know at this stage this seems almost impossible to believe, but shortly after your 90th birthday you will be diagnosed with mixed dementia (Alzheimers and vascular, if you’re interested). And I am writing to tell you that it is going to be ok. You will be alright.

As James and I have said to you so many times this last year – you don’t need to worry, we are here to do your worrying for you these days. I know, I know, 57 year old you doesn’t do much worrying.. but 90 year old you found lots to worry about. I think it was that you could no longer always make sense of what was going on in the world.

I don’t know how much you know about dementia, perhaps not much more than I did last year before your diagnosis.

So what are the key things to tell you? There is so much to say, but actually I wonder how much of it really matters? What I have learned through your dementia is that all that really matters in the end is love. And you know, Mum, that although we haven’t always voiced it, that you are so very loved by all of us.

I’m going to assume that my two big fears about you having ‘a touch of Alzheimers’ as you put it the day after your diagnosis are the same as your two fears. Because I know how much we think alike.

My greatest fear was that you would no longer recognise me. Me! Your favourite daughter! And yes, I know that I am your only daughter, but it’s become one of our wee jokes – I call you my favourite Mum, and you call me your favourite daughter. Yup, I know, it’s not really that funny, but when you’re 90 it will become more amusing, trust me on this. And let’s put that fear to one side – you continue to know me, and if you don’t know who I am, I now know that you will always at least understand that I am someone who loves you and keeps you safe.

And my other fear is that you will change temperament, that you will no longer maintain your composure, that you will lose that ability you have to be firm but kind, so very kind, and always always fair. What if your dementia alters your personality, such that you are constantly angry, that you shout and swear and hit out at people, either physically or verbally? I don’t know how I would cope with that.

Perhaps you are worrying about what you will lose… what bits of you will be lost to all of us (your easy conversation, your stories, your memories, your ability to draw with such ease, how you can make a feast for a table full of family from what appears to be frugal scraps in the fridge). And yes, all of that will go. But none of that is really you. It’s just stuff you do. You are still there.

And I can confirm that 91 year old you with relatively advanced dementia is the concentrated essence of who you are.

Never have you been more loved.

But one thing – look after your teeth.

All my love

Loïs, your favourite daughter

***

You can read more about my relationship with Mum and her dementia starting here, with Taking Smock of the Situation, an embroidery project I started after I realised Mum might have dementia. There I was, embroidering her old fisherman’s smock with symbols relating to her life; while her memories were slipping away, like me at a party I don’t want to be at.

Tags: ,

Slow and steady

3 Apr

On 19 August 2021, I wrote:

Slow but steady progress.

A washing line of swallows. And clothes pegs.

This morning I awoke wondering about the timeline of this writing. It feels as though I am writing in several different timezones all at once:

  • the time when I originally posted the picture (currently August 2021)
  • sometimes decades earlier, reflecting on aspects of Mum’s life
  • and now.

Though really, I haven’t been saying much about now have I?

And I wonder if that is what is going on? Am I writing about what was happening 19 months ago, in order to hold back time? Or too avoid looking too closely at what is going on right now? Because A Lot is going on. And has been (in various forms) for quite some time now. Perhaps for all those 19 months.

More recently, over Christmas it became clear that we were getting rapidly to the point when we would need to sell her house to release the equity to cover the eye-watering weekly fees for her ongoing care. On another occasion I will write more about this, for now all you need to know is that we made the decision to put our home on the market, so we could buy Mum’s house (if the figures added up and we would be able to do so).

The figures do and so we’ve been making progress. But rather like the washing line of swallows 19 months ago, it has been slow and steady.

And then in early March things changed. Mum’s health deteriorated significantly, and she stopped eating. A few days later she started to eat tiny amounts again, but most of her time is spent sleeping and it feels like she won’t be with us for much longer. If she had not started taking in some food again, we were told she may only have 2 or 3 weeks left with us.

So the anticipatory grief rollercoaster throws us around another loop. After spending several days sitting with her each afternoon as she slept, and I worked, or wrote, or knitted … and several evenings talking with my brother, we both felt that it was time for us to come back to our homes again. Mum is calm and peaceful; she is serene and when she wakes and sees that we are there she gives us the biggest smile. Her hair has been stroked more than ever before in her life, her hands smell sweetly of the lavender hand cream we rub into them. She smiles with delight when the carers come and care for her.

The first few days of this new normal were unbearable. Life without Mum has always felt impossible. But we know it’s not impossible. We just haven’t experienced it yet. We will learn how to live with it, like we learned so many other things, And in a strange way, it feels as though Mum is, yet again, showing us how to get through this transition – with grace and love.

