Remember what it was like back in the early summer of 2020.
We were all locked down. People who lived on their own were mostly entirely on their own.
We live 100 miles away from Mum and we didn’t see her from one month to the next, except on a few occasions when she had a hospital appointment, and we drove down and picked her up, took her to hospital, and then dropped her off back home again, before driving back up the empty road to our own home. They were long and stressful days, but they included the joy of seeing Mum, even if it was for a short time.
On one of these occasions I talked to Mum about the 100 Days Project, and she was keen to take part. So she did, each day picking a thing in her world (generally her outside world, as she was uncomfortable at people seeing what she had in the house) and painting it.
In other times, there would be an exhibition of participants’ work some months after the 100 days was over, but not 2020. Or 2021, when I responded to Mum’s diagnosis of dementia by embroidering her Fisherman’s Smock.
But the exhibition of 2022 work is on at Edinburgh College of Art now, and alongside, they have created online galleries to showcase work from 2020 and 2021. I have never been more proud, than seeing Mum’s final paintings in this online gallery.
Please take a look; this series of paintings feels like the most perfect love letter to Mum’s garden, in the final year when she was able to enjoy it.
It’s been a tough couple of days, with little stitching time. Somehow I held the tears back till I was about to drive back home again… not sure when they’ll end, so you may need to wait awhile for the new design. (You’re going to love it).
Some years before Mum’s dementia entered our lives, but after Dad had died, Mum called a Family Meeting, with her three children – myself and my two brothers. She wanted to tell us together what her wishes were for her remaining years, including details of what was in her Will, and her desire that we focus on quality of life, not length of it – she has always been very much in the DNR camp, but it was, I think, good for us all to hear this together so we all have clarity about ‘what Mum would want’ as she became unable to express it herself, or even to work out what the question was that she was being asked.
There is tradition on Mum’s side of our family to identify what things we might get on someone’s death, so I have a small side table that has a label with Mum’s name on it in the drawer, written in her GranBunnie’s handwriting.. There are other bits of furniture still at Mum’s with those same labels, others with initials written in chalk on the underside of the drawer by my Grandmother.
At the Family Meeting Mum wanted to go around the house with us, marking up who would get what. It was all written in The Book. This process of giving a future life to her treasures I think gave her pleasure, a satisfaction knowing that we would continue to love some objects that felt almost like an extension of her.
But, after Mum had moved out of the family home we just left everything as it was. The jars of various teas sat by the kettle (Assam in the morning, “David’s Special Tea” at 4 o’clock, chamomile or peppermint for visitors); the bottles of oils and vinegars and wee jars of favourite herbs and spices were by the Rayburn; the TV remote controls remained on the side table next to where she would sit; her favourite blanket draped over that same chair… in every room it still looked as though she might come back any moment.
We had been busy, of course. But also we had known that clearing such stuff would open the dam, and would unleash a torrent of tears. We felt we had time, we didn’t need to do it yet.
The only thing we did was to remove most of the things that had our names attached to them.
So, on 8 August 2021, I was driving back up to my own house, with what is now known as Gordon’s Big Cock in the back of the car. This is a Tibetan sculpture of a cockerel, encrusted in wee cabochons of coral and turquoise. It’s a mad thing, but a thing with such history, having been given to Mum by her much-loved Uncle Walter who spent time in Tibet in the 1930s and 40s. Paintings were gone from the walls – all my life The Owl had hung above the fireplace, in the childhood home I was born in, and in this house Mum and Dad moved to after I had left home. The collection of Indian paintings had grown when Uncle Walter died and Mum inherited more of them. The display cabinet had always sparkled with bits of silver, each item with a story to tell, a part of our family history. All gone from the cabinets now, all that was left were the green goblets (bought by Mum at a house sale); the blue porcelain serving dish that Gran used to pile high with wee sandwiches for tea; a set of odd porcelain ladles that none of us cared for; some pottery animal sculptures that mum had created. We had decided to remove the things that ‘would break us’ if the house was burgled or went on fire. We also knew that now was not the time to remove everything. So there were compromises.
