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.
I’ll head off to see Mum in the hospital again soon… she is almost blind, so can’t read any more. She can’t listen to the radio as it’s an open ward. So, while we’re not there all she has is the noise and bustling activity of the ward and her own jumbling thoughts.
The Escape Plan is coming along, but it needs to be a plan that will keep her safe and that is not as straightforward as it seems. Elderly people can be so frail, so fragile. So precious.
Anyway today you have the beginning of the fifth cosmos petal. And a sketch book so no other bonus pics today.
Lately I’ve been thinking a lot about my relationship with Mum. And with her dementia.
Initially I was desperately sad, full of fear and terrified of what was to come. My biggest fears (have I written this already?) were that she would (i) no longer recognise me and (ii) have a dramatic personality change and become angry and SHOUTY. We have never been a shouty sort of family, and to this day I find myself recoiling if someone properly raises their voice at me.
To cut to the chase, so far, neither of those fears have come to pass, so I consider myself incredibly lucky .. of course I would be luckier if Mum did not need to live in a care home, if she could continue living independently at home as she wished; if she continued to have full use of all her faculties, as they say. But, given that she has dementia, I feel blessed that it has developed as it has. Watching the progression has been profoundly sad at times, but never despairing or frightening. I have never dreaded going to visit Mum, in fact I find myself yearning to be with her.
A few months ago, as Mum’s verbal communication diminished yet further, I sensed that she was struggling with taking phone calls. She often found it difficult to find the words she wanted to use, and could hardly understand what I was saying half the time. The calls seemed to make her more stressed instead of offering any comfort. Her hearing has been iffy for years, but she no longer wears a hearing aid. So I reduced my daily phone calls from every evening before she goes to bed to one or two calls a week, and generally through the day. I was weaning myself off the calls. I don’t know if Mum noticed when I stopped calling altogether, if she remembered that we used to speak on the phone every day, or if she had a sense of how long since she last saw or heard from me?
Anyway, I haven’t called her for so long now. And I miss her voice.
I wonder what she misses? She seems not to miss her easy use of language, her vocabulary, where she could always find the right words. Sometimes these days she can’t find a word, and it doesn’t seem to distress her – she just pauses and then the whole sentence seems to drift away.
She listens when I tell her what a talented artist she is, and that she drew the picture which hangs on her wall – but it’s as though I am telling her about someone she really has no personal interest in. She remains politely faux-curious about it, often responding “Did I really?” but she has no further curiosity about this aspect of her life, this person I am describing to her. Perhaps Past Mum really is someone that she has no personal interest in?
And occasionally I recount her story of when she was a 6 or 7 year old in South Africa… when she was sitting in the dust on one side of a barbed wire fence and drawing the mules which were grazing on the other side – I can still see my drawing in my minds’ eye, and feel the excitement of discovering how the legs joined onto the body.
Last time I told her of this story, she was vaguely interested in it, though she no longer remembered it. But she did acknowledge that if she told me then it must be true!
She did, however, remember that the ring I wear on my finger was her Granbunny’s ring, passed to Mum and then to me. And she remembered that her Great Aunt Janey had a very small gullet (cue: fake coughing from both of us, to demonstrate the smallness of the gullet) and that the same Great Aunt Janey had very large bosoms, and wore long strings of beads … and those strings of beads would, on occasion, slip into a bowl of soup and then swoosh back and forth across aforementioned very large bosoms, creating an arc of soup across Great Aunt Janey’s top. I feel I have known about Great Aunt Janey’s soup encrusted bosoms all my life.
And then, Mum will recall that Great Aunt Janey always said that Mum’s eyes were “green as gooseberries”. And Mum’s eyes light up, those tired gooseberry green eyes.
I can’t rely on these stories always having resonance, but while they do, they are like magic talismans to me. Talismans? Talismen? Why can’t we have taliswomen?
Not in the mood for this? That’s ok. But if you feel like a bit of cooking or baking, or even making the best hot tomato chutney you will ever eat, then you could check out my recipes here.
It’s day 42 of this year’s 100 day project. But I’ve just counted and this is only my 23rd post so far. I’m not going to stress about it, but will try to keep carving out wee parcels of time more often so I reach day 100 before the end of the year.
