Muddled Life Practical Tip – Hospice support

Posted on March 11, 2024 by thepogblog

It’s funny, isn’t it, how you don’t see things that are right in front of you?

My Dad was diagnosed with COPD years ago.  I have no idea how many years as breathing issues have always been part of Dad.  He smoked for years, he coughed a lot, he gave up smoking, he then had inhalers and struggled a bit, but it was just ‘Dad’s breathing’.

Last year my aunt died and at her wake, three different people came up to me to ask what help Dad was getting health wise, and I looked at him through their eyes and realised that his breathing wasn’t a ‘bit worse’ it was ‘alot worse’.  And we’d been so caught up trying to look after Mum we’d not thought about it as much as we should.  But I didn’t really have a clue what to do or how to do it.  In the end…

  • I did some research into COPD – the different stages, what they mean, how they are assessed etc.
  • I talked to Dad and discovered he’d not had any tests on his breathing since before Covid (he’d had some appointments with a COPD nurse at his surgery who – amongst other things – had told him he was not to use his emergency medication too often, or he wouldn’t get any more. He refused to see her again), so we didn’t know what stage he was at.
  • I volunteer for a hospice where I live (a different county) and as part of my training knew that at some stage (I’d assumed in the far away future) Dads COPD would make him a candidate, so I called Dads local hospice to establish what their criteria were for taking on a patient and how to do that.
  • And from all that I worked out that he needed the tests the GP hadn’t been organising in order to establish what stage his COPD was at and in turn, whether we met the hospice criteria.

Now, this is a hard one to write – not least because I know as one of my biggest blog cheerleaders, my Dad will read it.  However, I assume that I am not the only one who didn’t know all this, and I hope the information in this post will help others as you don’t know what you don’t know, do you? Dad has given his permission to share this so other people can benefit from it.

The important bit to know here is that hospices are not just places people go to die.  They support people with a diagnosis that they won’t get better from to live the best possible life they can.  Different hospices have different timelines for this – the hospice local to me takes clients with potentially a few years life expectancy, others support people in what is expected to be the last year of their life.

So, next steps:

I pulled together all the research I had, referencing the NHS website (no Dr Google that could be refuted), added the information the hospice had supplied, and emailed my Dad’s GP. At this stage I didn’t have the right to request that they talk to me , but I was quite…let’s say ‘assertive’ in my email, setting out my expectations very clearly.

To cut a very long story short, Dad had his tests and the GP referred him to the hospice immediately and… (important bit coming up)…

…The hospice were bloody amazing.

They called Dad, connected him to my previous enquiry call and then called me.  They set up an appointment for him with a nurse practitioner and in that hour or so  with that nurse she:

  • Put Dad in a different frame of mind about what a hospice does.
  • Talked through their role in managing Dads COPD.
  • Set up an appointment with the physio to give him exercises to support his breathing
  • Talked through the concept of a DNR (Do Not Resuscitate), filled one in with his wishes, printed it for him to have a copy at home and put it on the system so it’s on records available to all heath staff whether he is in hospital or hospice.
  • Applied for his Attendance Allowance.
  • Applied for his Blue Badge.
  • Reassured him that he can take his emergency medication as often as emergencies occur – there is no limit as the surgery nurse had said.
  • Organised for Dad to have daily Ensure drinks – to build him up a bit as he is a skinny malinky.
  • Contacted his GP to request a referral to the respiratory team (which the hospice assumed he’d been under for years, but nobody had ever mentioned it).
  • Oh, and they gave us cake too. We especially liked that bit. 🙂

Dad has the option to join Living Well sessions (exercise classes, art sessions, gardening sessions etc), but he doesn’t really like people 🤦🏼‍♀️ so he’s declined these.

Dad is a ‘patient initiated’ hospice client.  That means at this point we can call the hospice at any time we need support, and they don’t contact us other than at our request.

It’s meant – for example – when dad had a particularly bad episode with his breathing and I called the GP the actual words the receptionist said was ‘well, I don’t know what you want me to do about it’.  I called the hospice and they arranged for a nurse to call my back within thirty minutes to confirm that he should take his emergency medication (that the surgery nurse made him think he shouldn’t), gave a bit of advice on other things that would help, and arranged for someone to call Dad in a few days to make sure he was doing ok.  The difference in care is phenomenal.  And that is just one small example.

None of this information is signposted anywhere.  It was coincidence and bloody mindedness that got us to where we are.  And I imagine there are many people out there who, like me, didn’t know what they didn’t know.  So, I hope this helps you if you are one of those people.

What is the tip here?

