A bit of honesty

Dear people in my computer,

I think I might have fallen into that social media trap a bit.  You know, the one where you make life look a bit more smiley than it is.  It’s tricky, because nobody wants to read unsmiley or ranty stuff all the time, but there should probably be a balance or I’m not being terribly honest which doesn’t really help anyone.

So, I hold my hands up and admit that I have glossed.   And for today at least, I will not.

Last week when I went to visit Mum, she was really lovely to me – she greeted me with a smile and got out of her chair ready to go somewhere together…until a member of staff corrected her when she called me Sister 2, and told Mum I was actually Pog.  Mum was not happy to discover this (me being her least favourite daughter 90% of the time) and refused to chat very much on our outside escapade, or over our coffee and fruit.

When I left, she wouldn’t look at me, let alone say goodbye (although the Lovely Phylis who sits next to her blew me a kiss, which still makes me smile.) It was a bit tough, but it wasn’t the end of the world.

This week I arrived as Mum was finishing a coffee in the lounge. I asked if she’d like to come with me to put the flowers that I’d bought her in a vase in her room and drop off the toiletries I’d picked up for her at Tesco with Dads shopping.

‘Where are the others?’ she asked, looking around me

‘It’s just me, Mum’

‘It’s not worth the effort of going to my room if it’s just you’ she replied.

I said that was ok, I’d go and pop the things in her room on my own, but that made her cross, so I found her walker and we made slow progress.  We had a small dispute over which direction her room was in, and I think this compounded the grumpiness that I was disappointingly just me.

When we got to her room Mum refused to sit down.

Then she wanted to sit down, but didn’t want to be guided into the chair.  And despite me using my arms and legs and voice to try to help, she did the sitting bit too early and slowly slid to the floor.

I got her back up, sitting in the chair and watched – almost in awe – as she lowered herself to the ground again and started shouting for help.

I got her back up again, helped her hold her walker and suggested we go back to the lounge as this was obviously not working out.

We passed a member of staff and mum smiled brightly and told them she would see them soon.  We passed another resident in their room and she did that happy smile and a wave.

We were part way to the lounge when Mum stopped,  looked at me and told me that she didn’t like me, didn’t want me there, had lots of other people who would come and visit so actually she didn’t even need me.

She then propelled her walker down the hallway, looked at the walker, at me and asked me what I was going to do about that.  As the woman clearly had the strength to get herself from a chair to the floor, do a fair bit of shouting and push away the support I’d thought she needed to walk, I suggested she go and get it.  Which she did (using the wall rails as support…I’m not suggesting there was some sort of miracle here 😬).

And then a member of staff walked towards us and Mum burst into tears and told them I was being so, so horrible to her.  I gave up.  I asked the member of staff to look after her and left.

And that is the reality of how Mum can be.  Not always.  Sometimes she can be lovely, or just a bit tricky.  But sometimes she can be nasty.

She is always absolutely lovely to care staff.  She is always absolutely lovely to friends.  She knows the difference between us and the ones she is always nice to (Sister 1 and 2 have suggested we get tunics like the care staff for when we visit as she might be nicer to us if she doesn’t realise we are her daughters).  And while I think we’d all prefer it was us that got the tough bits, that’s the bit that’s hardest to deal with.

So, top tips for anyone not in this situation right now (and recognising that this is based entirely on my own experience, thoughts and feelings – I’m obviously not an actual expert):

  • Do not tell the family of someone with dementia that it is a terrible disease, and they don’t mean any nastiness; they just can’t help it.  Please see above.
  • Do not tell the family that they are nasty to you because you are ‘safe’ to let out those feelings to as though that makes it ok.
  • Know that the only thing harder than managing this situation is the expectation of others that as it is a disease, it is reasonable to put up with behaviour that in any other circumstance would not be tolerated.
  • Please know that even if ‘it’s not them, it’s the disease’, it is really, really hard to keep going back into that situation, while simultaneously taking a huge amount of time trying to work out the admin and the finances and the medical things to make sure that person is cared for in the best possible way, even while they tell everyone how horrible you are.

And, if you are in a similar situation reading this (and again,  recognising that this is based entirely on my own experience, thoughts and feelings – I’m obviously not an actual expert):

  • I see you.
  • The shit days are shit.
  • Some of the good days contain a fair bit of shit too.
  • It’s ok to walk away.
  • If the person is in their or your home, it is ok to insist (not ask) on more care support to give you more space.
  • If the person is in a care home, it’s ok not to visit for a while (I won’t be).
  • And I’m sorry that you’re having this experience too.