Most days when we visit Mum in hospital we read to her, excerpts from her ‘memoirs’ that she wrote a decade or so ago. This evening as I stitched I listened to Mum’s mother, and Mum’s Uncle Walter reading HIS memoirs which he recorded 40 years ago. Uncle Walter was blind by the time he made these tapes .. he recorded them then sent them to his sister (my grandmother) who was living in South Africa at the time.
The first chapter includes his memory of the outbreak of the first world war. I’m still getting my head round this fact. Uncle Walter was very much part of my childhood… he came to us for Christmas each year, and insisted we all be upstanding for the national anthem before we watched the Queen’s broadcast on telly at 3pm. And this evening I heard his voice again, talking about the first couple of weeks of WW1.
Your bonus pic today is a sketch of a boat by Mum. Enjoy.
Back in Galloway things were moving apace. We had made an appointment to visit Fleet Valley Care Home in two days time. Meanwhile we kept the regime of visiting Mum every day – our visits had to be booked in advance with the hospital, and only one of us at a time. I still consider the negative impact all that time in hospital had on Mum – in unfamiliar surroundings, and no longer able to really make sense of things because of her dementia, her wrist healed, but she faded. I was deep in grief, had been for 6 months by this time, and was operating on some kind of auto pilot.
The only people I was really in touch with were family, my work colleagues (all online, which was possible due to the pandemic with all of us working from home, wherever home may be) and my friend Juliet. And I had become really aware that I had nothing to talk about apart from how Mum was, and how it impacted me. And this was of little interest to anyone else outside of our immediate family circle.
With hindsight it is clear, but even at the time I was aware, how very close to being absolutely broken I was. And this had all happened in a relatively short space of time – from January 2021 through till the July. Could I have done things differently? Could I have looked after myself better? I honestly believe that if you turned the clock back I wouldn’t do much differently. We were feeling our way, we were deep in grief, but also there was a Global Fucking Pandemic on, as I kept saying to anyone who would listen (which we have already established was a very small circle!)
I’ve been dipping into Mum’s memoirs again recently, and had forgotten about this passage from her early life in the Cape, in South Africa:
I had a serious illness when I was about 3 or 4 and remember little about it. I got diphtheria. The Dr was called from Somerset West and I was bundled up and taken down to his cottage hospital where (so I’m told) the matron refused to admit me because of infection, and the Dr had to threaten her with the sack to get me in. I remember vividly that after the crisis was over I was brought home and put into the spare room – the indignity of being put into nappies when I was long ago potty trained! My convalescence was long – there were not antibiotics, and penicillin had not yet been discovered.
And every time I read it, I can’t quite get my head around the fact that ‘penicillin had not yet been discovered’. I have, of course, done the most cursory of research to make sure that this fact is true (one of Mum’s superpowers is to state things with such conviction that you would never question it… only once or twice in my life have I discovered that what she was saying was ENTIRELY bogus). Anyway, I’ve discovered that penicillin was first discovered by Alexander Fleming in 1928, but I’m guessing hardly anyone knew about it at that point. And it wasn’t until 1942 that it was successfully used to treat a patient… so in the mid 1930s when Mum had diphtheria she would have had to wait about 8 years for a dose of penicillin, and even then it would have been unlikely she, a small girl, would have received it, as later in her memoirs she reminds us that that during the war priority was given to soldiers and war wounded.
Mum returned to Dumfriesshire, Scotland during the War, with her Mum and her two sisters. I will share much more, but this passage describes the second time she was (with hindsight) denied penicillin…
I got appendicitis and was sent to the Moat Brae nursing home where Dr Gordon Hunter took it out – he made a bad job of it as it wouldn’t heal and I have a huge scar on my tummy to this day. (No penicillin for non-combatants in those days – it was a new ‘wonder drug’ and kept for wounded and forces people. I was in the Nursing Home for at least 2 weeks which I really enjoyed and recovering at home for months – in fact I never went back to the Academy to my great relief.
Now, in late 2022 diphtheria has been in the news recently, following an outbreak at a refugee detention centre in the south of England. I’m glad penicillin can now be prescribed, and the outbreak seems to have been curtailed.
Later in life I recall Mum in bed ill with pleurisy. To this day I don’t really know what pleurisy is, but I’m guessing something to do with lungs. I could google it, I know, but that is not the point of this story. I was young, and was aware that she was really very ill. The doctor came to see her, and at some point while she was ill it was established that she was now allergic to penicillin! I have no recollection of what happened, or what symptoms led her to realise she had this allergy.
