Taking Smock of the Situation

17 Jan
SheWolffe trying on the smock before the embroidery started

On 1 June 2021 I joined the 2021 100 days project.

For those that don’t know the 100 days project, the idea is simple: you choose a creative project, do it every single day for 100 days, and share your process on social using the hashtag #The100DayProject.

I joined for the first time in 2020, during that first lockdown year. Mum was interested to join in too – her creative project was to make a small painting each day, mostly of something from the garden. She would take a photo of her painting each day and then email it to me and I then uploaded it on her Instagram account. For most of 2020 we were not allowed to see one another, and this creative act brought us closer together and I think gave Mum a positive focus each day during those long locked down lonely weeks.

Then in January 2021 I came to stay with Mum during that lockdown. It became clear that she wasn’t quite herself, and at the end of April she was diagnosed with mixed dementia.

As I started the #100daysproject I reflected that my life was now very different from previous years… I shared caring for Mum with my elder brother; our routine was that we stayed in Galloway with mum for 2 to 3 weeks at a time, and then swapped. Because of covid restrictions it was quite an isolated time, those first months of 2021.

Anyway back in the first weeks of January 2021 I found this fisherman’s smock which mum used to wear when she was sculpting her pottery animals. She never wears it now and gifted it to me. I knew right then I wanted to embellish it, to embroider it with life.

Each embroidered element would connect to mum in some way. I had no idea if I had the skill to pull this off and create something more beautiful and meaningful than the smock itself, but each stitch would be so full of love for the remarkable woman who made me.

I recorded the progress on Instagram, initially posting every day (the 100 days are meant to be consecutive) but for various reasons my days were not consecutive, and I have also now recognised that this is a marathon, and not a 100 day sprint. So, 32 weeks later I still pick up the smock some days and stab the fabric. I still upload to Instagram each day I add stitches and if you want to see progress follow #TakingSmockOfTheSituation and #Smocktales on insta.

I started a fundraiser as a sideline of the project. Of course I did, I’m a fundraiser at heart and couldn’t help myself. So, if you are moved to contribute so no one in Scotland has to face dementia alone, please click here and support Alzheimers Scotland. I really appreciate your support, but more importantly so will so many others who are struggling to make sense of either their or a loved one’s dementia. It is a bewildering disease, for all of us.

I’ll add the backlog of slow stitching progress, and eventually I might catch up with myself and by then will have formed a regular blogging habit so you can see it (and my other adventures) in real time.

Edited to add blog posts relating to this story:

The following are coming soon…

  • So fragile, so precious
  • Giving nature a wee nudge

Trying to care for Mum as she developed dementia nearly broke me on a number of occasions. I would really appreciate it if you could make a donation towards Alzheimer Scotland. They’re doing stuff that makes living with this more bearable for so many people. Thank you, thank you, a thousand thank yous.

So fragile, so precious

9 Dec

On 13 July 2021 I posted

I’m up and at it today!

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?

***

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. Or you could skip straight to the post when I first mention Mum recalling when she worked out how to draw a horse here. You’ll see some of her sketches of horses too.

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.

Memoirs and memories

6 Dec

On 12 July 2021

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.

Investment into our futures

29 Nov

I’ve been knitting every day this month.. I’ve made a few things, but that isn’t really the point. The purpose of the knitting is two-fold – I find it meditative, it calms me, it slows me down and allows me to just relax. When my hands are busy making stitches, my mind is happier.

But secondly, I took this on as a fundraising challenge to try to raise a bit of money towards research into Alzheimers. I probably don’t need to tell you how much this research is needed, and how much it would mean to me if you could help boost my total raised. I’d love to reach £500 in total.

This picture of Mum means so much to me. It was taken in April 2021, the day after she had been diagnosed with mixed dementia – Alzheimers and vascular dementia. She just looks so lost, as though she has been unmoored. And perhaps that was how she felt… we tried to reassure her that we would keep her safe, that she was still the same Mum to us… but in our hearts we all knew that things would change.

And change they have. Mum has not been able to live independently at home since July last year, when she moved to a care home. She is still so very much Mum, but at the same time there is so much of her that is no longer there, that she has no access to …

I know this is a tough time of year, that this year more than ever we are struggling to find the pennies. But if you have a couple of pounds spare, please consider making a donation. Or I could call it an investment, in all our futures.

To make a donation to this fund, please click here: https://www.facebook.com/donate/594510279025946/

Thank you. And if you cannot access this donation page for any reason, please do get in touch and we can find another way for you to support this valuable research.

Roses after the rain

23 Jul

On 11 July 2021 I posted:

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 see the sea!

21 Jul

On 8 July 2021 I posted:

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.

Parked up

12 Jul

On 3 July 2021 I wrote

Back parked up at the hospital

It’s interesting isn’t it? A year later I remember the journey to and from the hospital as being endlessly sunny. And yet here we have evidence that it was not always so.

I vaguely remember crying in that car, as I watched the rain trickling down the windscreen.

***

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.

Mum’s world grew smaller

12 Jul

On 30 June 2021 I posted:

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.

The operating theatre

10 Jul

On 6 July 2021

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.

The big pink cosmos flower

7 Jul

On 27 June 2021 I wrote:

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.

A roadside picnic

5 Jul

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.

%d bloggers like this: