Selfie with a Beltie

22 Mar

On 18 June 2021 I posted:

There are probably loads of hashtags that those nice folk at the Royal Highland Show would like me to use here. But I didn’t see them. So it’s just me and the NHS rainbow beltie.

#beltie#BeltieGalloway#ProudGallovidian

I could write so much about Mum’s stay at the Dumfries and Galloway Royal Infirmary, but I’m really struggling to find the right words. And to be honest, I am struggling to recall exactly how it was, how things developed. My brain has done the sensible thing and is reluctant to let me re-live the detail of that time.

Looking back at messages between myself and my brothers, in those first days we were eagerly trying to work with the consultant and the other staff in the hospital to establish what we needed to do to get Mum home when it was safe to do so. There was no sense at all of timescale, nor of what criteria they would use to decide when she might be able to go home. There was, though, mention of Mum potentially staying in a cottage hospital for a while to transition between hospital and home. There was a super cottage hospital at Kirkcudbright, just 7 miles from home. But it was closed due to the Covid pandemic. We were already of the view that anything would be better than an orthopaedic ward in a large modern hospital where they seemed not to be set up to cope with a patient’s dementia. But there didn’t seem to be many options for us. In fact, initially, no other options, other than Mum staying at DGRI a bit longer.

Due to Covid, Mum was only allowed two designated visitors (and preferably only one at a time, and only one visit per day, as I recall), so my brother and I took turns, with one of us visiting one day, and the other the following day. The journey took about 45 minutes each way. We were allowed to stay with her for as long as we wanted, and after some negotiation, they conceded that we could spend time with Mum, then take a break downstairs and then return on the same day. Seeing Mum out of her familiar world for the first time in years, was heartbreaking. We can both confirm that it is possible to drive all the way home from the hospital, crying all the way.

Generally we would aim to be there over a mealtime. Mum’s right arm was in a stookie (that’s Scots for a plaster) and so she was unable to use her right hand, nor could she use her arms to push herself out of a chair if she needed to get up (for instance to go to the loo). She also was unable to use her ‘dancing partner’, the 4-wheeled walking frame that she needed to give her enough stability to be mobile.

On my second visit, I passed a nurse in the vast corridor as I walked down to Mum’s room. I asked her how Mum was, and was told that she was ok, but that she wasn’t really hungry, she’d left most of her lunch.

It was true, Mum had left most of her lunch. But not because she wasn’t hungry.

Mum had left most of her lunch because she was unable to eat it. She only had the use of one hand. She could not cut things up, she could not open plastic packets of cheese or of biscuits. She could not spread butter from a small fiddly packet on bread. A few months earlier Mum might have asked for help, or at least told someone of her difficulties. But Mum with dementia was not able to articulate her difficulties. And she did not want to be a bother to anyone, so she stayed silent, she just agreed with the nurse who cheerily enquired if Mum was not hungry after all.

This was not a place where Mum could thrive. I wondered if she could even survive there. She was desperately unhappy and just wanted to get back home.

***

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.

Marmite on toast

17 Mar

On 20 June 2021 I posted:

I’m back after a few days hiatus.

Mum broke her wrist on Tuesday and is still in hospital. The last few days have been filled with journeys to and from hospital, with upsetting visits where it’s clear the pressures on staff mean only the basic care is possible, with packing baskets of delights to improve mum’s stay – you would be amazed how powerfully marmite on toast says ‘I love you’ – with hatching escape plans for mum, with trying to work out what is the next step. Mum wants to be at home. It’s what we all want.

Mum loved marmite on toast. And she was VERY specific about how she liked it.

The toast had to be well cooked (verging on burnt if you ask me, and she would be quite happy if it was properly burnt). Once the toast was cooked, it should be left in the toaster (or in a toast rack if you have one) to cool, so it doesn’t go flabby. Wait till it’s really cold, and you’ll find that it goes nice and crispy. At this stage you can wrap it in a beeswax wrap and pop it in your basket, with a small pot of butter (real butter, not a spread), a jar of marmite and a knife.