But on that journey back, all my heart knew was that this was the beginning of saying goodbye to Mum forever. The comfortable home, filled with stories and memories and beauty was being dismantled; some of her treasures would live on and be loved in other homes, but not everything, there was an inevitability that many of these things that we held so dear would also be gone from our lives. And on the journey home, this was all too much for me to bear.
Some days I wonder if I feel so strongly about the association of the Things with their Stories and our Memories because Mum has dementia, and her stories have been washed away with her own memories? Or have I always had this strong connection, and desire to imbue everything with meaning, with connection? It makes it much harder to let things go when it feels like you are letting go of those connections too; but with practice, a lot of practice, I am getting better at it.
***
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; while her memories were slipping away, like me at a party I don’t want to be at.
If you want a bit of cooking inspiration then you could check out my recipes here. Not sure there’s anything much that would make it to a Carer’s CookBook… but if you’re interested I will add some ideas for meals if you are caring for someone you love (and you both love good food!)
I’ve not been doing a lot of stitching but enough to make progress. And to keep me well. You did realise that this is about my own self care as much as anything else didn’t you?
Yesterday evening was beautifully warm and the outdoor light is the best for embroidery. It’s also good for crochet and sometimes that’s what I want/need to do. I flit from project to project. Don’t judge me.
When mum’s health deteriorated one of her few remaining pleasures was good food. Her appetite did not diminish and she repeatedly told us that if we put it in front of her she would eat it. She also took pride in the fact she had taught her 3 children to cook so well. And now she benefited from our good cooking.
But one of the earliest symptoms of her dementia was a loss of connection with time. She never could tell what time of day it was. We bought her a dementia clock which helped for a while. But it was an old school method which worked best – putting a note next to her place at the table to tell her the rough time of day. Some days we joked that the fairies put out the notes for mum; other days she no longer believed the note, preferring to believe that it was ALWAYS breakfast time. Time for toast!
I lived next door to her, worked from home as much as I could, and made sure she had a good meal at lunchtime. Casseroles went back and forth from one house to the other. I developed a repertoire of meals that could be prepped early in the day and then cooked quickly and eaten in a lunch hour. I thought of writing a cookbook for carers. I still think of it.
We realised at some point that Mum needed some tasks. She’d stopped doing things of her own volition and was struggling with mobility. She spent much of her day just sitting (or so we thought) and was bored. I recalled her telling us as children that only boring people got bored. And Mum has never been boring.
Tasks for Mum included taking the meat off a roast chicken carcass and cutting up fruit to make a fruit salad.
As it happens I have only just this week got around to getting rid of Mum’s dementia clocks – she had two, and they have both gone to new homes via EBay. We unplugged them both in July 2021, when Mum went into a home after considering taking one to her new home, but deciding against it as she seemed less interested in what hour of the day it was, and certainly had lost all of the anxiety around this issue – perhaps because she now knew that she didn’t have to take responsibility for things, and that she could trust others to keep her to her ‘regime’.
Re-reading this post reminds me of when we were home, struggling to look after Mum, to keep her safe, and to reassure her that she was ok, that she was safe and loved and we would do the worrying for her.
Throughout our lives, Mum had been someone who would get things done. Not just little things, or a few things; one of her skills was making this look easy, this talent she had for getting things done, for bringing people together to make things happen. Like campaigning for bypasses for all the towns along the A75; or for the local school to be saved from closure.
So, it goes without saying that making a fruit salad was something she just did without even noticing she had done it, so instinctive and simple was it to her.
But in Spring 2021, it was different. Mum desperately wanted to feel useful, and as though she still could do some things. Making a fruit salad seemed like a relatively benign task that might be possible. Surely her muscle memory would kick in?
There are more steps in making a fruit salad than you might think, and Mum was only capable of one simple step at a time. She sat at her usual place at the table and we placed in front of her a board, for chopping; and on her left were various fruit; on her right the bowl in which to put the chopped fruit.
Mum was unable to navigate peeling fruit, her fingers were no longer nimble and actually she couldn’t understand what she was trying to do with them, what movement was required to make the thing happen that I was talking about, but which she didn’t really understand. I showed her, but she then accepted my offer to do that bit.