While Mum was ill, Dad would have continued working, and Rachel Chalmers, our babysitter, came to look after us. I adored Rachel. She was old, or what I thought was old. And her birthday was Christmas day. She lived with Emily, her ‘sister’ at the other end of Fleet Street. Mum described them as women whose loves had been killed during the war so they ended up as spinsters living together. Emily was petite and dainty, Rachel was tall and somehow mannish. I may be wrong, but I only remember one bedroom in their tiny wee house and assume they were not sisters, but partners. I hope so. I want to believe thy had all those years of love, instead of all those years yearning for the love that was taken from them during the War.
***
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. It includes, somewhere in there, a link to my fundraiser for Alzheimer Scotland… pause for a minute before you skip over that link, and know that any and every donation will make a difference. We are all much more hard up these days, I know, but if you have a spare pound, please consider gifting it – when enough of you do this, we can make a real difference to people’s lives.
Not in the mood for this? That’s ok. But if you feel like a bit of cooking or baking, including the best Christmas cake for people who don’t like Christmas cake, then you could check out my recipes here.
There are so very many shades of pink aren’t there?
The smock comes along slowly… and in the garden the roses smell divine. I’ve actually come away for a couple of days (reflecting that last time I did this, the time was cut short as Mum fell and broke her wrist) and it feels so very good to be home with The Captain for 48 hours. Yesterday we picked up masses of bedding plants from our neighbouring garden centre and filled every planter and trough and tub… the car was like that scene from Frankie and Johnny with the flowers in the van, you know the one? And now the terrace is a mass of colour again.
Your bonus pics today are roses after the rain. They still smell as sweet you know.
I had been away for a couple of days, but I think I was already back in Galloway when I posted this.
Being home had made me realise quite how much I had put my life on hold. How much The Captain (my partner) had too. And I realised that he missed me, though being a West Coast Scot he rarely admitted to it, not before a drink anyway.
I missed the easygoing relaxed life that we had created in the Valley. I mean we never did nothing, we were always doing something, had a project or two on the go, and despaired at how much more there was to do… but it had been so lovely doing stuff together for a couple of days, making our home feel more home like. And as I type this a year on, I am fully aware that this year we have not bothered to fill our window boxes and troughs with flowers.. perhaps because the pattern now is that we are away pretty much every other weekend, or more often, down in Galloway.
On this same evening I was knitting whilst messaging my friend Juliet on WhatsApp. I had made a mistake and spent about an hour un-knitting back to the place where I had made the mistake. And then I said to her: “I have finally unknitted to the mistake. And it may not be the mistake I thought it was.” (I can tell you now that it wasn’t, it was all absolutely fine, no mistake at all). She replied, “Ha! That’s not like you at all!” (which we say to one another when we admit to overthinking something).
And it’s only now, with hindsight, that I see what she did. And what I did. Juliet is amazing – I wish you all had a Juliet in your lives.
Anyway I hope your lives are all going well, and that if you need to unknit anything in your life you stop and think and check if there really is a mistake there at all. … and even if there is, does it matter? This last year I have learned how there are far fewer things that really matter in life than you imagined. And often they are not the things you might have thought mattered.
Remember to tell the people you love how you feel about them. And don’t just casually drop that love word into their lap. Make it special to them, tell them what it is about them that you love. They may never thank you personally for it, but it will stay in their heart and sustain them.
***
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. It includes, somewhere in there, a link to my fundraiser for Alzheimer Scotland… pause for a minute before you skip over that link, and know that any and every donation will make a difference. We are all much more hard up these days, I know, but if you have a spare pound, please consider gifting it – when enough of you do this, we can make a real difference to people’s lives.
Not in the mood for this? That’s ok. But if you feel like a bit of cooking or baking, or (swoon) the most incredible blackcurrant ripple ice cream you will ever eat, then you could check out my recipes here.
I made a petal! It might not be the best petal, nor how I had first pictured it in my head. But it’s ok. And the slow stitching, the progress at snail’s pace is fine. Our worlds don’t always have to be accelerating, there’s a joy in slowing down and focusing in on what ever works for you.
Mum’s world grew smaller (in our eyes) over recent years, as she first gave up her car and became increasingly less mobile. But not once did this seem to diminish her, or reduce her enjoyment of what she still had. Instead of trying to take everything in, she seemed to focus on what she loved in her life … she has a remarkable ability to adapt to her circumstances and to make the very best of what she’s got. She still does this, despite her challenges.