Once at the hospital, I’d butter the toast (ensuring the butter was spread evenly and to the very edges, not a single gap of unbuttery toast) and then spread a smearing of marmite across it all. Then cut into either fingers, or tiny bites… to be honest if the toast is crispy enough, as you try to cut it into fingers it will shatter into shards.,

This was Mum’s absolute treat. And early on in her stay we discovered that she was the only person in the hospital eating toast, as no toasters were allowed in the building (a fire hazard evidently). Mum delighted in telling us every day how the consultant had eyed up her toast and that next time she came round Mum would offer to share it with her.

It was becoming clear that Mum could not live at home independently while she had a cast on her arm, but it was far from clear what the ideal solution could be. Staying in this hospital was not it. Individual nurses were kind enough, but it was clear they were over worked, and after over a year of Covid, they were nearly broken. It felt like the system itself was already broken, but more on that another time.

Mum was in a large room on her own, she was unable to move about without help. She was allowed no other visitors apart from my brother and I, and when we were not there, she just sat in her room on her own, listening to the screams of the woman along the corridor, “Help me! Help me! ….. Heeeeelp! Meeeeeeeeeeeeeeeee!” We had taken in some magazines, and I noticed that she only ever looked over the same couple of pages – her eyesight was failing and I suspect that an impact of her dementia was that she couldn’t really retain what she was reading. At home she would have listened to a radio, but we weren’t allowed to bring one in. She was not able to work out how to access the screen on the wall, and the television was of little interest to her anyway.

For the moment, my life took on a new rhythm – one day I would set off to the hospital by mid morning, and would have a coffee with Mum while she had her toast. I’d stay with her while she had lunch, and help her to eat it. Then I would make excuses and leave for a while, usually spending an hour sitting outside at the hospital with a coffee and my embroidery. After my break, I’d head back up to see Mum again for a couple of hours before heading back to Gatehouse, where my brother was. The next day, my brother would do the hospital run, and I would try to do a day’s work, despite my head being all over the place. We cooked good meals for one another, we tried to keep our loved ones up to date on how Mum was, and tried to think about what the future might hold, tried to work out which bits were within our control, or that we could influence. Honestly, we had no idea.

We had a phone call on the second or third evening that Mum was there. It was a nurse from the ward who said that Mum needed to speak to us. Mum was terribly distressed, just wanted to come home, said she needed us to come and pick her up straight away so she could get home. It was heartbreaking. She sort of knew she couldn’t come home, but as much as she knew it, she also did not understand it.

With hindsight, bad as it seemed at the time, I think it was worse than we realised. This was an elderly, vulnerable woman, with dementia, who was not able to articulate her own needs. My brother and I were legally her welfare attorneys, but had to fight to be included in any decisions that were being made. Her arm had needed to be treated, and now there was nothing more that an orthopaedic ward could do for her. And they were unable to cope with her dementia. What she needed was what used to be called a convalescence home… she needed care, and help, but actually what we felt she needed most was the company of friends (or kind strangers would do) and to be reminded that she was loved and that we would do what we could to keep her safe.

We were still fixated on getting Mum home. It was all she wanted too.

***

If you want to catch up on how we got here, this series of posts starts here, with Taking Smock of the Situation.

CAIM

14 Mar

On 17 June 2021 I wrote:

Last year’s #100daysprojectscotland introduced me to the very fabulous @ellieandtherubesterpapercuts and her papercuts of words that have no equivalent in the English language.

I love her work. I love her too, though technically I don’t know her.

I bought some of my favourites last year, including this wee darling – caim. I’ve needed (and found) caim more than ever of late. I hope you find yours.

I was going to apologise to you (and to Ruth) for the appalling quality of the pictures, with that reflection on the cellophane. But actually, I kinda like the reflection in the second image, of my hands, cupping my phone.

***

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.

S L O W

11 Mar

Day 16

On 16 June 2021, the 16th day of my 100 Day Project, I posted one line, and one picture.

Slow progress on this deliciously slow project.

But actually, sometimes making real progress doesn’t seem transformative from one day to the next, but over time, that slow and steady change adds up. So, appreciate the days when not much happens, when it all feels a bit “same as, same as”… on the days when everything changes you’ll be grateful for the resilience you created for yourself on those quieter days.

Everything had changed overnight. Everything for me, but more so for Mum.

