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.
Sometimes holding on is precarious. Our fingertips go numb and we are so near the edge that even taking a single breath feels dangerous.
And sometimes holding on is just love.
I opened the post that morning and found this gift, from the artist. I had built up an Insta-friendship with Ruthie through our 100days projects and I’d bought some of her work, which I just adore. Finding this gift in the post was overwhelming, such a powerful message, and also such incredible kindness to give me that advice.
So, I kept holding on. We keep holding on.
And looking back, I see that a few days earlier I had messaged my friend Juliet to thank her.
SheWolffe: I thank you
Juliet: It was nothing
SheWolffe: You’ve held on to me some days. When I was quite unmoored.
Juliet: It is the very least I could do.
Juliet, who was 100 miles away, may say it’s the very least she could do, but we both know that it was so very much, and I will always, always, thank her for not letting me fall too far, for holding on.
And then a few days later, on 3 August 2021 I was back sitting on our glorious Terrace overlooking the Clyde Valley and I posted this pic and wrote this
Holding on
During this time, Mum was still in quarantine, after being in effective isolation for five weeks in hospital. She couldn’t read any more, and was utterly bored. She no longer got any pleasure from listening to an audio book, or the radio – her short term memory was smoosh, so she couldn’t follow a story from one sentence to the next. I wondered if she would be ‘better’ when she got out of quarantine, or if this was it? Was it too late?
We were all just holding on.
I hope that whatever is going on in your life, you are holding on. Holding on to beauty, to love, to joy. And holding on to those you love.
***
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.
If you feel like a bit of cooking inspiration then you could check out my recipes here. Today I’m making a batch of Chinese Beef, and also Coconut Slice, neither of which feature in my recipes here, but probably should. Let me know if you’d like to see them. They are so very very tasty.
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.
The slow pace and the sort of mindless/mindful focus I need for this project is good for me. I could just pick it up and do a single stitch, and that would be enough. But actually it never is. I always get drawn in, do more.
Some of my happiest childhood memories are of going down to the beach in the summer holidays. I’d put my swimming cozzie on under my frock, for speed of getting into the sea. Then mum would bundle us all into the back of the car, with our towels and buckets and spades and chittering bites.
As a child, isn’t the road to the beach the most exciting journey? … we all knew the EXACT spot where we’d first see a glimpse of the sea, shimmering beyond the fields, and we would all squeal, “I see the sea! I see the sea!”
In Mum’s memoirs she’s written of doing exactly the same with her sisters when they were all kids, being driven to the Cape in South Africa in their Dad’s car. Evidently Grandpa used to beep the horn to accompany their chorus of “I see the sea”. Until the time the horn stuck. And there was a constant beeeeeep for the three miles to the coast.
Your bonus pics today are of me at the beach. A few years apart.
In other news, we are putting in place Mum’s Escape Plan to get her out of hospital. More on that soon, once the plan is less fluid.
And just over a year on from writing that post, I have again been getting excited about seeing the sea. (this was drafted Monday 18 July 2022) We’ve had seriously hot weather the last few days and more tomorrow. We’re not as hot here in Galloway as some other parts of the UK are, but I took this morning off work and we were on the beach with the dogs by 8.30am. It was blissful, and being there just relaxing in the sunshine, in the gentle breeze, watching the tide going out, the tide coming in, has been just the tonic I needed. We spent all of yesterday morning there too, reading Sunday papers, embroidering, paddling about in the water, walking out to the island at low tide, and making friends with people who have discovered this magical place and were wild camping.
Looking back to last year though… the day before I wrote the post above, my brother and I had both gone together through to Stranraer to the hospital, to meet the discharge team, or whoever they were. I know we had struggled to establish how decisions were made about Mum being discharged, and who made those decisions.. and what criteria were used to make those decisions. We were pretty confident that as her principle carers (prior to being admitted to hospital) it was probably important that whoever was involved in making those decisions included us in the discussions… But I think if we had not pushed for our involvement, there would have been a decision made about Mum and we would have found out about it afterwards.
