‘Our Place’; an alternative reality

Posted on July 4, 2025 by thepogblog

I used to think dementia was very much about people forgetting. Words, places, people and more.

We realised a good while back that for Mum it’s also about some sort of alternative reality that is based on nothing other than what is in her head.

This week she thought it would be nice for us to visit their ‘new place’.

And while this is rather a lovely alternative reality, sometimes they are not. Sometimes she will tell one of us how horrible another is to her (and all of us have been the ‘horrible one’ at some point, which is how we can be so entirely sure that it’s not true). And we have to let people know that while she is very convincing at talking about things, they often need to be taken with a pinch of salt.

There’s a lot more plate spinning to dementia than I’d thought, and this is one of the smaller plates. Practically a saucer 😬

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Reflections

Posted on July 3, 2025 by thepogblog

It turns out that there is so much about demential that you don’t know you don’t know.

Like that moment when your Mum doesn’t seem to recognise her own reflection.

We’d been looking at videos and photos and I realised how much has changed with Mum in the last year, so I turned the camera and record some of the now, as I’d not done a video in a while. I think mum thought we were still looking at old photos.

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Corned Beef Hash pie

Posted on June 27, 2025 by thepogblog

Tuesday this week was…well, I think it’s best to pretend that it didn’t happen.

But there was one small success.  I invented the Corned Beef Hash Pie (maybe not actually invented, but I’d not heard of it and definitely not baked it before).  And unlike many of my ‘made up in my head’ attempts, it was surprisingly well received.  This was a particular achievement as I’m vegetarian, so couldn’t do any taste testing and had no clue if it was actually edible.

So, should you need to whip up an old school meal for people who utterly believe that the only vegetables required in life are chips and the cocoa in chocolate, and who therefore tend not to add anything other than the key part of a meal to their plate, here’s what you do:

  • Line a pie dish with 2/3 pack of puff pastry and pop in your baking beans, blind cook it at 200 for about 10 mins, tip the baking beans out, prick the bottom a few times with a fork to stop any puffing and pop it back in for 10 more minutes.
  • Fry up a chopped onion and carrot, throw in the corned beef and break it up.
  • Add some splashes of Worcestershire sauce, a squeeze of tomato puree and an oxo cube dissolved into a bit of boiling water.
  • Let it all bubble a bit.
  • Throw in a tin of beans.
  • (No need for salt if your beans are not the salt free ones and no need for pepper if your dad insists that ‘the flavour is too strong’.)
  • Give it a stir.
  • Spoon the filling into the pastry covered pie dish.
  • Top with the rest of the puff pastry.  (Stick the cooked bit together with the uncooked bit using a bit of milk and a sprinkling of creativity)
  • Poke a knife through the top to let out the steam (is that why we do that?)
  • Pop it back in the oven for 20-ish minutes.

No need to serve with anything as all the sides are inside 🙂

And that was that.

It was also Stepson 2’s Prom.  Mr R took him and his mates in style, dressed as a chauffeur.   And it was our third wedding anniversary.  We’d planed a Top of the World picnic after chauffeur duties were complete, but the weather had other ideas so we had our picnic in our kitchen instead.  I’ll leave you with those photos as I think they are marginally more interesting than one of a tin of corned beef…

.

Posted in Cooking, COPD, dementia, family, looking after Mum, memory, Pog Life, step mum, stroke, Tuesday, wedding | Tagged , , | 4 Comments

A few of the questions I have from the last few weeks *

Posted on June 20, 2025 by thepogblog

*Some I’ve found answers for, some are hypothetical and some…we’ll just never know. 🤷‍♀️

  • Why do you have to fight for a medical person to see your Dad and then three turn up at once?  (Ok, three in 8 days, but you get the idea) Buses and all that.
  • Why don’t people understand that juggling appointments can be tricky when you have two parents with complex health needs, your own family, a business to run and don’t live next door?

(I was asked ‘Do you actually want us to see your Dad?’ when I said that we couldn’t do the next two weeks due to other appointments)

  • Why does only one medical person I’ve asked the very direct question: ‘But if we call an ambulance, and he has a ReSPECT form asking not to go to hospital in any circumstances, wont we be wasting everyones time?’ to, know the actual answer?

(The actual answer is that you call 999 , ask them to refer to the patients ReSPECT form which is on the system, and request that the Home Treatment Team to come out urgently, not the paramedics in an ambulance.)