***

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 crisis

7 Mar

On day 15 of the 100 Day Project 2021 I posted no updates.

Knitting a sock in A&E

After less than 24 hours at home I got a phone call. Mum had fallen and appeared to have broken her wrist. She was comfortable and an ambulance had been called.

I don’t recall the precise logic, or how we made the decision, but we quickly decided that I should drive straight back down to the hospital at Dumfries, and meet Mum there. Before I had left home we established that it would be a further 4 hours to wait for an ambulance and the recommendation was that we found our own transport if that was possible. So, my brother and sister in law managed to get Mum into their car and met me outside Dumfries and Galloway Royal Infirmary A&E.

In June 2021 the Covid rules meant that only one person could accompany Mum in the hospital. I stayed, believing she would be seen relatively quickly and that I’d be able to get her home later. The naivety! The innocence!

After a long and difficult wait, Mum was admitted into the orthopaedic ward some time after midnight. It was heartbreaking leaving her there, and I was beginning to realise that she would not be able to come home for some time.

I didn’t know then that Mum had spent her last night in her own home. To be honest it was probably best that way. Though nothing felt best at that moment.

***

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.

Dementia is confusing and distressing.. for the person with dementia and those around them. Please help ensure that nobody with dementia goes through it alone. Click on this link to help by making a donation to Alzheimer Scotland.

Thank you, a thousand thank yous.

Happiness has no history

4 Mar

On day 14 of my 100 Days Project in June 2021 I posted:

I’m back home in the Valley for a few days ‘respite’. I hate calling it that, but I also recognise it’s what I need.

The smock is draped over our stable door.. I might get to doing some stitching before bedtime, but if not, I’ll not beat myself up.

Your bonus pic is Mum and Dad just after they moved into the house mum still lives in. Look at their happiness!

You’d like to know how they met wouldn’t you? Well Mum was working in the local gift shop. At Christmas Dad dropped in to the shop to buy cards and gifts, to send to his family back in Germany. He only bought one card that first day. Then came back the next day to buy another. And again the following day.

Reader, they married the following Spring.

I love how happy Mum and Dad look in this picture. To be honest it’s not really how I remember them – they weren’t particularly demonstrative as a couple, and when I think back to childhood I feel a sense of stability and contentment, rather than love or passion. I mean, I always knew I was loved, though it was never actually stated. That came much later. And now it gives me such pleasure to sit with Mum and let her know how loved she is, she always has been.

I saw her today in my lunch hour. It’s less than a year since she was diagnosed, and how she has changed, how her life has changed. I guess we all have, but it is more stark with Mum.

Today she was sad, and she doesn’t know why she is sad, and that makes her distressed. I let her know that we don’t always need a reason to be sad, sometimes we just are. And I also talked about how all her life she’s been happy, and she was able to do things that gave her happiness – painting, reading, gardening, cooking, sculpting, being with friends and family. And now all those things that made her happy aren’t possible any more, so perhaps it’s harder to be happy. I realise that didn’t feel very hopeful, and I did wonder if it meant she will always be sad now. That would break my heart. But honestly, I don’t want to minimise what she is feeling, nor do I want to pretend there is an easy solution. And Mum has always, always claimed that she has never been depressed, so I can only imagine how scary it is for her to feel sad and to not understand why. And I don’t know, perhaps she can’t remember when she was happy? That would be tragic.

Make the most of your happiness if you have it. And tell your loved ones how much they are loved. Fill them up with all that warmth straight from your heart – the feeling will stay with them far longer than the memories of what you had for lunch today.

This series of posts starts here, with Taking Smock of the Situation. Head there if you want to catch up on how we got to this point.

And finally, dementia is confusing and distressing.. for the person with dementia and those around them. My wish is that nobody with dementia should go through it alone. Click on this link if you’d like to support Alzheimer Scotland and to help make this true. Thank you.

Threading a needle

2 Mar

Back in June 2021, on day 13 of the 100 Days Project, life continued quietly. I posted the following:

This bud is not yet how I want it to be, but it’ll get there. I hope.