  • Know that hospices are not just about dying; they support their patients receiving palliative care in a way that GPs just don’t / can’t.
  • So, if someone you care for has a life limiting diagnosis, contact your local hospice to find out if they support that diagnosis (different hospices support different illnesses) and what criteria needs to be filled to be accepted as a patient.
  • Find out who needs to make the referral (usually GP or other health professional)
  • Formally request that – if appropriate at this time – the health professional makes that referral (I’m starting to find that request in writing are far more effective than verbal ones as nobody can ‘forget’ them in the same way)
  • Be ready to have life made easier while it’s being a bit tricky.

Resources:

 

 

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The start of The Tuesday Blanket Tuesday

Posted on March 7, 2024 by thepogblog

‘Hmmm.  You’re rather twisted aren’t you?’

‘I am?’

‘You are.’

And that’s how the conversation started as I stepped into the room where I had an accidental massage this Tuesday.

My sister (a beautician) was giving mum a facial at the spa where she works.  I’d done Tesco on my own (amazingly fast, but surprisingly boring without Mum), picked up Mum and taken her to the spa.  I sat in reception and pulled out my laptop to catch up on some work and my sister mentioned her colleague Mike was there, should he appear round the corner.  I know he does some sort of massage and jokingly asked if he had a free slot.

He did.  I went in.  And I was pummelled.  Had I known that the walls were so thin, I’d have tried not to swear so much, but seriously.  It alternated between agony and ecstasy and when he threw my leg over his shoulder, twisted, pushed and…oh god….my spine did the most delicious cracking all the way from the bottom to the top.

‘Do it again!’

So he went to the other side of the table, threw the other leg over his shoulder and arrrrrrgggghhhhhh!

So… this Tuesday was a little different.  Mum loved her facial, telling me that she forgot my sister was there and in fact ‘everything disappeared from my head’.  I resisted the urge to comment that it wasn’t a huge feat for that to happen and let Mum find words to tell me how very lovely it was and that she would like to do it again.  Very soon.

Back at Mum and Dads we got on with cooking the pasties dad had seen Stepson 1 cooking in a previous post  and liked the look of, while we danced to Abba as usual.  It didn’t escape me that I am currently teaching different ends of the spectrum (18 year old novice, 77 year old veteran) to cook the same thing.  The jury is still out on who is the better student though 😉

And then we went on to the knitting. Mum has kitted out the entire family in hats and scarves now. And between the fact that it’s getting warmer, and because there are only so many hats and scarves you can wear at any one time, and the fact that she was still having issues with a paper template of a square to create the hats, I thought I’d had a genius idea in a project between us where no templates were needed and anything and everything worked.  So for her birthday, along with this card:

I bought her a knitting bag with lots of compartments so things don’t get in a muddle and some wool.  There was a bit of confusion to start, but when I left, we’d made a start on our crochet / knitted blanket:

It was not quite the genius idea I thought.  Because yesterday I got a phone call from Mum in tears because she couldn’t remember what she was supposed to do and had tried, and undone it and didn’t want to try again… So firm instructions don’t work (‘here is a square template, knit your square this size with these needles’).  And loose instructions don’t work (‘knit with whatever needless you want, whatever shape and size you want’).  So, I think I need to go back to the drawing board a bit here.  But we will get there, even if we all get a bit more twisted up in the process…

And I told Mum I’ll take a photo of where we have got to every week and I’ll post the picture on here so anyone interested can see the progress of The Tuesday Blanket.  I’m not sure she entirely understood, but she was very happy people would see what we had done.

So lovely people, here is the start of The Tuesday Blanket:

🙂

2016

Posted in Cooking, crochet, family, looking after Mum, stroke, Tuesday | Tagged , , , , , , , , , , , | 1 Comment

Muddled Life Practical Tip – Attendance Allowance

Posted on February 29, 2024 by thepogblog

Someone mentioned Attendance Allowance to me when Mum first had her stroke.  It was just too much to think about at that point and for some reason, Dad or I discounted it later as we thought Mum wasn’t eligible for it.

In actual fact:

‘Attendance Allowance helps with extra costs if you have a disability severe enough that you need someone to help look after you.

It’s paid at two different rates and how much you get depends on the level of care that you need because of your disability.

You could get £68.10 or £101.75 a week to help with personal support if you’re both:

  • physically or mentally disabled
  • State Pension age or older

It does not cover mobility needs.

You do not have to have someone caring for you in order to claim.’

https://www.gov.uk/attendance-allowance

We found out that Mum and Dad are eligible at our first appointment with the hospice.  They applied for Dad on the spot as if a medical professional has said you might have 12 months or less to live, you are automatically entitled to the allowance.

The hospice are only involved in Dads care, but they were kind enough to let me know Mum would also be entitled and gave me a paper form to fill in for her.