  • Why is liquid morphine dispensed in a bottle with no way to measure dosage when you are told that accurate dosage is really quite important?

(Syringes may or may not have arrived from Amazon yesterday.  Sister 1 is arriving with an old Calpol syringe today to cover all bases and be on standby to call 999 should the first dose go tits up.  Sister 1 has also been  briefed on the answer above verbally and in writing)

  • Why, when you ask if a shop has wheel chair access, so they think that ‘that door has a ramp’ is a helpful answer when there is a the small issue of a step at the top of the ramp?  Especially when it’s too big for even Sister 2 to bump the wheel chair over, and she is strong.

 

  • Why did Mum insist on calling me ‘Audrey’ last Tuesday morning?  She’s never known an Audrey as far as we know.

 

  • And why did we move so fast to me being ‘Shirley’? (At least she knows one of them, even is she is as dainty as I am sturdy…)

 

  • Why did Mum hide her boob in the desk in her room? (False one after mastectomy decades ago.  We’ve not got as far as attempting to hid the attached one. Yet.)

 

  • Why, when I buy the same number of bananas each week do we sometimes have half left on Friday morning and sometimes the whole lot has gone by mid afternoon on a Tuesday?

 

  • How are (mostly) Mr R and Stepson 2 getting through 2kg of Alpen a week?…

 

  • …And how is our toilet still intact?

 

  • Why are people who use purple poo bags more likely to leave their filled bags anywhere that isn’t a poo bin than those with other coloured bags?

 

  • Why does my brain crank up into ‘let’s think through All The Things and all the scenarios of All The Things, and all the things you need to do to address each scenario in All The Things’ as soon as I get into bed, more than ready to sleep?

 

  • Do dogs ever have busy minds?

(I suspect not):

Posted in COPD, dementia, dogs, family, looking after Mum, memory, Pog Life, stroke, Tuesday | Tagged , | Leave a comment

ID bracelets

Posted on June 12, 2025 by thepogblog

This one is a practical one that might help someone else. We kicked ourselves for not thinking of it as it’s pretty bloomin’ obvious, but it took my father-in-law (thanks Pops!) to suggest it.

Pops had seen ID bracelets for people with QR codes that could be scanned so that their details could be accessed and the wearer helped appropriately.

Mum and Dad live in what I suspect might be the last village in the UK to have no internet reception outside of houses with wifi, so a QR code wouldn’t work too close to home.  But a standard ID bracelet would.

Mum stopped going for regular walks last year, but has made an escape attempt a couple of times recently.  She did remember how to get to her neighbours house, who returned her (it’s not a standard house next door situation) but there will be a time that she can’t remember which way to walk to get to the gate and up the drive. Dad can’t follow her because of his breathing.  So we needed a ‘if found please return this bear’ type of solution.

I thought it also might be easier for Dad (and Royal Mail) if he also had something similar rather than the yellow card he’s been carrying when he goes out.

So I looked up ID bracelets and found this site. There are many, many options though (although weirdly many are based in the US or Canada).

I bought this one for Mum that looked and felt like her watch (that she can’t read but likes to wear) and this one for Dad as his would be needed if he had an medical emergency and I figured it would be easy to spot.

We had big challenges resizing them although – like the initial idea – it was pretty obvious once you got the hang of it.

Mum’s was really hard to do up and undo, which was great as I wanted her to be wearing it 24 hours a day.  Obviously the one person who finds it incredibly easy to undo is…Mum 🤦🏼‍♀️. But I guess wearing it half the time is better than none of the time.

Both bracelets have their name, Dementia / COPD and mine, Sister 1 ad Sister 2’s phone numbers as ICE (In Case of Emergency) contacts.

They are both quite proud:

Posted in COPD, dementia, looking after Mum, memory, muddled life, muddled life guide, Muddled Life Tip, stroke | Tagged , | Leave a comment

The Leaf Blower Extraordinaire Tuesday

Posted on June 6, 2025 by thepogblog

The new jobs are coming thick and fast now.

This Tuesday I became Fixer of Bracelets (I’ll do another post on that as it’s a useful one and deserves a spot on Muddled Life Resources) and Leaf Blower Extraordinaire***.