Time spent quietly stitching while I sat with Mum was peaceful today. My gentle sewing seemed to calm her. I felt calmer too, but also dog tired and in need of new glasses. I remember being horrified that mum needed my help to thread a needle when I was wee. Why couldn’t she do it? How could she not see the eye of that needle? How I wish I had an 11 year old here now to thread my embroidery silks. Or perhaps I should just buy a needle threader?

Your bonus pic today is from the 80s – I’m with Mum on Cardoness Beach. I’m wearing her old leather jacket which I loved till it fell to pieces. How I wish I’d mended it!

I’d been on my own with Mum for the week, and was tired, so very very tired. My working days were interspersed with visits from District Nurses, and with checking to see Mum was ok, occasionally helping her to the loo in between work online meetings. As Mum’s dementia took hold, I found that I was trying to think for her as well as for me, trying to anticipate what she might want or need. It was exhausting. It was clearly exhausting for her too, trying so very hard to be ok. I reassured her so often that we were there to keep her safe, to look after her, and because we loved her. But still she would need that reassurance, most days.

We knew that what we had in place, with carers most mornings and evenings, was not sustainable, but it was impossible to secure more carers – Galloway was at capacity, no-one was available. We had discussed looking at care homes, but Mum had always said that she wanted to stay at home, for as long as she could, that really she wanted to die there. And it was what we wanted too, we couldn’t imagine her surviving anywhere else, and certainly not thriving. We all had very negative views of care homes. I had never actually set foot in one, and it felt like it would be a betrayal of Mum to consider moving her into one. We took each day at a time, and had been putting things in place as and when we recognised what additional support was needed… but each time, as we put the support in place, things moved and changed so rapidly that we already needed to think of the next level of support. I wanted to hire a dementia planner, a bit like a wedding planner, but for an altogether different stage of life.

My brother and sister in law arrived that evening, and the following day I was heading back home for a few days ‘respite’. I hated that term, but knew that I needed it so very badly. I packed some things, mostly just the fisherman’s smock and some work stuff, ready to head home early the next morning.

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.

And finally, dementia is confusing and distressing.. for the person with dementia and those around them. My wish is that nobody with dementia should go through it alone. Click on this link to help make this true. Thank you, a thousand thank yous.

Un-sewing

28 Feb

On day 12 of the 100 Day Challenge, I posted a second picture, with the following text:

I spent a few blissful minutes in the sun this afternoon sewing.

Later I decided to un-sew the detail in the second picture and to try doing that flower bud another way. All that un-sewing felt too much like a metaphor for life at the moment.

I will be aided in my next steps by an embroidery book gifted to me by my grandmother when I was a bairn.

As ever, please click on the link in my bio to learn more about this project and why it means so much to me.

I loved sitting outside in the sunshine, gently stabbing at fabric with my embroidery threads. I wasn’t much enjoying this particular bit of embroidery though – I could not get the threads to look how I wanted them to. But, it was a good reminder that this wasn’t ever going to be a sampler showing perfected examples of lots of different embroidery techniques. It was more of a sketch book, a gentle throwing down of thoughts, of memories, of love. With hindsight, it feels so very filled with gratitude. I really am so incredibly grateful to have the mother that I do, to be her daughter.

Looking back, it wasn’t all embroidery in the sunshine in June 2021.

Mum, a week or two earlier had started to say that she felt useless, that she had nothing to do, she was clearly bored.

As children, during the long summer holidays, if one of us ever uttered the phrase “I’m BORED”, back would come the retort: “Only boring people get bored”. It was such a put down. We might not have known exactly what we wanted to do or be when we grew up, but we were all clear that we did not want to be BORING. To this day, we will all respond with “Only boring people get bored” if ever someone even suggests they might be bored.

Anyway, back to Mum, who was bored. But how to deal with this? We couldn’t just laugh it off and tell her only boring people get bored. Her eyesight had deteriorated to the extent she could not read any more; she was unable to focus on an audio book; she could not manage even relatively simple tasks, such as making soup, she was frail and unable to walk anywhere without the support of her walker (also known as her Dancing Partner). The reality was that she needed help even to go to the loo.

But she could make fruit salad. She sat at the table with a big bowl, a wooden board and a sharp knife, and various bits of pre-prepared fruit (melons already peeled and in slices, nectarines peeled and off their stones, etc). And she set to, cutting everything in tinier and tinier weeny wee chunks – so very unlike the big chunky fruit salads of our earlier years. I added a basil syrup (as I said to a friend, that supermarket-bought basil plant needed to be used) and we ate fruit salad. At every single meal.