And that is my bit of honesty.  Normal smiles will resume shortly 🙂

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

The kindness of strangers. And the joy of a hedgecutter.

When was the last time you said something lovely to a total stranger?

Since July I’ve been trying to get Mum and Dad’s much loved garden back under control so Dad has a nice space to look out at.  The garden is bordered by hedges, which are bordered by roads.  I did the insides…but the outsides needed to be attacked.  And I rather like the hedge cutter 😈.  What I am less keen on is the speed that rather large cars and lorries zoom up the road which doesn’t have a pavement . And also ladders.  I get really panicky at the top of ladder height…

So I created a hi vis situation with a spare ladder and cones:

Grabbed dads hedge cutter:

And two weeks ago I did one side:

And this week I did (most) of the end (my arms weren’t quite long enough):

And then the other side:

And while I absolutely wanted to show off my (imperfect) handiwork, and proudly tell you that I didn’t fall of the ladder (quite) and I didn’t get run over – even once.  In fact I only fell over once, and luckily I fell into the basket of leaves that I’d just dropped so I had a soft landing…

…What I really wanted to tell you was this:  Lots and lots of people drove past.  Some were visibly annoyed that they had to slow down on what can be a very fast road (although I did end up on waving terms with the farmer doing repeated trips on his tractor who was also slowing down a fair few people).  And then one lady stopped.  I was worried I was about to get told off for blocking the road, but she leant over the passenger seat while her small dog sitting there snoofed in my direction, and told me what I great job I was doing.  She told me she was a gardener and her husband was moving from decorating to hedge cutting and she thought I’d done really well.  She said she didn’t think she’d have been brave enough to do the reaching at the top of the ladder I’d done on her own.  It almost made my eyes leak.

My Dad is hugely appreciative of what I have done as he did it for many years and knows the effort involved.  It meant such a lot though, that a stranger thought to stop and tell me I’d done well.  It’s like when a stranger tells you they like your boots.  It’s lovely hearing it from a friend or Mr R, but it takes on a bit more when someone thinks enough of your boots or your hedge cutting to stop and tell you.  It creates a different sort of smile inside.

So, I wonder if maybe the next time you notice something positive about a stranger, you’ll tell them and give them that lovely smile inside?  🙂

Posted in gardening, Tuesday | Tagged , , , , , , , , | 2 Comments

And the secret weapon is…

Dear People in my computer:

In that last post about Pog’s Chaotic Kitchen Care, I might have got a bit cocky.  I thought we’d sorted Dad’s weight, he was on the up and I could cross that off my list.

But anyone is any sort of similar situation to this knows that these things are not linear.  They are rollercoasters.  That are on fire.  And heading off the side of a cliff.  With absolutely no brakes.  And Dad demonstrated this brilliantly by struggling through another boat of poorliness that left him unable to eat much and took him back down to just 8stone 10.

BUT we found a secret weapon!  Mr R is training to be a nutritionalist.  Not because he wants to be a nutritionalist you understand, that would be far too obvious.  No, he’s training because he does big running races (50-100 mile types) and wants to properly understand how to fuel his body, so thought he’d learn for himself.  And recently in his quest he completed a module on the elderly, and discovered the secret weapon.  Powdered milk.

Who’d have thunk it?

You see, older people need more protein to maintain their muscles and they need extra vitamins – A and D are added to milk powder.  A helps your immune system, D keeps bones, teeth and muscles healthy. Milk powder is also relatively calorie dense.  And tasteless. 🙂

So needless to say, Dad now has milk powder (as well as butter and cream) in his mash, in cheese sauces and in fact anything where I can get away with it.

I’ve also changed up my cheese sauce recipe to make it as calorie dense as possible.  Incase this is useful to anyone, this is what I do:

Forget white / cheese sauce in it’s traditional sense entirely.  Instead…

  • melt full fat cream cheese with a bit of full fat milk
  • mix in double cream
  • add a few tablespoons of milk powder
  • (If it’s getting too thick add more milk)
  • add a heap of grated cheese
  • add some salt and pepper

….and use milk vs cornflour to reach the consistency you want

The great thing about this version is that when it’s frozen then microwaved, it doesn’t go stodgy like a proper sauce does.

Extra tip: If you’re prepping meals for someone in need of calories, pop a blob of butter on the top of everything when you’ve prepped it up so that as it is microwaved it doesn’t dry out and there are a few more calories in the pot.

There’s loads of extra information on how to fortify food here too. (Thank you, Mr R)

I forgot to take the scales with me after the first week, but this week on the new CKC regime for two weeks, Dad had put on FOUR pounds.  He was a whole nine stone (and a teeny bit!). He did say he had to go and take the weights out of his pockets after I weighed him, but I’m pretty sure he was kidding.

And even better, he’s been rating the meals I cook, and I’ve been getting some pretty good scores 😁😁😁 (not bad when you consider that as a vegetarian, I can’t even taste most of what I make him!)

Posted in COPD, muddled life, muddled life guide, Muddled Life Tip, Pog Life, Tuesday | Leave a comment

Introducing…Frank

I meant to write this post a couple of weeks ago but All The Things keep happening and time to write a blog post has just not been one of them.

But if I don’t do it now, it might remain one of the many, many posts that end up staying in my head and I don’t want that, because I’d like to introduce you to Frank:

Frank was the florist in my village until a few weeks ago when with no fanfare at all, the florist closed.  Luckily, someone had posted on the village Facebook group that it was imminent and I rushed down to say my goodbyes

Because you see, Frank is one of those people I don’t actually know – in his case I’ve never seen him outside the shop he worked in, I don’t know his surname, and I’ve never had so much as a cup of tea with him.  But he has a little space in my heart.

Frank was known locally – at least a few years ago – as someone who could be a bit tricky.  He didn’t do niceties for the sake of them and he could be more than a little direct.  However, it didn’t take much to realise that Frank was actually a mirror, and if you went in smiling and asked him how he was, his eyes shone and he’d be yours for as long as you were in front of him.

He made gorgeous bouquets, planted up planters (and when they didn’t have any he planted up ones I took in at no charge other than the plants) and he told me when to buy plants and when there were better alternatives ‘God, no, don’t buy that foxglove.  Find some that are going to seed and plant those instead…’

But what I loved most about visiting Frank was his stories.  You had to dig a little, but he had many – from his first job at London Zoo aged 16 where there were military style uniform checks, to his love of fashion from working in all sorts of places resulting in boxes of brand new clothes at home that he’s never worn as they weren’t right in a florist, to his agreement with his neighbours that he’d always leave his work boots outside and his door unlocked when he was at home, so should they not move for a while, they would know to check on him.

Frank has alway made me feel good too.  Even more recently when I don’t bother with makeup and wear the same oversized t-shirt or jumper (depending on the season) and my jeans, he’d find something, telling me that my boots are ‘right on trend’ or that ‘that colour really suits you’.

I took Frank a card I wrote where I tried to use words to tell him that he had been a light in the village for me and I bought some of the tin containers the flowers were displayed in.  We cut out their bottoms and planted them in the front garden where the earth is terrible and only weeds grow.  I’ve layered bulbs in them (apparently its called a ‘bulb lasagne’ – who knew?!) and I hope that they might look lovely in the spring.  Until then I have pansies, violas poking out there heads and inside, one of the last bouquets Frank made for the shop.

I do find it amazing how much someone you don’t really know can touch your life and add more than a few smiles. I’m going to miss that lovely man.

Posted in muddled life, the people you meet | Tagged , , , , | 2 Comments

I was doing it all wrong…

This week’s Tuesday included a surprisingly fantabulous trip to a hospital with Dad.

It was fantabulous on a number of different levels:

  1. Dad’s breathing is better than it has been in ages and he was able to chat.  I heard stories I’d never heard (how much he hated being in the cadets and how he was the only one in his group to fail at his soldier-ing test because he refused to react when told there was a sniper ahead as ‘it was just silly – clearly there wasn’t.’ 😂). It did also mean he had the breath to be a terrible passenger and remind me of the speed limit every couple of miles…
  2. We went The Pretty Way.  Dad avoids motorways at all costs and had been going The Pretty Way for years to visit friends and for hospital visits (Mum went a lot with her five different cancers).  It was indeed pretty and he know a surprising amount of local history that – thanks to the ability to breathe and talk – he passed on – between speed warnings and soldier stories.
  3. It turns out that I have been doing hospital visits all wrong.  Before we left Dad handed me hot cross buns to butter and a box of Tunnocks tea cakes.  We ate them in the waiting room (Not the teacakes – Dad said he gets the marshmallow round his mouth and wanted to wait until after his appointment incase he got in a mess.).  So it turns out that to make a hospital visit truly fantabulous, you have to take a picnic. 🙂

Mum, on the other hand was not as excitable this week and after rapidly finishing her coffee and plum – while I was only half way through mine and only on cake number one (they have great cakes in the special coffee area of the home.  I am attempting to somewhat justify the fees there by eating as many as I can at each visit…) sorry – while I was only half way through mine she looked at me, told me that she had ‘seen enough’ and could she go back now?  There is no filter with dementia, but at least you know where you stand 😳

Posted in care home, COPD, dementia, family, looking after Mum, memory, muddled life, muddled life guide, stroke, Tuesday | Tagged , , , , , , , , , , | Leave a comment

From Hello to Help: A Ring Doorbell’s Career Change

The idea behind this rather epic practical tip came from my Tiny Friend.  Tiny Friend looked after a relative for a long time and I knew about her tip a while ago but it’s only recently become relevant.