So I peeled apples and peaches, and cut then into large wedges and placed them on the board so she could cut them. I feared looking away for a moment while she had that sharp knife in her hand. More and more we were swapping roles in our lives – she was my child and I was looking after her.
***
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; meanwhile her memories were slipping away, like me at a party I don’t want to be at.
Or if you feel like a bit of cooking inspiration then you could check out my recipes here. Not sure there’s anything much that would make it to a Carer’s CookBook… but if you’re interested I will add some ideas for meals if you are caring for someone you love (and you both love good food!)
On 2 August 2021 I uploaded to my Insta twice in one day, to make up for the lack of posting in previous weeks. Here is what I wrote later that day:
An evening stitching on the terrace in the sunshine is definitely what I needed today. Each day I feel as though I’m sucking more oxygen of life back into my lungs again. I look up and see the world continues to turn as it always does.
Meanwhile, on the phone this evening Mum tells me something that’s annoyed her about her brother, Simon. He’s pretending to have been an engineer evidently. And then he comes and sits there on the edge of her bed after he got all that money from the co-op.
Mum has no brothers. I suspect Simon is another resident in the home, but possibly not. Possibly someone from years ago. Possibly an amalgam of real people and things she’s heard on the radio, or overheard in a conversation. Possibly all imagined. It matters not. Mum knows she can tell him to leave if she doesn’t want him in her room.
The leaves and the bud haven’t turned out how I wanted them to, or how I imagined them. I could rip them out and keep re-doing them till I got them ‘right’. But why? This project was never going to be about getting it right was it? We’re all just learning as we go, aren’t we?
Mum says much less these days.
Last time I visited her I was wrapped up in a big hand-knitted shawl, and was knitting another scarf, so I was all wrapped up as I sat with her. I told her that James and I are going to Ireland for a weekend soon, to see her big sister, Jennifer. Mum looked up at me, and slowly, so slowly, formed a response to this news. She said, “So many layers”.
Maybe she was commenting on my various shawls, maybe she was reflecting on family life.
So many layers.
***
Before you go, you should know that there are a number of tasty recipes on this blog too… this evening I’m intending on making the tasty Spicy Turmeric Chicken, which is oh so easy and will be a lovely worknight supper. But have a browse at the recipes, see if there’s anything you fancy making.
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; meanwhile her memories were slipping away, like me at a party I don’t want to be at.
I’ve done a bit of embellishing of the petals, which is hardly see-able on this pic. It’s clearer in real life.
I need to do a wee bit more on the greenery and then I’ll start another design on this neverending 100 day project.
I’ve been gradually going through some of Mum’s things, and there are so many sketch books. What treasure! So today I give you a bonus of two rear ends from one of her books, and some wild horses.
Some of you will know that Mum took part in the #100DaysProjectScotland last year, with a small painting each day of something from her garden. Mostly it was flowers. She would create the picture, then photograph it and send it to me to upload on her Insta. You can see them there still – she’s @alixwolffe. But one day she just stopped. She just resolutely did not want to draw. Her eyesight was failing, she repeatedly told us she was blind. And she pretty much was, but also… also I think the dementia (although it was not noticeable to any of us yet) made it hard for her to draw as she had before, with such ease. Her brain maybe wasn’t allowing her hands to produce what she could see.
Anyway.. this weekend, Mum picked up the pen I offered her and sketched a horse. Then another. They are not the best horses she has ever sketched, but they are the most precious.
I love this picture of Mum tentatively drawing those horses. I wish I had kept them, but I left the picture in her room, and a few days later juice was spilt on it, and I threw it away, in the mistaken belief that there might be more.
The final picture, shows how much she had changed by the time she went into the care home, after 5 weeks in hospital. She was diminished. But when her broken wrist healed properly, she was again able to use her wheelie walking frame (she called it her ‘dancing partner’) to zoom about the home, stopping off in the various rooms and offices, always beetling about from here to there, and then wondering where she was, why and how she got there, and then how she was going to get back home. Luckily she still had the social skills to persuade a passing member of staff to give her a push back to her room if she was tired of walking.
I have been focusing again on Mum’s 100 Days Paintings just recently, as I have submitted them for an online exhibition in early March. It will accompany a physical exhibition at the Edinburgh College of Art of 2022 100 day projects.