We were also noticing how much weight mum had lost; she needed new trousers, smaller ones that wouldn’t fall down when she stood up – there were enough other hazards in her life. So I ordered new trousers online, and I noted on the 12th June that as well as a courier delivery of trousers, we also had a delivery of a VERY LARGE box of disposable pants from Boots. This was not on my list of Things To Do in 2021, but here we were.

And we had delicious fruit salad.

This series of posts starts here, with Taking Smock of the Situation. Head there if you want to catch up on how we got to this point.

And finally, dementia is confusing and distressing.. for the person with dementia and those around them. My wish is that nobody with dementia should go through it alone. Click on this link to help make this true. Thank you.

Reasons various

23 Feb

On day 11 of the 100 Day Challenge, I didn’t post anything. On Day 12, I posted the following:

Didn’t get to this yesterday for reasons various…

I wasn’t keeping a diary at the time, and so I don’t know exactly what the “reasons various” were. But in the lead up to this, several days previously, I had sent a message saying the following:

Mum was up and about again last night… at 10pm I noticed her on the camera and went across. She wanted to check her diary to see what was happening (gas boiler man coming this morning, so she probably had a slight memory of this being planned). She then peeped round the door into the sitting room at 1.30 and then withdrew again (probably going for a pee). She’s just opened the curtains now so I think will be tired and more confused through the day today.

It was just before 7am, so that was me up and at it for the day.

The following evening I wrote:

Not much change really to be honest. J is here too at the moment which is certainly much more manage-able for both of us and I think better for Mum too. She’s been enjoying having us read excerpts of her memoirs to her this evening. I’m hoping this tired her out.

And then, this gap of a few days… and on the morning of the 12th, when I posted about “reasons various”, the following:

Mum’s probably much worse than when you last saw her. It’s hard to notice how much deterioration when you’re just dealing with it every day. She wanders at night, though not every night, and needs gentle persuasion and physical help to get back to bed. She honestly can do little for herself unaided now, though still has a healthy appetite and manages to eat. Her short term memory has gone. She is still though very much herself and is coping amazingly, such an inspiration.

Reading this back, I can immediately recall how exhausted we were, how our complete focus was on what was best for Mum. But we were also really aware that in reality we didn’t really know what was best for her. We had been trying to put additional support in place, to help her get dressed in the morning and getting her ready for bed in the evening. But what she really needed was someone with her 24 hours, partly to try to keep her safe, and to help her when she needed to go to the loo, but also because she clearly benefited from companionship.

We had set up a small camera in the sitting room, to help us keep an eye on her when we weren’t there in the room with her. I was initially nervous about this, worrying that she might think we were spying, but no, she was very certain that she could turn it on and off (she couldn’t) and she rather liked it; she understood that it was for her benefit, so we could come when she needed us.

What the camera had shown us though, was that when Mum was having her ‘quiet time’ after lunch with her feet up (this was on the advice of the superb District Nurses, to try to reduce the water retention in her legs) in reality she was bobbing back and forth, up and down, grabbing her walking frame and beetling off out of sight (probably to the loo again) every 10 minutes or so. So, by the 12th June, I was spending more and more time with her (and helping her in the loo), and less and less productive time on my laptop for work.

The restrictions as a result of the Covid pandemic had allowed us all to work from home. But I was now finding that juggling work and caring responsibilities was nigh on impossible. I felt like I was failing at both things. I had considered several times if I should see my doctor and ask for a fit note, to be signed off work for a few weeks.

The emotional toll of trying to keep Mum safe, and always knowing we were probably not doing quite enough had worn us out. I planned to head home for a week in a few days’ time. I hated to admit it, but I needed a break, needed ‘respite’.

But, we were approaching midsummer in Galloway, and Mum’s garden was a solace – the honeysuckle was billowing over the gable end of the house and everything was lush and green. I yearned to go down to the sea, I knew it would restore me. But there were never any hours in the day when this was possible. The sea was there though, waiting for me.