Such treats for you today in the bonus pics! I found a sketch book with these beautiful horses, reminding me how she loved to draw horses all her life, from that moment as a child when she worked out how their legs joined their bodies. These horses are probably from about 10 years ago, maybe more, maybe less.
The last pic is of Mum on the right wearing a handsomely smocked frock, and her wee sister, Joyce, in the middle and her big sister, Jen, on the left. Such adorable girls. Such impressive women.
As ever, click on the link to find out more about supporting people with dementia. And their families and loved ones. It’s emotionally draining and we can only look after our nearest and dearest with the support of others. Thank you for being here.
On this day, my brother and I drove back up to Edinburgh for the night. We were booked in to visit a couple of care homes the following day. I had known nothing about care homes. Not a single thing other than what I’d read in the media … this had to change. I had been sent a book by June Andrews, which was my bible, full of useful information and reminders, for instance that we were not seeking a country house retreat, Mum’s needs were not for swag curtains and soft squishy sofas.
In the end the first home we planned to visit had to cancel the appointment at short notice as they had a covid outbreak. We had a lazy morning in the garden, with cups of coffee, my embroidery, and easy conversation.
Covid was still very much part of our lives, but that care home visit was the first time I took a Covid test. James and I were sat in a far away corner of the home, next to a wee table covered in all the testing paraphernalia and told to test ourselves. … but we were both totally rubbish and kept gagging, unable to get a sufficient sample, and in the end a carer had to come and shove the wee stick down our throats. That wait was more anxiety-making than I’d anticipated – I mean I’d seen so few people, other than in a hospital setting for weeks so it seemed unlikely that I’d caught Covid. But I was more than happy to have confirmation that I was ok. And I was.
The home felt modern and spacious and relaxed. There was a sense of calm around the place. It was also eye-wateringly expensive, but we had come to discover that this would be the case wherever Mum went, though perhaps Edinburgh Southside was more expensive than some other options. We had also had a ‘zoom tour’ of a home near where I live, and it was, I think, £600 per week cheaper than this one. Being cared for in your old age does not come cheap.
We came away from that visit feeling positive, thinking that if Mum made that her home she would be ok, and certainly better than how she was now, in hospital. As I noted last year, she is someone who still has the ability to make the most of what she has, she seems infinitely adaptable.
The home nearer me was our preferred option (and not just because of price) but they had no beds available – we would have to wait until someone died before Mum would be able to be considered for a room. We asked to go on the waiting list. We also looked at the paperwork for the Edinburgh home.. timing might mean that it was our only viable option, perhaps as a short term solution (though the idea of settling Mum in a home, and then moving her to another filled us with horror).
Our belief was still that the thing that would make the most difference to Mum’s wellbeing was our visits. Perhaps we have been too self-centred, and there is something else, but I’ve come back to this question, of what helps Mum to live her best life, over and over. And each time I come back to her spending time with her children. As her sight deteriorated, and her brain smooshed, as her communication came less easily and she could no longer follow even the simplest of stories it was harder to think how else she could fill her time. People always talk of music being The Thing for people with dementia – but Mum had never really been interested in music, she never had it on in the background. Music was Dad’s thing, Mum defined herself as un-musical. I inherited that gene, though I do like music on in the background – it’s like nice wallpaper to me though, rather than a thing I engage with.
Another thing we felt clear-headed about was that the culture of a home depended on the person in charge – a year later I still believe this to be true. But I also know that looking at care homes is a bit like going for job interviews and thinking that you know what it would be like working at the company. You don’t. You know what they want you to know.
Anyway, for some reason I have posted these slightly out of order… this original insta post came before The Operating Theatre. But I don’t think it really matters. I have come to have a much looser relationship with time, since Mum has lost her relationship with it altogether. It honestly does not matter if today is Monday or Thursday (unless I have specific things in the diary for one of those days).
***
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.
Another petal is nearly complete, and I definitely feel like I’m improving my embroidery skills. I still need an eye test and new glasses though.
Mum is still in hospital, having rehabilitation to get her mobility back after falling and breaking her wrist. It’s a slow process, given her frailty and also her difficulty with short term memory which makes it tricky for her to learn new ways to do things.
Two bonus pics today. The first is a bowl of pears poached in Madeira… somehow there’s always a bottle of Madeira at the back of the cupboard and it’s the perfect match for pears. And the resulting ‘pear juice’ is the best treat to take in to hospital for a rehabilitating mother.
The 2nd bonus pic is of my maternal grandmother’s childhood home. Gran went back there during the war, with her daughters, including Mum. They lived in the Gardener’s Cottage when the main house was handed over to the Norwegians who turned it into a temporary hospital. Mum tells a story of the day she jumped into the water tank, and nearly sliced her foot in two on a broken jam jar. She was carried, foot held high, up to the house where it was stitched back together in this operating theatre.
I’ve also added a picture of the X-Ray in the Servant’s Hall, as it is described in Gran’s old photo album.
Looking at what else was going on in my life, I see that this was the day I had the interview for that internal job I went for. I had hoped to hear back from them by the end of the day, but heard nothing, so by the evening was fairly confident that I wouldn’t get it. My manager (who would continue to be my manager) was goin on leave at the end of the following day, and had assured me that they wanted to make a decision before she went on leave. Having put myself through the application and then the interview process, I had come to realise how much I disliked aspects of my current role and wanted the change. I also knew that my head was all over the place, and the practicality of it all meant that if I got the job, they would have to recruit someone to take my role, which I’m not sure was desirable for anyone – our team had been under-resourced for ages and we were all looking forward to a full team.
By the end of the following day I still hadn’t heard back from the interview. I sent my manager a message wishing her a good holiday before she left .. and no mention was made of the outcome of the interview. I should have asked, and in different times I absolutely would have, but I was so broken, so low.. I had lost so much of myself these last few months.
My brother and I went down to the sea that afternoon. When I look now at the pictures I took, the sea and the coast looks glorious. We look like husks.
***
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.
On June 27 2021 I uploaded this picture, looking across the Solway Firth towards the Mull of Galloway.
And I wrote the following: On the way back from the hospital today we stopped off for a roadside picnic.
So, by this point Mum had been transferred from the Royal Infirmary at Dumfries to the cottage hospital at Stranraer.
I guess this happened in the in-between days, as I make no reference to it on my Instagram posts from that time. But then it really was so appallingly managed, as if designed to cause maximum distress to Mum and to us through miscommunication, bad planning (actually it felt like no planning at all, just reacting) and just casual lack of care for any of us. There had been angry phone calls. There had been tears of frustration. And we had dropped everything and jumped into cars in different directions (so one of us could be with Mum in the ambulance taking her from Dumfries to Stranraer, and the other one could meet them in Stranraer… get her settled and then drive all the way back to Dumfries to pick up that car, before going back to Gatehouse). And with all that, Stranraer hospital were not expecting her when she arrived. The admission ‘process’ would have been so much more distressing for her had we not been there to talk to the staff, and to advocate for her. Never had we been more grateful that Mum had done the paperwork some years earlier to make us both her Welfare Attorneys.
We were uneasy about a move to Stranraer – which we knew was entirely illogical. It turns out that the drive to the wee hospital at Stranraer takes about the same time as the drive to the new hospital at Dumfries. But somehow, to us, it felt like it was in the wrong direction (it was not en route to mine or James’s homes, and could not be done easily if we returned home instead of camping out in Galloway).
But it happened. And when she was finally admitted we knew that it was a significantly better environment for Mum. Though still not ideal, she was at least no longer living in complete isolation in an unfamiliar place – it was unfamiliar certainly, but her whole life was becoming unfamiliar to her. She was in a 4 bed ward. The staff were friendly and constantly bustling about – and somehow the rooms were more connected, more open to the corridors, so there was a sense that she was more connected to the world.
The visiting restrictions were similar to those at Dumfries, in fact I think they were in theory more restrictive as we were only allowed one 45 minute visit by one person each day. So one of us would make toast in the morning, and pack up a basket with dry toast, her memoirs, and a single flower from the garden (which would come back with us, as flowers were still not allowed in hospital wards).
When we got there we’d butter the crispy dry toast, right to the edges all around, as she specified. And then spread it with marmite, cut it into wee bite sized pieces and smile as Mum tucked in. This was one way we could still care for her, show her how we loved her. She always loved her toast and marmite, and was thrilled that she was getting something special.