In December 2023 it was reported that over 1.1 million pension age households in Great Britain could be missing out on £5.2 billion of Attendance Allowance per year.

Having looked at the form, I can see why.  🤦🏼‍♀️ It’s 30 pages and 63 questions long.  Some are very simple; some require long answers.

My experience:

  • I filled in Mums form, but didn’t have all the information I needed on her exact care needs, so had to fill in those bits with Dad’s help.
  • I did a second form with my cousin for my aunt. This time I knew what I was doing a bit more and it wasn’t as complex as my aunt is more independent than my Mum, yet it still took 2 hours.
  • All that said, if you have your Little Black Book to hand, you have all the factual answers you need.
  • Questions about support needs are not difficult and are actually mostly tickboxes with white space for extra information if you want to add it.
  • The most complex part both times was Question 14.

Question 14 – asks for the name of illness or disability, how long you have had it for, what medicine or treatment has been prescribed and what is the dosage.

The issue both times is that my mum and my aunt both have more than one illness or disability, but I didn’t know which medication was for which condition.  It’s possible to work out some connections using Google or the leaflets that come in the tablet boxes though, so we did that.  I’m not sure in either case I got the matches entirely right as some of it was guess work , but Mums application was processed and approved so maybe it doesn’t have to be 100% accurate.

Useful point:  You can sign on behalf of someone else – for example if you have Power of Attorney or you fulfil other criteria.  We haven’t got the Power of Attorney though yet (I made a mistake on them resulting in another 20 week delay 🤦🏼‍♀️), so I chose the option to be appointed to act on Mum’s behalf.  As a result of that, I got a phone call from a very lovely man telling me that Mum had to be interviewed and I had to be there.  We assumed that it was so Mum could be assessed to see if she met the criteria, but when a second man called to book in the interview he said he couldn’t tell me anything about what would happen.  This caused a bit of worry for Mum as she doesn’t like being ‘tested’.  However, it turned out that actually I was the one being interviewed, to check I was Mum’s daughter and it wasn’t a fraudulent claim.  I think this is because when you are appointed, you can have the benefit put in your bank account and take charge of it entirely.  I hadn’t opted for that, but presumably they have to tick all boxes; it’s just a shame they didn’t give me enough information so Mum hadn’t had to worry.  So don’t worry if you get an interview call in the same circumstances.

So Muddled Life Tip Summary:

  • Go here for all the information on the government site.
  • The form is here.  You can fill it out online or print it.
  • There are guidelines to fill in the form here
  • Get together all the Little Black book information
  • Find all medications relevant to the disability
  • Put aside an initial two hours if you want to do it in one go
  • If you leave a question to go back to, stick a post it at the top of the page or something – the page numbers didn’t print out on my copy which made it really tricky to go back to bits I left until the end.
  • Ultimately, JUST DO IT – it gives the freedom to pay for things like a cleaner when physical things get tricky or an occasional carer or taxis when driving isn’t possible so that the recipient gets to live the best life they can.

I hope that helps if this is something you didn’t know about or hadn’t got around to yet.

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Purple hat Tuesday

Posted on February 27, 2024 by thepogblog

Mum was an amazing knitter.  She’s made countless thing over the years and I never once heard her say a pattern looked too hard.  She made matching cable knit dresses for me and my sisters only a few years ago and ran them up in no time.

Since her stroke, following instructions is tricky and numbers mostly elude her.  She has tried a couple of jumpers and there were many, many tears before they were handed over to others to finish.  Finally we persuaded her that we all NEDDED scarves.  So we all got scarves.  And then she found a pattern for a hat and thought she’d do that….argh….no!  So I made her a paper template and told her to make a square of knitting as bit as the square and we’d make hats that way.

Don’t get me wrong – there have still been sulks and tears, but, well, after Tesco, and a bit of Abba while we made a chicken curry for Mum and Dad’s dinner tonight, we sat down and finished the final two of the four she decided to do.

And now Mum and I have matching hats! 😁😁😁😁😁😁😁

 

 

 

 

 

 

 

 

And I’ve told her we have to both wear them whenever we go out together, even when it’s the summer.  I think I made her a bit nervous.  But it made me smile.  And I think it made Mum smile too 🙂

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Learning to chop onions – a step mums guide

Posted on February 26, 2024 by thepogblog

Step Mumming is way harder than I ever anticipated.

Not just the fact that not all step children may want you around and make that fact very known to you, but the balancing act of being useful but not treading on any actual parents toes while also not assuming that all parenting is being done by any of the other adults in the equation.

And I think I might have got that balance a bit wrong in one particular area.  Stepson 1 (I can’t call them ‘Little’ and ‘Big’ any more as at 14 and 18 they are both great lumps now)… so yes, Stepson 1 intends to go to uni in September.  He has a conditional place, all the enthusiasm for it and a giant brain when it comes to maths and computers.  What he doesn’t have is much common sense.  What he has even less of is the ability to cook for himself.