Dementia is confusing.. for the person with dementia and those around them. My wish is that nobody with dementia should go through it alone. Click on this link to help make this true. Thank you.

And if you want to start at the beginning of this series of posts, head here, to Taking Smock of the Situation, where it all began.

Starting anew again

21 Feb

10 June 2021, day 10 of the 100 Day Project embroidering Mum’s well-worn smock I posted the following words:

I’m sitting here quietly over a cup of coffee with Mum, while I organise the next bit of embroidery.

This is a picture she did last summer before she stopped drawing or painting. She took part in the 100 days project, doing a painting a day .. but just stopped at about day 83. And could not be persuaded to do any more. With hindsight I wonder if her brain was already deteriorating?

It was around Christmas when she said a few things that sent me down the rabbit hole researching early stages of dementia. The Alzheimer Scotland website was hugely helpful. Nowadays Mum won’t draw any more, but she enjoys looking at her pictures from last year. I’ll enjoy transforming them into embroidery.

That all seems so long ago now, and I find it hard to really recall what a vibrant and creative person Mum was before dementia. Everyone’s dementia is different, but from what I know, it seems like it has developed quite quickly with Mum. It felt as though she was desperately trying to keep it at bay for a while (we’ll never actually know how long, or know how she was during that long year of 2020 when we were hardly able to spend any time with her), and during this period it was exhausting for her. She would sleep a lot in the afternoons, and went to bed really early at night. But then, once she accepted that she had dementia, perhaps as soon as she had the diagnosis, it was like the flood gates opened and she changed almost daily. Each day felt like a huge loss to me, like bits of Mum were disappearing. It took me many months to get to a point where each day I could accept her for who she was that day, without being sad about what was already gone, and what else we might lose.

Back in early 2021 when I first was minding her, we established a daily routine which started with me peeping out the window to see when she drew back the sitting room curtains to indicate she was up and awake, and finished with her heading off to bed at about 9pm. I spent most of my working hours across the road, at my laptop, and all mealtimes with her, with lunch being The Main Meal of the Day. Initially Mum could still manage making lunch (though often it involved something I had batch cooked at the weekend. But by early February, it was clear she was struggling with this seemingly simple task she had done every day of her life for about 70 years. She has a Rayburn, which can be such a forgiving way to cook – but it was more often that I’d come through for lunch to find a pan of VERY salty over cooked cabbage, and the fish pie (or whatever) still in the fridge.

Making lunch, even if it is just heating up pre-prepared dishes, consists of several discrete tasks, such as:

  • put plates in the bottom oven to warm up
  • take the pie (or whatever) out of the fridge and put it in the top of the top oven where it’s hottest
  • get the cabbage out of the fridge
  • cut the cabbage up
  • find a pan
  • put some water in the pan
  • put a pinch of salt into the pan
  • put the cut up cabbage into the pan
  • put the pan on the hot plate on the Rayburn
  • replace the rest of the cabbage in the fridge
  • keep an eye on the cabbage so it doesn’t overcook.

It became clear that Mum could only manage one task at a time. And once that task was complete, there was no guarantee that the next task would happen. There was a disconnect in pulling things together, and an inability to work through a number of connected tasks to make up a whole. I just wanted to protect her and look after her, so I told her not to worry, and gradually it was accepted that I would make lunch each day. We tried some other options. I desperately wanted Mum still to have some agency, so she could feel like she was still managing and independent – we discussed lunch plans over breakfast and I wrote a simple list for her; I would nip through at coffee time to ‘check in’ and see how things were going. But essentially, Mum no longer had the capacity to prepare lunch independently.

She LOVED her food still though. It was one of the few pleasures she could still enjoy in life, and so I strived to make her meals as delicious and nutritious as possible. I developed techniques that allowed me to maximise my time at work, and still produce a tasty two (or sometimes three) course meal each lunch time. I considered writing a cookbook for carers, or at least sharing my tips on this blog. But none of that happened. Life happened. And that was fine.

Do get in touch if you have anything to share, about getting old, about caring for others, about embroidery. Really about anything.

And I’d be very grateful if you would consider making a donation to Alzheimer Scotland. It might be the lifeline that someone else needs when they are trying to make sense of a world that seems to have developed a glitch.

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