The team was trying to put together a care package, so Mum could return home. The package would comprise of 4 visits per day, to help Mum get to the toilet, and to get her dressed in the morning, and ready for bed at night. The rest of the time she would be on her own.
I still feel physically ill when I think of how this would have impacted Mum. Mum, if she was helped out of a chair, could manage to get herself about – her legs still worked. But she had broken her wrist, and for some years now had been used to pushing herself up off a chair by holding onto the arms of the chair with her hands, and using the strength in her arms to leverage herself up. She could not do this with a broken wrist bone which was not yet full healed. But she had dementia. She would forget this, and would try.
I could go on, listing all the many reasons this care package was not going to work for Mum – but for two reasons we never had to consider it further. Firstly, there are insufficient carers in the region and they could not cover all 4 visits every day. Until they could put all 4 in place, Mum could not leave the hospital. But secondly, we had already decided that a care home was really the only way we could see Mum being able to live with dignity, and this is what we wanted. We were considering paying for this privately, and had already looked at some options.
During the meeting, the social worker asked if we would consider Fleet Valley, even as a short term option until something closer to where we live became available.
Fleet Valley is the care home in the town that Mum has made home since the early 60s. We all lived a few doors along from Fleet Valley in the 60s, 70s, 80s, until Mum and Dad sold up and moved to the other end of the town after us kids had left home. I think initially we had been so focused on what was easiest and most convenient for us, while also giving Mum what we thought would be best for her, that we hadn’t seen what was right in front of us. Of course Fleet Valley was a sensible option. Apart from anything else, she would be cared for by people who knew something of who she used to be, and that (to this day) feels important to me. While so much of Mum’s identity has eroded, I like to know there are people with her every day who knew her when she was Provost of the Town, perhaps know that the pavement out to Port Macadam is known (by some) as Mrs Wolffe’s Motorway, remember her fighting to save the local school from being closed… this is part of who Mum is.
And, Fleet Valley, we were told would have a room available soon, in the next week or two. Would we be interested? Things were about to happen, and they would happen quite quickly.
Until then, one of us made the journey to Stranraer and back every day.
***
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.
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.
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.
My big pink cosmos flower is beginning to look a wee bit more like it might be recognisable as a flower. Squeee!
In the background is another bunch of flowers from the garden. Mum loves her garden and makes creating a wonderful space, full of interest and colour all year round, seem so easy. She just has a great instinct, matched with some serious knowledge.
Today I give you two bonus pics, both hand drawn.
The first one is a pencil sketch in the back of her school poetry book, so probably drawn by her as a teenager.
The second is by her youngest grandchild. Thank you Camila, what a kind and talented child you are!
I was struggling at work during this period. I was probably struggling fullstop.
But I was lucky with work, they had brought in good flexible working policies for people with caring responsibilities in January 2021, so I could use 20% of my working hours as caring time – this had helped in the first few months of the year, when Mum was still living at home, semi-independently. But now that so much of our time was taken up travelling to and from hospital, this wasn’t sufficient. I decided to take two days off a week, so on those days I could devote myself to Mum, and also not worry about how wrung out I was on my return from the hospital. Because invariably I was wrung out.
I was constantly anxious about the future. It felt certain that Mum’s condition would deteriorate (at a rate unknown) and then inevitably would die. It also felt certain that Mum would never ‘be herself’ again, that none of us could look forward to a better time with her, a more enjoyable day, or even just an easily relaxed day when we were happily companionable in one another’s company. Every time I thought about how her life had changed, how our relationship had changed I would well up with tears. And if ever I allowed my brain to fast forward to a time when Mum would not know who I am, the tears flowed freely down my cheeks. So, I learned to live in the moment with Mum, to accept her each day for who she was that day, never comparing her to a previous version of herself, nor to an imagined future Mum. It was surprisingly easy once I got my head round it, and free-ed me up to really be with her each time we were together. And, you know what? Every single time I have seen her, there has been so much still to love about her. And today, over a year later, she has little in the way of actual conversation these days, but we laughed together this morning, between her peaceful snoozes.
***
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.
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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.
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.
Shewolfinthevalley 