***

You can read more about my relationship with Mum and her dementia starting here, with Taking Smock of the Situation, an embroidery project I started when I realised Mum might have dementia. There I was, embroidering her old fisherman’s smock with symbols relating to her life; while her memories were slipping away, like me at a party I don’t want to be at.

Tags: , ,

Sisters

31 Mar

On 18 August 2021, I posted the following:

See these lovely wee girls with their whole amazing lives ahead of them?

They are my mum and her big sister, Jennifer.

Most of their lives are behind them now, but they are still full of so much love.

Jennifer has chosen to move into a care home this week and I send all my love to her and her family as she settles in to this new environment.

In recent months Mum has talked a lot about her early childhood when it was just her and Jennifer. They were a wee team, never apart. And although they are physically very much part these days, with Jen in Ireland and Mum in Scotland… somehow it isn’t surprising that they both go into homes within weeks of one another. Still doing things together, as they always did.

And here we are 19 months later and they are both still in care homes, being cared for with utmost professionalism and kindness.

But they are so very different. Mum has advanced dementia, and even communication is becoming more difficult for her these days. When I visit her she will generally sleep for most of the time, so I always remember to take my knitting or some writing so I can sit quietly beside her as she sleeps.

My brother and I visited Jen at the end of last month and she continues to be sharp and challenging, and bright, and interested in everyone and everything. It was an absolute joy to spend some time with her.

As a bonus, I share some more pictures of Jan and Alix from the early 1930s, coloured using palette.fm

***

You can read more about my relationship with Mum and her dementia starting here, with Taking Smock of the Situation, an embroidery project I started after I realised Mum might have dementia. There I was, embroidering her old fisherman’s smock with symbols relating to her life; while her memories were slipping away, like me at a party I don’t want to be at.

Tags: , ,

I can see!

23 Mar

On 17 August 2021, I posted:

I got better lighting! I can see what I’m doing!

This is the beginning of a washing line with a bright plastic clothes peg. After the big pink cosmos flower this feels so small and delicate. And fun.

You have two other bits of embroidery in your bonus pics today… the first is some embroidery I did when I was about 12 years old (when my eyesight was considerably better) for my grandmother who I was named after. It’s the corner of a wee cotton hankie… one of around 100 hankies I found in mum’s chest of drawers. The 2nd is a monogrammed towel, which must have been a wedding present for my grandparents, making it over 100 years old.

The gift of sight is a thing you don’t appreciate until it starts diminishing.

When we were young, one of the closest of our aged relatives was our Uncle Walter. And he was blind. But I never quite understood the impact of him losing his sight because he seemed to manage to get about ok, and was a much-loved uncle who told the best stories and was the life and soul of any room he was in.

Though there was the fabled story of when he had walked through the plate glass door from the kitchen to the wash house, without opening the door. He hadn’t seen that it was shut. And glass. And he had just kept walking. If he had stopped on impact, it was believed a shard of glass might have come down on the back of his neck and killed him. Hurrah for keeping going when things go wrong!

I realise I don’t know why he was blind, what had happened to his sight? In my childlike way, I just assumed it was something that happened to some old people so I never enquired.

Mum’s eyes have been a trouble to her for years. Some 20 or 30 years ago she suffered from Bell’s Palsy, where one side of the face is weakened, apparently paralysed. Her mouth drooped on that side, and she was unable to close her eye. Mum was given some drugs, and eyedrops and lubricants, and a patch to put over her eye. I think it was taped up at night for a wee while too. Then the doctors took the decision to sew her eyelid shut until the palsy disappeared, to protect the eye.

When they cut her eyelid open again, they cut in just the wrong place – and forever more Mum’s eyelashes on her right eye grew inwards, scratching her eyeball, instead of outwards, protecting it. She would attend the eye clinic a the hospital in Dumfries every 6 weeks for what she called her ‘eye torture’.

Having escorted Mum to the eye clinic at hospital on many occasions, I appreciate having my eyesight, and also not having scratchy painful eyeballs. Poor Mum, she never ever complained about it, but it must have been horrid.

***

You can read more about my relationship with Mum and her dementia starting here, with Taking Smock of the Situation, an embroidery project I started after I realised Mum might have dementia. There I was, embroidering her old fisherman’s smock with symbols relating to her life; while her memories were slipping away, like me at a party I don’t want to be at.

Tags: , , ,

← Older Entries
Newer Entries →