Mum and Dad have a lovely, very mature garden that they have put years of effort into.  It’s still gorgeous (if a little…shall we say ‘wild’), but it does need a little help if it’s going to look good if summer comes back / arrives.  It’s surrounded by woodland and one thing I’ve not got on top of is clearing the blimin’ leaves.  All the easy bits are complete, but they are still thick on most of the flower beds.  And I can only assume that once I clear one part , the leaves I’ve not picked up multiply and we’re back to square one.  There’s obviously no more falling so they are either procreating or hiding somewhere, waiting for a clear patch to have a lie down on.

In my quest to rid the garden of leaves I put a request out to my circuits class this week to see if anyone had a leaf blower I could borrow.  And one kind soul did, so off I trotted on Tuesday with this thing that looked more like a weapon to be used in war than a gardening implement, filling the boot:

It was like a jigsaw puzzle getting the Tesco shop and the small pharmacy I picked up for Mum and Dad on the way around that…

Obviously, it rained Tuesday morning.  And Tuesday afternoon.  And Although Dad warned me it wouldn’t work well with wet leaves I gave it a try.  It didn’t work well with wet leaves.  I will hope for better weather next week.

I caught sight of my reflection in Mum and Dad’s patio doors at one point.  With the shoulder strap slung across me, my Weapon of Leaf Destruction in both hands, my hole-y gardening leggings and paint covered sweatshirt on I looked…like a menopausal Lara Croft, who had frankly, let herself go. 🤦🏼‍♀️

Luckily for you, I did not do a selfie.

I did capture this chap though, who despite the loudness and movement caused by the Weapon of Leaf Destruction, followed me around most of the time I was out there 🙂

***not quite, but just you wait til next week!

Posted in COPD, dementia, family, gardening, looking after Mum, Pog Life, Tuesday | Tagged , , | Leave a comment

Introducing…:Ray

Posted on June 2, 2025 by thepogblog

Sometimes I think I take after my Dad in that I don’t really like people.

And then I remember that I am also utterly fascinated by people and their lives, and that there are some people I could listen to for hours.

There are of course, some people whose mouths I’d like to stuff with sponge so that they can’t actually utter another word.  I think that’s the Dad part.

Sometimes people stop and chat to me and Mr R when we are out walking together, but this weekend I noticed something really interesting:  Alone (with Percy on guard, obviously), other walkers chat to you more.  It’s a weird thing because in day to day life – at the supermarket say, or walking through a town – I feel utterly invisible.  But on footpaths and through fields, people share a few words, or sometimes even have a conversation.

This weekend I met the two men (one runner, one cyclist) who convinced me I’d be fine walking through a field of cows with Percy and if not, they would come to my aid.  I chatted to a bloke running with six dogs on his harness.  None were his.  He doesn’t have a dog as he lives in a one bed flat with his wife, but he wanted a career change so left his corporate job to work for a dog running service and takes out dogs twice a day, and is loving every minute.

And then I met Ray.  And just typing his name makes my heart lift.  Ray was walking through a field of buttercups that Percy was doing mad circles in, having the time of his life. ‘He’s happy’, said Ray to me.

We stopped and watched the chaos monkey do another lap, and Ray told me that he really misses his dog, Benji who he recently lost.  He’d tried everything he could to get another dog, but nobody would let him.

I need to show you the photo I took of Ray at this point.  He let me take it – I said it would go on my blog but not many people would see it.  He said it was fine as long as he didn’t see it next week in the Sunday Times.  I think we can consider ourselves safe there…

So, this is Ray:

He’d ‘only done 1.5 hours of walking so far’ and from what he said I estimated he had at least another 30 minutes to get home.  He goes out every day to walk the hills.  Doesn’t have a TV; would rather be active.  He proposed to his darling wife Kathleen on a very muddy Woolstonbury Hill over 50 years ago.  He lost her 7 years ago.  He misses her every day.  We sttod and admired the hill.  Top of the world for him too.

Ray’s career was as a professional diver.  I asked what that meant.  He said insurance and things like that.  And that when fancy boats sunk, he was employed to go and fetch the valuables before anyone else got them.  He said he also worked in the Thames too though, and that was not quite as glamourous.

He told me that his nurse wants him to talk to her husband to get him out from in front of the TV and be active like him.  He has the nurse to help with the ‘outside bladder’ he has strapped to his leg because of the bladder cancer.  (He showed me, bless him).  He had cancer in his jaw too, but they took that out and his teeth, so he has no teeth on that side of his face but he’s getting implants soon as the jaw is almost strong enough to take them now.