When Dad’s breathing is bad, getting to the phone, or just making a phone call can take more puff than his lungs can manage.  He mostly communicates via Facebook Messenger and email these days, but none of these options would necessarily work in an emergency.

We had talked about one of those alarms you can press that call relatives /contact an operator / call 999 when activated but that was a firn ‘no’ from Dad every time.

Then I remembered Tiny Friend’s solution.  She had used Ring door bells at her relatives house.  In her case they were to monitor via video to make sure all was ok, but I figured it could be used as an alarm for Dad.

So now Dad has a mobile Ring doorbell.  It’s connected to my and both my sisters phones so that should he need us, he just needs to press it once and we’ll all get alerted at the same time, giving a much better chance that one of us will be able to connect with Dad immediately and get him the support that he needs.  We can even see him as we talk to him so he can answer questions with head shakes and nods if talking puff has disappeared, as it sometimes does.

If I look at the app when the bell hasn’t been rung it’s mostly just views of ceilings as Dad puts Ringo down in different rooms, but that in itself is quite a reassuring sort of thing to see.

(It’s also worth noting that if you don’t need to record calls etc  – and I’m not sure why you would in this situation- you don’t need a monthly plan with Ring, so it’s a one off £100 cost.  That’s less than the quarterly charge of a more standard alarm).

So thank you, Tiny Friend. For this and for the huge support you always are; it is very much appreciated.

And thank you, Ringo (the door bells name, given to it by Dad). We really appreciate your career change from traditional door bell to support bell. I hope it will be very fulfilling. 🙂

Posted in COPD, family, muddled life, muddled life guide, Muddled Life Tip | Tagged , , , , , , , , , | Leave a comment

🎈🎈🎈Happy birthday, Dad!🎈🎈🎈


Not quite what we had planned, but a damn good cake (my offer to make a chocolate poo was passed over 🤷🏼‍♀️), connecting all of us through the powers of technology and most of us in person too. 💜

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

There is a possibility I might have magical powers…

To set the scene, It’s day 3 of our South Downs Way (SDW) walk and we’re due to walk 28km.  Day 2 we’d walked 23km and by the 20km mark my shoulders and hips hurt so much from my rucksack I was almost in tears.  I couldn’t even tip my head back to drink from the water bottle (At this point I learned to ‘hinge from the hips’ instead).  I’d spent the last 2 km of the walk working out how to get home on my own and leave Mr R and Percy to do the hike without me.

So I was struggling a bit, but decided to start Day 3 with my big girl pants on and get on with it.  Obviously, it started raining heavily, it was the most hilly walk of the week and was the day I congratulated Mr R for instinctively knowing where to go, only to realise we’d taken a wrong turn…

Anyway, we decided to take a different approach to Day 2 and walk as far as we could before we stopped to eat.  This was in part because it was raining so hard that making and eating porridge was going to be hard, and part because we realised that we are far faster and focussed first thing, possibly because that’s when we’re both used to doing most of our usual running.

We were a few hours in, in the middle of absolutely nowhere.  We had made the fantastic discovery that the only thing better than the perfectly ripe blackberries hiding in the hedgerows was perfectly ripe blackberries hiding in the hedgerows that have been kissed by the rain (seriously, if you see any in a rain storm or even a short shower, have try – they are delicious!).  We’d had a fair few though, and I’d started to day dream about other food.

And in the middle of nowhere, a couple of houses at the ends of long drives appeared in the distance .  And at the end of one of the long drives, I could make out a wooden table.  I decided to incorporate it into my day dream and said to Mr R:

‘See that table in the distance?  I’m daydreaming up the perfect vegetarian breakfast on it.  I’m thinking brioche bun with grilled halloumi, a little chilli jam and lambs lettuce.  What would you have?’

Mr R went for shakshouka, which I always find tricky to make and get the eggs just right, so I’m not terribly keen, but presumably I’d not cooked his daydream.