I have submitted Mum’s paintings (2020) and my embroidery of The Smock (2021). Neither of us quite reached Day 100, but as I say, we are all a work in progress.
I’ll update you with further news, as I have it.
***
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; meanwhile her memories were slipping away, like me at a party I don’t want to be at.
Before Mum’s dementia, this blog focused more on recipes, which you can find here. I’ve not been eating very healthily recently – too many big hearty meaty dishes, with mashed potatoes or pasta in a cheesy sauce – so I’m craving something a bit healthier, and think I might rustle up a Winter Salad, with lettuce, beetroot, blue cheese, pears and toasted walnuts. And a zingy dressing.
I know almost everyone else is on about day 62, but here I am posting day 32 of my fisherman smock project.
I started looking after Mum at the very beginning of this year. Within a week I knew something was wrong, and started reading up about early stages of dementia. She ticked every single box. But at that point it wasn’t immediately noticeable unless you knew her well…
She had a phone call with ‘that nice man’ from the Memory Clinic on 29th April and he diagnosed mixed dementia. It came as no surprise to me, but Mum was shocked. I reassured her that she was still the same person, still Mum, that Alzheimer’s was just a word, that we were going to keep making sure she was safe and happy. And that I loved her, whatever.
And all this is true.
Mum needs fulltime professional care now, and although she had always wanted to stay home till the day she died, she has settled into communal living well, not that it’s been terribly communal yet as she’s in covid isolation and not allowed out of her room.
When I saw her today she was annoyed that some of the young ones (the carers) don’t know the war has ended. She was also pleased we could play musical instruments because that saved us from the Nazis. Conversation is no longer straightforward or predictable, but that doesn’t seem to matter as much as I’d have thought. I can piece together some of the jigsaw pieces to make part of a picture. But not all of them. And that’s ok too. She knows I love her whatever.
I moved back home again last weekend, properly here to stay now, after living most of this year in Galloway. I’ll visit Mum at weekends, but not every weekend, and that feels ok too. I know she’s ok, she’s comfortable, she’s being looked after by a team of professionals who can do it so much better than I could.
All I need to do is love her. And she makes that so very easy.
I don’t often share images of Mum publicly, particularly more recent photos. But as I’m recalling the days before and after she got her diagnosis of dementia, I thought you might like to see these three pictures. The first two were taken in the week before her diagnosis, where she looks pretty relaxed. The third one, without a hat, was the day after her diagnosis. She seems so very lost to me. And she was always someone who could instill confidence in the most anxious of people.
As children, Mum told us we could all fly. If we really wanted to. And I have always believed this to be true. Mum told me, so it must be true. It astonished me when I learned (when I was MUCH older) that not everyone is brought up to believe they can fly.
I still can fly. If I really want to. Try it. You probably can too.
During those early months of 2021, when we all knew Mum’s world was unravelling, we talked about being able to fly one day. Mum looked sad, and said that just perhaps she wouldn’t be so good at it any more, perhaps her flying days were over. In my head she still flies, we fly together.
***
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; meanwhile her memories were slipping away, like me at a party I don’t want to be at.
If you feel like a bit of cooking inspiration then you could check out my recipes here. I have some sad looking oranges in the fruit bowl so shall think about making the easy peasy and miraculous Orange and Almond Chocolatey Cake.
I went for a much needed swim late this afternoon, the tide was out, far out but that was fine. The sea was almost as warm as the Scottish sun and I floated on my back and splashed my feet in the salty water. Nearby a heron stood watching everything… occasionally poking its head into the water and coming up with a snack.
Then I sat on my usual rock and stitched. And breathed in that fresh salt air.
First thing this morning I sewed more name labels on to Mum’s clothes. I’d emptied out her chest of drawers, and chosen her capsule wardrobe. The chest of drawers and a holdall of clothes was ready to go. We removed favourite pictures from the walls of her home.
And then I took a Covid test. I’m Covid-free. Phew.
Because today of all days I could not have Covid.
Today is Mum’s Escape Day.
She arrived, by ambulance, just after I got to the care home to get her room ready. Her chairs and the bed have familiar throws over them; her old chest of drawers is in the corner; there are vases of flowers from her garden.