It was a joy to talk to Ray; so full of life and loving being active.  His sadness over no longer having Kathleen by his side was almost tangible and I felt sad he could not have a new four-legged friend.  I asked why he couldn’t maybe have an older dog, and he said that ultimately it was because of his age.  And then this vibrant man, who walks the hills every day for a few hours, who is on a complex cancer journey, who is full of grief but also light and hope, stunned me.

Ladies and gentlemen, I give you Ray: NINETY years young.

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I read a map 😁 (And got it right!)

Posted on June 1, 2025 by thepogblog

When I was little I hated walking.  If Mum and Dad uttered the dreaded ‘we’re going for a walk’ I pretty much instantaneously developed a tummy ache. I’m not sure why I bothered as I’m pretty sure the response was always that ‘a nice walk would make it better…’

It wasn’t just as a child either.  I remember a Boxing Day walk as an adult where my sisters packed their pockets with Celebrations chocolates to entice me around, the way you’d get a reluctant dog to follow you with treats.  And there was a holiday in my 30’s with two friends who loved walking, so I had no choice, but did insist that I would only walk if we finished at a pub or somewhere I could have a cream tea.  I just didn’t see the point of walking for walkings sake.  If there was a reason, that was fine, but otherwise…nah.

It was slightly ironic; my maiden name was ‘Walker’, and I did not get the whole walking thing.

But now – no longer a Walker – I seem to have become a walker.

It might have been reading ‘The Salt Path’.  It might have been that the weather changed just enough for it to be a pleasure, it might be my age, or it might be because all the stars all suddenly aligned, but suddenly the thing that used to give me tummy ache is the thing that lets the knots inside loosen and my head to (mostly) empty of the thoughts that usually circle and circle and circle and circle….

For the last few weekends Mr R and I have packed into a rucksack a round of banana and peanut butter sandwiches (him) and banana and almond butter sandwiches (me), two cheese and pickle rolls, a pack of bourbon biscuits and an apple each (which we pretty much always bring back, slightly bruised).  One small flask of tea to share, three bottles of water, Percy’s walking water bowl and two cans of cider.  Himself has mapped a route on his OS map app, we’ve put on the Percy hiking harnesses and off we’ve gone – at least 10 miles and usually including at least one big hill (top of the world!).  And I have (mostly) loved every minute.

We’ve downloaded a plant recognition app and a bird call app and we’re trying to educate ourselves between our breakfast and lunch stops.  And although it’s taken a good few decades to get here; I’m rather proud of this new part of me.

And today I am especially proud.  Because Mr R is away…and I did it anyway.  I am notoriously bad at map reading (not sure if I mentioned that time I drove from Somerset to Cornwall rather than to Kent?  Right road; wrong direction).  Even last week with Mr R supervising I took us the wrong way twice and had an actual paddy with the app because it was just stupid. So yesterday Percy and I did a 13.5 km loop from home that I mostly knew, but followed the map to make sure I was doing it right.  There was only one slightly awkward moment when I asked some scouts if they were ok with their maps and directions…and then had to backtrack as I’d read mine wrong and missed the turn….

And today.  Today Percy and I got up at 6am ready for a 6.30am departure only to discover ‘all trains will be replaced with a replacement bus until 8.30am’.  So we delayed things a bit, and then we:

Got the bus:

Got the train:

 

And walked back – only 12.5 km, but the first half was entirely new to me…and we didn’t get lost!

And I don’t know if it was the fact that I had to map read and convince Percy to behave like a normal dog on his harness rather than some sort of strong man hefting a lorry along with all his might.  Or whether it was having breakfast in a lovely quiet graveyard of a church so different to others that it has a toilet to use and tea, coffee and squash to help yourself to.  Or having lunch looking at the Chattri, which is a really special place to be. Or whether it’s because I finally got to see a woodpecker as it flew at head height across my path.  But my head was only interested in what was there in that minute.  And that was blimin’ lovely.

Lovely, that was, until the critical care nurse called (yes, on a Sunday!) about  Mum and Dad.  But frankly, if you have to have those sorts of conversations, having them sitting on a hill, looking across the South Downs at cows and sheep while you sip your cider and eat another bourbon, isn’t a bad option.

So yesterday and today was Epic Walk 4 & 5.  There may be a plan brewing.  It might be a terrible plan. But one thing the blog has taught me is that terrible plans do at least make blog posts.  And there might be a few walking exploits in the lead up too, as did I tell you about who I met today…?  I’ll make that a post for another day 🙂

Posted in hiking, hiking with a dog, walking | Tagged , , , , , , , | 1 Comment

Where’s the grown up, please?