Mum had little curiosity in the outside world by now – she rarely asked about other people or about how our lives were (just as well really, because I’m not sure we had much to offer on that front!). She had always been someone endlessly curious and interested in other people.
We would read a few pages of her memoirs, giving her those familiar stories of her own life back to her. She would sometimes add extra details, though less often than even a few weeks before… she would still finish sentences word for word. She had some favourite stories, mostly ones involving ponies. Or perhaps they are my favourite stories. I have such a soft spot for Tiny, the cantankerous wee pony who didn’t like walking through puddles… but would lie down and then roll about in them – so whoever was on her back needed to jump off quickly to avoid getting soaked and muddy and squished by Tiny! Or there was Rosie, back in Scotland, who pulled the sledge through the snow, with 8 year old Mum and her big sister Jennifer on it. Such happy times, and Mum had carried these stories for over 80 years, so no wonder they were embedded in her very heart.
But back to the end of June 2021 – we had by this point come to accept that a care home would be the best place for Mum to move to on discharge from hospital, and we were actively looking at options. We felt that the thing that made the most difference to Mum’s wellbeing was seeing her family (and by that we meant either myself or James, primarily). So this led to us looking at care homes near where I live in the Clyde Valley, or James in Edinburgh. And of course we were doing our research. This was all so new, such a foreign territory for us.
If you take anything away from this, please think about how care homes can help you to live your best life for longer. Caring for elderly people at home is hard, and has indignities and loneliness. What happens if you are no longer able to go to the loo independently, but the care package only allows for someone coming to see you four times a day? And what if you are still sort of mobile but a bit wobbly, and you fall at home? How long will you lie there in pain till someone finds you? Honestly, care homes are designed to look after us at the time in our lives when we need more care.
Mum had always wanted to stay at home, but it was not going to be possible to keep her safe, or to allow her to live with much dignity if she returned home. This decision a few days before (when we hadn’t realised the extent of Mum’s ongoing needs) had seemed like a betrayal, like we were letting her down. Now it felt like the right thing.
And the following day Mum said to James, “I’m not going to go home am I?”.
Till then, she had been focused on getting home. Home was where she wanted to be, where we all had thought she needed to be. But not now.
And she didn’t know much, but she knew this. She gave us the permission to make plans with her blessing (though perhaps not expressed quite that explicitly).
Our focus now was on her Escape Plan, we were going to spring her out of hospital… but exactly how, we did not know.
But if I know one thing, it’s that first of all you need to know what you are trying to achieve… and then you will work out a way to achieve it. This is true in so many things in life. I love a plan.
***
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.
It’s been too long. But I just haven’t had those quiet moments when I can sit and stitch, trust me if I’d had them I’d have picked up the smock straight away.
You’d have thought that sitting in hospital with Mum would be the perfect time and place, but it just hasn’t been. I did some crochet with Mum which was quietly mindful but the embroidery is too hard for me to do with her.
The thing that gives Mum the most pleasure (tho pleasure may be putting it too strongly… contentment perhaps) is being read to. But we can’t read just anything… we read her ‘memoirs’ which she was encouraged to write some years ago by my cousin Mary. They chart her life, focusing on her childhood and then the years before she married Dad.
One memorable passage describes how she recalls being on one side of the fence, with the farm mules on the other. She had a stick and was using it in the dirt to try to draw them. She recalls that joy when she worked out how their legs joined to their bodies. This was more than 80 years ago and she wasn’t yet 8 years old.
I’m writing this almost exactly a year on from that moment. It’s been quite the year, but we are all settled into a different sort of normal now, in so many ways. So many of us refer to a new normal and for most of us, this state relates to how we are living with Covid, now the very worst of the pandemic appears to be behind us, but with Covid still very much in our lives.
And of course this is part of our new normal too. But the deterioration in Mum’s health has had (and continues to have) a far greater impact on my life than Covid has. I feel like we are in limbo now… waiting for another life beyond all this, while desperately holding on to this life too.
The more I read about dementia and how social isolation can accelerate the decline, the more I believe how damaging the first year of lockdown was for Mum. We had been used to going down to see her every couple of weeks. But immediately we stopped, only seeing her for essential hospital appointments every couple of months (and those appointments became more and more stressful). She no longer had a constant stream of friends and neighbours just dropping by. I phoned her every evening as I had since Dad had died, and she said she was fine, that actually she really quite liked her own company.