She thinks she will be fine there. I think so too.
I needed that swim.
20 January 2023 and as I re-read those words I wrote exactly 18 months ago, tears pricked at my eyes, and I could feel a first sob try to escape from my throat. I’ve put the sob back, but the tears are gently falling.
No more to add today, except to say that yes, she has been fine there, and she continues to be so. And, as I was told on that first day, I have been able to go back to being ‘just a daughter, not a daughter and a carer’ again.
***
Finally, if you want to catch up on 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; meanwhile her memories were being thrown around like so many pieces of jigsaw in a big box.
Not in the mood for this? That’s ok. But if you feel like a bit of cooking or baking, perhaps making use of the short Seville oranges season to make some delicious marmalade then you could check out my recipes here. This blog started out as recipes, sometimes accompanied by wee stories, so I’ve got a back catalogue of tasty things to make. Do let me know if you’d like me to add more recipes in the future – I had an ambition to make a carers cookbook a couple of years ago… perhaps some day.
I’ll come back to the flower and pick out some details, but for now I’m done with pink, so it’s back to the stem and frondy leaves.
The pendant was Mum’s (of course) and I remember as a child thinking how glamorous she seemed when she put it on. Mum has never been someone who cares much about fashion and she never wore make up, except perhaps a smudge of matt pink lipstick sometimes, so glamorous wasn’t a word I often associated with her.
Mum has given me lots of her jewellery over the years, and gave me this pendant when I came to mind her back at the beginning of this year.
Then a couple of months ago I found her one day distressed and trying to remove her wedding rings (dad gave her a second gold band for their golden wedding). She couldn’t explain why but she no longer wanted to wear them, she wanted me to look after them. I did, but made a deal with her that all she needed do was click her fingers if she wanted them back.
A couple of weeks later she clicked her fingers and she wore them again. Until she broke her wrist and the quick thinking nurse removed her rings before her hands and fingers blew up like balloons overnight.
I’ve been wearing her wedding band now for the last 5 weeks, but Mum still knows she can click her fingers if she wants it back. It’s hers.
And now, 18 months after first writing those words about Mum’s wedding rings, I wear her ring all the time. Initially it felt odd to wear a gold band, on my wedding ring finger. I have never been married, so in my late 50s I had never worn such a significant gold band. I was constantly aware of it. Shortly after I started wearing it I also took to wearing a ring Mum had given me several Christmasses ago (it was simply attached to a ribbon and hung on the tree, for me to find). It had been Granbunny’s ring, and it fitted the same finger and, being a ring with a large cut topaz surrounded by seed pearls, it hid the simple gold band. I felt like the gold wedding band was my secret. It was also symbolic of the strong bond I had with Mum. And of our separation. It was a constant reminder to me (though none was needed) that she was now so very different to the Mum I’d known all my life. And also a reminder that some day, she would no longer be with us.
I also regularly wear a modern amethyst and silver ring which Mum used to wear often – I’ll never know for sure now, but I think perhaps Dad bought it for her on a trip they made to Orkney in the 90s. Again, Mum had given this to me a few years ago. The other ring I now put on every day is a simple limpet shell, picked from Carrick Shore – it feels soothing to carry this bit of the shore with me all the time; despite the slight discomfort when I first started wearing it!
I haven’t taken Mum’s wedding ring off for more than a few minutes at a time since that day she went into hospital. And each of those few minutes have been at her behest. Initially she thought she might wear it again, and she would tentatively try it on; she would also try on Granbunny’s ring… but always, always she would give both rings back to me, saying I should keep them safe.
Latterly, she talked of another woman who ‘lives here and sometimes comes to see me’ who had a ring like Granbunny’s ‘but not as special’… and Mum was somehow worried that this woman might get confused and believe that Granbunny’s ring was actually hers, or that both rings might get stolen or lost. I continued to assure Mum that I kept all her things safe. But, as ever, if she wanted anything back all she had to do was click her fingers.