Posted on May 30, 2025 by thepogblog

This week we had a bonus visit as Sister 1 and 2 went on holiday.

So Mr R came down at the weekend and was the muscle on Mums outing, and while we did avoid the kicker argument (thanks to dad hiding all but one pair at a time), we didn’t avoid the toilet argument:

‘Mum, can you go for a wee before we go out?’

‘I don’t need a wee.’

‘Last time we went out we had to rush back because you needed a wee, so please could you go before we leave the house?’ (Mum wont use public toilets)

<much harrumphing and sighing>

‘I’ve been.’

‘You haven’t, you didn’t go to the bathroom’

‘I went in THERE’ <pointing at the lounge>

‘That’s the lounge.  There isn’t a toilet in there.’

‘I meant in THERE!’ <Pointing at her bedroom>

‘That’s your bedroom.  There isn’t a toilet in there.  The bathroom is here…could you go there and do a wee please?’

<Enormous amounts of harrumphing and sighing>

Luckily, the excitement of going down hill in a wheelchair distracted her from her crossness and teacakes were eaten by all.

Meanwhile, I got another new job.  I’m not sure how I feel about this.  It was as a result of having a conversation with Dad’s doctor where I got very frustrated as the respiratory nurse who used to visit him on a regular basis has stopped visiting as he has ‘had the maximum number of sessions’ and the hospice have taken him off their books as he ‘has not needed to access the services’.  I explained to the GP that this leaves me and my sisters, with no medical qualifications between us – other than a first aid certificate, which doesn’t quite cut it with advanced COPD – to decide at what point dad’s breathing is so bad additional help is needed.  Dad hates a fuss though, so that makes it even more difficult to call anyone as he will argue against it.

So the doctor gave me and my sisters our new job:

We now have to monitor Dad’s blood pressure, heart rate and O2 and if they go down, we shout.  I’m not sure how much they should go down by or at the moment quite who we shout to, as a series of phone calls to various ‘support’ has ultimately left me with ‘call 111 if you’re concerned, or 999 in an emergency’ which doesn’t feel quite right on a lot of levels.  I’m also now doubly confused as one of Dad’s blood pressure numbers seems to have gone down and the other up, so what on earth does that mean?  Quiet shouting,  loud calmness or a total inability to use the blood pressure machine?

Luckily Sister 1 and 2 are back from holiday today and they can do some measuring to confirm…something.  Sometimes I feel like I need an adult to help us.  Then I remember… 😬

Posted in COPD, dementia, family, looking after Mum, memory, stroke, Tuesday | Tagged , , | Leave a comment

But it *is* a tortoise

Posted on May 23, 2025 by thepogblog

The other week, as I plodded through the woods, I saw a tortoise.

It’s probably important to note at this point that I don’t run with my glasses on, and as a result it’s a little like looking at the word through a lens that has been lightly smeared in Vaseline.

I took a photo of the tortoise from a distance for context:

And approached, wondering how I could best transport it with two running harnesses and a lead.  It could be a marginally slower trip home than usual.  But it tuned out it wasn’t a tortoise…it was – as I later found out – a ‘burr’.  A Burr is a growth on a tree formed by stress.  No wonder I felt an automatic affinity with it.

But I left my tortoise there.

And the next day I was so relieved to see it again, I hid it so nobody would take it and I could check in on it on my plods.

By the time we’d moved on a few days I’d got a bit obsessive and as I approached this time, I decided tortoise or not, it was coming home with me.  I had 4km left…through the woods, an open field, across a couple of main roads, over a bridge , through a nature reserve and down my road.  I wasn’t sure if I might be stealing.  So – having watched a fair few episodes of ‘Caught on Camera’ and therefore having learned from the best -, I concealed tortoise down my top.

It was a bit conspicuous.  So I decided to carry him and if I passed anyone I pretended I was using him as a weight to enhance my plod. I mostly got away with that which was a good thing as the one person who did stop me and heard all of the above suggested that if I’d not started, I should go home and have a couple of drinks…

Anyway, we made it. Mr R and Stepson 2 didn’t seem to know what to make of it, but I just got on with giving tortoise a scrub as I had a plan…

…And this was my plan.  Meet our new pet, Gwynn:

I’ll tell you why ‘Gwyn’ in a post another day.  that’s probably enough for now 🙂

Happy Friday 😁

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