But during that year things changed. And by the end of the year our phone calls had become formulaic. She would list for me what she had done through the day, in a way that (with hindsight) reminds me of one of those parlour games. The one we used to play was The Minister’s Cat … going round in a circle we would say what the Minister’s Cat was taking on holiday (can this be true? was this really the premise of the game?)… anyway, each of us would add a new thing that the Minister’s Cat was taking .. and then the next person had to add a new thing and then add all the things that were already going on holiday with that pesky feline. My evening phone calls were more mundane than the Minister’s Cat – they generally started with her waking up, then detailed breakfast, after which she got dressed. And so the report of the day continued… in my memory she didn’t often ask about my day, though I would often give her snippets of detail about my day which, given we were in lockdown, had little of interest to report either!
But thinking back to June last year when Mum was in the Royal Infirmary. She was so very unhappy, so lost. And we didn’t know how to ‘fix’ it. There probably was no way to fix it, so we did what we could, visiting her every day and trying to find things that might give her some comfort. Her eyesight was poor and although she could still read if she used the big magnifying glass, she hardly read anything any more. I think she was unable to hold whatever she was reading in her mind, so it made little sense to her. Or perhaps she was just so EXHAUSTED from trying to hold things together, from trying to be ok, that she had no energy for reading. Or perhaps she just didn’t want to read. Because I hardly read anything in lockdown either. Not everything that Mum did was ‘because of her dementia’, even if it felt like that was the driving force behind EVERYTHING in our lives.
My friend Juliet has been the most incredible support over the last couple of years. I see that at this time she was submitting a funding bid and I had asked if she wanted me to read it. She enquired if I wanted to. And I reflected that “I’d like to think I can do something other than look after Mum”. Because really every hour of my day was consumed with caring for her, whether or not I was in a room with her. And it had been like that for 6 months for me. Juliet, being the wise woman that she is, reminded me that I know I can do other things, just that Mum was my priority just now. The reminder that this was temporary, that things would change, that I would not always feel trapped in this washing machine of emotions was helpful. It also amused me NO END that I was finally proving (to myself at least) that I could really FOCUS on one thing… all I had needed was a reason to focus!
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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.
The vase was made by a local potter, Tom Lochhead. Mum had known him, and he had inspired and encouraged Mum to start her own wee business making sculptures of domestic animals from clay. She owned a few of his pieces – a small jug and also a crocus bowl, both of which she has given to me in recent years when all Mum’s Christmas and birthday gifts have been things from the house that she was trying to get rid of.
Since buying that vase, nearly a year ago, a few other pieces have found their way into my possession… including the beautiful bowl above, and several other vases. No doubt in coming years, I will follow Mum’s lead and give them away to people as Christmas and birthday gifts. Meanwhile, I get such joy from picking a few sprigs in the garden and having a wee vase of flowers on my desk.
But, back to 25 June 2021… that afternoon I sent a message to a friend: I have switched off Mum’s Rayburn. .. I cried a wee bit but in a good way.
That Rayburn. It was the physical beating heart of our home, an extension of Mum’s love and warmth all my life. I learned to cook at the Rayburn. Our big ginger cat jumped onto the hot plate of the Rayburn when it was a kitten and PROING! immediately jumped up and off like a cartoon kitten when it realised it was HOT. Dad’s supper was always left ‘in the bottom oven’ back in the day when he was travelling back and forth from Edinburgh, and would always arrive some hours after we had eaten our supper. Meringues cooked like a dream in that slow bottom oven. You could make your own yoghurt overnight, using the gentle background warmth to keep the culture happy. I never really learned about timings when making a meal, as everything could be kept ‘on the side of the Rayburn’ to keep warm once it was ready. The oven in the Rayburn is most forgiving, making perfect roasts, warming stews and light cakes. Of course there was also that Christmas when we put the turkey in the Rayburn at breakfast time, only to notice at coffee time that the temperature had not come up. It had run out of oil, and would not be cooking our Christmas dinner that day.
In recent months, I had been reacquainting myself with the quirks of cooking with a Rayburn. It was a delight to take a slightly slower approach to making all our meals. Weekends were for batch cooking stews, casseroles and soups, sometimes a roast on Sundays. And through the week, the Rayburn would gladly reheat those batch-cooked meals from the freezer, so we could easily enjoy our main meal of the day at lunch time, and I could still get some paid work done.