In the months after Mum went to live in Fleet Valley we would occasionally take her out bundled up in a wheelchair, for a short walk in the fresh air, and then for ‘soup and a sandwich’ for lunch; or if it was still too early for lunch, then for a hot chocolate. Mum loved a hot chocolate. The first time we went out, she seemed so diminished, and almost frightened of her surroundings, and she probably was. By this time she had been institutionalised for some months, her dementia meant that she found it difficult to process anything new or unfamiliar and this was far out of her recent experience of life. Her hot chocolate arrived in an enormous cup and saucer and Mum just stared at it. We all wondered if she would be able to lift it to her mouth, and at what point we help her. Mum picked up the teaspoon, and delicately started to spoon off the froth on top of the hot chocolate, licking her lips with delight at the sweet taste. In that moment I realised that whenever I buy a hot drink with any froth on top, the first thing I do is spoon off the froth and eat it… I hadn’t known until this moment that I was just copying Mum.
Out for a hot chocolate with Mum, and she clicks her fingers to get her rings back!
There was one day, when we were having this conversation, and Mum realised that she could no longer click her fingers – this mattered not, she knew that I would honour my promise and that I was just looking after things on her behalf.
And truly, this is how I’ve felt about so much this last year. As though I am just holding on to Mum’s most loved things on her behalf. And in that list of most loved things, I include myself and my siblings.
***
Finally, if you want to catch up on 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; meanwhile her memories were being thrown around like so many pieces of jigsaw in a big box.
Not in the mood for this? That’s ok. But if you feel like a bit of cooking or baking, perhaps making use of the short Seville oranges season to make some delicious marmalade then you could check out my recipes here. This blog started out as recipes, sometimes accompanied by wee stories, so I’ve got a back catalogue of tasty things to make. Do let me know if you’d like me to add more recipes in the future – I had an ambition to make a carers cookbook a couple of years ago… perhaps some day.
I drive past the Galloway Smokehouse at Carsluith every time I go to visit Mum in hospital.
I lie.
Some days I don’t drive past, but stop in and see what snacks they might have for supper.
My brother and I knew from the outset that caring for Mum would be, as they say, an emotional rollercoaster. And it’s fair to say that it was. I hardly need to say that I’d known Mum all my life, so witnessing her slow decline each day, towards an inevitable death was almost impossible to bear.
But it was not by any stretch of the imagination unrelenting sadness and doom. Though most days one of us would cry, we looked after one another. Being in Galloway was a huge comfort in itself – the views would make my heart sing, the trees in the local woods bathed me with their dappled sunlight, but the shore was always the balm of choice for my soul. And even on days when I didn’t manage to get down to the sea, just knowing it was there, waiting, always there, was a comfort to me.
Our family has always found comfort in food, in eating well, in caring for one another through making something that nourishes their soul as well as their body. So, of course we were going to buy a lobster from the Galloway Smokehouse! And it was delicious, and only £12, if I remember right.
On the last day I drove the 84 miles round trip from Gatehouse to the hospital in Stranraer and back again, I also stopped off at the Antique Shop I’d driven past so many times. You can see its big sign on the side of a farm building from the main road, but essentially it is deep in the middle of nowhere.
It was one of the hottest days of the year (I know this for a fact, because one of my other projects that year was making a temperature blanket, so I recorded the highest and lowest temperature of each day for the whole year), and there was not a breath of wind. I’m not used to hot weather and don’t actually like it very much, so it was sweet relief to head into the cool byres and rummage about in the piles of musty furniture and random stuff. It was fairly inevitable that I’d come away having bought something, but who would have predicted the vintage jelly mould? Eighteen months on, I’m still to get into the jelly-making habit (not helped by the jelly mould being stored in Mum’s larder, while I live 100 miles away). But there’s time, there’s always time. Until there isn’t, of course.
As I write this I’m about to set off to see Mum. It’s a 200 mile round trip these days, but I do it so willingly and with joy in my heart at knowing I’ll see her when I get there. When I arrive in her room, with my arms open wide with joy, I greet her with “Hello Mum… it’s me…. Loïs”. I started doing this instinctively at a point when she found it increasingly difficult to find the words she wanted, and that could include a person’s name. And, although this is a kind thing to do for someone with dementia, I realise it is a kindness to do it in all sorts of situations (though post pandemic I don’t find myself in those network type situations any more, so perhaps I will never put this into practice).