We giggled about the fact the only actual options we had was porridge, or our dehydrated pouches of lunch food as there were no stops near by the entire day.

But as we got closer, something weird happened.  On the far left of the table something came into view.  A plate covered with a glass dome.  As we reached it we could that see under the glass dome was one perfect, enormous flapjack.

Under the table was a plastic box which I opened .  Inside, there was a plate of flapjacks and a small sign saying they were £1 each, and to leave the money in the box.  We bought three.  And it turned out that the very best vegetarian breakfast either of us needed was a perfectly cooked, enormous flapjack that tasted better than any flapjack either of us had ever eaten.

And I think I might have magiced them 😉

Posted in camping, hiking, hiking with a dog, holiday, muddled life, Pog Life, walking | Tagged , , , , , , , , | Leave a comment

What the hell was that?! A week walking the South Downs Way

My plan to post daily on our South Downs Way walk failed because…well, All The Things 🤦🏼‍♀️

First: By almost the end of Day Two I didn’t see how I was going to get to the end of Day Two, let alone any other days.

Second: We were staying in campsites with limited – if any –  access to electricity and we needed to charge phones, watches and Percy’s tracker.  We had bought solar power thingys to create out own power, but you need sun for that…

Third: It was far, far harder than I’d anticipated walking 20km+ a day with a 12kg rucksack.  By the time we pitched our tent each night and eaten our rehydrated dinner, I mostly wanted to sleep.

But….we (mostly) made it.

The second night we washed our t-shirts, pants and socks (wash one, wear one to keep the weight down) only to discover there was no chance of drying them before bed.

So we rigged the washing line up inside the two man and a dog tent and…both woke up with wet t-shirts on our faces.  It was a little like being suffocated by dead fish.

‘Luckily’ Mr R recalled that when in the forces his Dad had put damp washing in his sleeping bag to dry it.  So for the next few nights I slept with the dead fishes…

On the third night we had the unusual experience of sleeping at a site on top of the downs (most sites are in the valleys where villages are, so you climb down in the evening, up in the morning and stay on the top of the downs (with a few mountainous hills on the way) during the day.

This night was great though – no additional steep bits and a stunning view.  It did only have one portaloo which was pretty much full and the ‘shower’ was a hose in a roofless horse box, but I had a wet wipe wash and we agreed we’d just get up and out early the next morning and that would be fine.  And it would have been, had the storm not hit.  Could I remind you wee were on the top of a hill?  We spent pretty much the whole night with the tent being bashed so hard that the poles bent, wondering if the canvas was going to stand up to the winds.

We made it through, but we’d had pretty much no sleep and it was a 30km day.  And by this time there was a weather warning in place.

The wind was still howling and the rain was bucketing it down.  This was a bit of a lull while we had our morning coffee:

We agreed that the only option for our sanity and Percy’s welfare was to miss this day completely,  So we got the bus to our next stop.  The rain was still torrential when we arrived and we couldn’t pitch the soaking tent in it, so we stopped in the shed / summer house that housed the campsite vending machine and Percy and I slept…

We started again the next day in the rain but the weather improved gradually –  so much that by the last day we were actually hot.

So we did it, but not entirely.  We stopped at the South Downs shop on our bus ride day and saw some  South Downs 100 mile walk badges.  I said we couldn’t buy them because we wouldn’t really have done it, but a very lovely South Downs Ranger called Ethan overheard and asked what had happened.  He told us his patch was the leg we were missing and he’d walked it hundreds of times in his job and we could absolutely take a couple of his walks to complete ours 🙂 .  So I bought the badges but have not attached them to anything yet.

We will be going back to do that leg so we can wear our badges with pride.  But we will NOT be camping at that campsite this time. 😬

There are quite a few stories from the week you might like. I’ll be posting them soon – I just wanted to respond to a few ‘proof of life’ requests I’ve had after going quiet on here after Day 1 🤓

 

PS:  There is NOTHING better than the night sky in the middle of the South Downs.  So Many Stars.

PPS: It was mostly Type 1 and 2 Fun.  A bit of Type 3.  And I might have discovered a teeny bit of Type 4…

Posted in camping, hiking, hiking with a dog, holiday, muddled life, Pog Life, Pog Pictures, walking | Tagged , , , , , , , , | Leave a comment

SDW Day 1

14km to first stop done.
Showers, sun and rainbows.
And type 1 fun 😁

Posted in dogs, hiking with a dog, muddled life, walking | Tagged | Leave a comment