It was impossible not to cloak the switching off of the Rayburn with meaning. But even without my default setting of overthinking and over-analysis of the situation, it was just heart-wrenchingly sad to lock the door of Mum’s house behind me, knowing that next time I opened that door all the warmth would have gone from her home.
At this point I think perhaps we knew that she might have left that home forever, although we were still fighting to find ways for her to come home when she was able.
(As an update to the last post, I did not get the job. It was handled incredibly badly and I regretted applying for it. It totally knocked my confidence for a while. However, the candidate who got the role is now a great colleague and I realise that however capable I was of doing that job, I know I did not have the headspace to persuade anyone else of that at the time. Since then I have thought a lot about work, and what I want out of it… and I have far better clarity now around how important (or not) my work is to me. It is no longer a key part of my identity, my social life does not revolve around it and it is not where I am inspired and learn and feel myself growing.. but I am lucky in that I am finding other ways to find that fulfilment. Work enables me to focus on what is important to me, and that feels very liberating.)
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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.
After several frantic days we have now settled into a new temporary normal.
Mum is still in DGRI, but is getting stronger and each day she seems a wee bit closer to independence and being able to come home. My brother and I each do half day visits so she has company most of the day and over mealtimes – the company is so important to her, as the dementia means she can feel quite lost. And today, although we’re not technically allowed to bring in flowers, we brought one wee sweet smelling rose from her garden. Such power in that wee flower.
And this morning I headed down to the beach with my smock and reminded myself how to do French Knots. The muscle memory was there, and for a while there was just me, and the sea and our memories.
I really appreciate everyone who has sent messages or been in touch or made donations. Thank you a million times. If you want to provide support for people living with dementia click the link.
Being by the sea restored me.
I only have to think of that beach and I am restored. I can smell the briney sea, hear the rhythm of the waves, the birds, and the wind, always a wind down there by the edge of the land.
We were, at this stage, preparing for Mum’s return home, and as well as some gentle crafting by the sea I also had to be home to wait in for the Care Call Engineer, to fit a pressure pad under Mum’s mattress, so we (and the agency) would get an alarm if Mum was out of bed for more than, say, 20 minutes through the night.
It’s just as well it was around midsummer and the days were as long as they were, because there was much to do.
It was a hospital day, so I’d make the one and half hour round trip, and try to spend quality time with Mum; and there was a new role at work that I felt I should apply for – it was a ‘sister’ role to my own, but more focused on one type of fundraising, instead of the role I held which was split across two teams and (to me at least) no longer made much sense. The role had been advertised externally and I had been hesitant to apply – I knew I was not in a particularly good place and feared that I did not have the resources to perform well at interview. If I got this new role, it would be worth it. But if I didn’t, I couldn’t imagine that I would even want to stay in my current role.
Fortunately (in some ways) I’d had to apply for my own job about a year previously, when the fixed term contract was made permanent, so I had some paragraphs I could cut and paste for this new role. But, of course, the application form had been ‘updated’ and there were new questions… ‘What are the challenges of remote working in this role and how would you address them?’ ‘Please give examples of work you have undertaken that demonstrates our Commitments of Communication, Collaboration, Consideration and Change’. I’ll be honest, those commitments had been rolled out some 2 or 3 years previously, with all staff sent a weeny wee leaflet listing the four commitments and what was meant by each one. But since then, I’d seen no mention of them. Ever. So it slightly surprised me that it was something we now recruited against.
In the past I would have told Mum about going for the new role, would have known that she might not have understood why I was so unsure about it, but just having her listen to me, and wishing me luck, and telling me that she would give me the job if she had it within her power. That would have been a comfort, would have given me some of the strength and energy to go for it.
Instead it felt like something I had to do, it was a chore. If I didn’t apply, it demonstrated that I was not interested in progression (I now realise that actually I’m not, and that’s ok). I had been encouraged by my line manager to go for it. I wanted it.
Anyway… I did it. A good friend helped me polish the final application, and edited out ‘some of the snark’, which was definitely necessary. And then, later, she reminded me that I had to submit it by 10pm, or else she would submit it on my behalf. I was relieved to press the send button, and hopeful that I could make positive change to my somewhat unsatisfactory role at work.
But honestly, the only thing I really cared about was getting Mum home.
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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.
Shewolfinthevalley 