I know that I won’t always look forward to seeing Mum, there will be times when it is more than I can bear to see her so changed from that vibrant, confident Mum we all knew – and over the last 18 months there have been times when I have almost dreaded visits. But I seem to have found a zen spot that works for me at the moment. If she is alert we can have a limited conversation, and there are usually smiles somewhere along the line. And if she isn’t, if all she can manage is to vaguely flicker her eyelids open and then go back to snoozing, then I can sit quietly knitting or embroidering for a while. I occasionally read a section of her memoir to her, or just talk to her about things she’s told me about her childhood. We often will make sure she has a lucky stone to hold, and I tell her how lucky that stone is to be held in her hand, how lucky I have been in my life to have been held by her, my favourite mother.
***
Finally, if you want to catch up on 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; meanwhile her memories were being thrown around like so many pieces of jigsaw in a big box.
Not in the mood for this? That’s ok. But if you feel like a bit of cooking or baking, perhaps making Energy Bars, then you could check out my recipes here. This blog started out as recipes, sometimes accompanied by wee stories, so I’ve got a back catalogue of tasty things to make. Do let me know if you’d like me to add more recipes in the future – I had an ambition to make a carers cookbook a couple of years ago… perhaps some day.
I sat in the shade yesterday and completed the main stitching on the cosmos flower. Sitting in mum’s garden was beautifully calming, despite my double espresso. The only sounds were of birdsong, including the less than tuneful quackery and splish sploshing of these ducks.
In other news, the swallows took a couple of weeks off after their first brood fledged and now they are back under the eaves, with a second nest of eggs.
Mum wasn’t happy in hospital. She was aware of enough to know that this was not a good place for her to be, but she was unable to speak up for herself. Our time in the hospital was absolutely focused on her and on being with her, on giving her an hour or two each day when she was reminded of who she was, and that we would do everything we could to keep her safe. We didn’t want to lie to Mum, and we knew not to make promises we could not keep, so we never talked to her about getting her home, but talked often of her Escape Plan, of getting her out of hospital, of making sure she was looked after and happy.
One day she looked up at James, and said to him “I’m not going to go home am I?”. There we were, dancing around this truth, and she just came out with it. Even in her dementia, in her confusion, she made life easier for us. This was said at the point when we were just beginning to research care homes. It was perhaps the kindest thing she could have done, though I doubt that she knew it; she took away any sense that we were letting her down, that we were betraying her wishes. We already knew we could not cope with looking after her at home any more, no matter how often a day a carer popped in to help… but it was such a relief to know that at some level Mum recognised this too.
Mum absolutely accepted that we were making good decisions for her, and was so grateful to us. We didn’t want to give her details about the Escape Plan until we had it properly in place. Bits of information could circle round and round in her head, making her more anxious if they didn’t quite fully make sense to her. So, until we had everything confirmed we just referred to the Escape Plan.. and she seemed to quite like this concept.
In other news, around this time I was finally informed that I had not been successful in the internal job interview I’d attended a couple of weeks before. I had worked out for myself that I hadn’t been successful, but had become increasingly hurt that no-one told me (despite assuring me I would be informed within 48 hours of the interview). The reason I was given for not being offered the job was that I didn’t have another language. My new colleague is ace, but we are both perplexed by this reason for me not getting the job – they don’t have a second language either.
In other times this might have been a spur for me to really apply myself to finding another job. But, it had the opposite effect – I realised that I didn’t have the emotional energy to put myself through a recruitment process. I knew I could not present my best self to a potential employer, and also that further rejection would utterly break me.
Life continued. But I had absolute clarity about where my priorities lay from now on. And work was nowhere near the top any more. This was a new way of living for me – it didn’t yet sit very comfortably, but I have always been a relatively quick learner!
***
Finally, if you want to catch up on 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; meanwhile her memories were being thrown around like so many pieces of jigsaw in a big box.
Not in the mood for this? That’s ok. But if you feel like a bit of cooking or baking, perhaps making this super simple Throw It In The Oven Chicken Dinner (I know, I should have just called it Winner Winner Chicken Dinner), then you could check out my recipes here.
Shewolfinthevalley 