The weekends they are here he makes his own lunch and helps with peeling vegetables etc and I kind of assumed he probably did more cooking at home in the week.  His grandparents bought him a student cook book for Christmas though, and on our first practice I realised that if things stayed as they were, ham and cheese sandwiches and peeled carrots might be the only thing he’d be eating when he went away.

I also discovered that student cookbooks are pretty useless.  The first recipe he selected to try was salmon fillets with spring onions.  The second option: steak and home made chips.  I explained that it’s unlikely that 1) his budget will stretch that far 2) he’ll the time or the inclination to cook these sorts of dishes, so we selected something a bit easier and more useful to practice.

And then I discovered that student cookbooks assume a level of understanding in the kitchen.  Stepson 1 wasn’t sure how to slice an onion.  And had no clue what to do with a pepper.  Or how big a ‘pinch’ was.  He didn’t know the difference between a spring onion and celery.

So – with a slight worry that I might be stepping on toes, but doing it anyway, we have gone right back to basics, started talking about prices of this vs that and  ‘if you had this left over, how could you use it to make another meal?’

Since January we’ve covered:

Sausage and Tomato spaghetti (so much pride):

‘Quick’ Ham and cheese pasties (took what felt like nine hours but might have only been one):

Spaghetti Bolognaise (they ate four portions between them):

Omelettes (‘I had no idea they were so easy’):

Pepperoni pizza (‘But it looks like a real pizza!’):

Meatballs in homemade tomato sauce with spaghetti:

For the last two I’d written (very detailed) instructions on what to do and backed away from the kitchen unless shouted for, so he practically did them himself.

The boy’s done good.  And he can chop up an onion without supervision now.

In fact the boy has done so good, Stepson 2 has decided that as soon as he goes to uni he’ll be up for a visit as he’s quite keen on his brothers cooking.

And in other news, I made the boys a chocolate cake while they were at the football for weekend snacks, which Stepson 2 confirmed maintained my status as ‘bad ass step mum‘, which I’ll take.

I’ve just realised, for someone who spent years mostly eating toast and yoghurt, between Mum and Stepson 1, I’m not doing too badly on the cooking lesson front.  Who would ever have thunk it? 🙂

Posted in Cooking, family, Pog Life, step mum | Tagged , , , , , , , , | 2 Comments

Woolgate Tuesday

Posted on February 22, 2024 by thepogblog

I’ve been lucky:  since the start of the year Mum has been in a good mood, or I’ve been able to manoeuvre her into one relatively quickly on my Tuesday visits.

This week…well, things were not as good.  We had grumping, crying, shouting and sulking…all before we even got to Tesco.

The culprit of the frustrations was Mums knitting.  Unfortunately, she didn’t tell me this until we were in the car and having to find somewhere to pull over because I’d totally forgotten to put the seatbelt on Mum and the ‘you’re being naughty not wearing a seatbelt’ alarm was getting as frantic as Mum’s explanations of the problem.

‘It’s not right.  It’s not like that…’ <pointing at the arm of her coat> (a brown puffa type jacket), ‘it’s like that’ <pointing at another part of the same arm>

I was flummoxed.

‘Do you mean it’s smooth? ‘ I asked

‘NO!  It was the colour.  Now it’s pink!’

We’d bought the wool together last week.  It was purple.  All the way through.  I stupidly said this.  I got a:

‘You are not even trying to understand!’ in return, followed by a sulk that lasted until the Tesco carpark.  I tried jollying Mum out the car to be told that ‘I am really cross with the wool shop and I could go and complain because it is just terrible…’

Why didn’t I just agree?!  I said I thought we’d probably be able to work it out when we got home and was awarded *that* look.

*That* look is a Mum special.  As a child I remember if you got *that* look, life was basically not worth living for the foreseeable future.

Luckily, while she used to be able to hold onto sulk for days, Tesco turned out to be a bit of a distraction.  She refused to get the first few things on the list, but the orange juice is her domain so I sent her off to find it.  Then redirected her, twice…and by the time she’d popped it in the trolley she was back in Tesco mode.

We shopped in record time, did a very successful trolley check (I read the list, she tries to find each item in the trolley, just so we know we didn’t forget anything) and left to go to her sisters for a visit.

She went back to the wool issue in the car.

I distracted her by asking for directions.

We got to her sisters and the distraction continued with having to choose between a mini Battenburg and a Cherry Bakewell to go with coffee (she went for both).

While I helped my cousin out with some forms, Mum and her sister chatted quite happily.

Then Mum came to see what we were doing and started telling my cousin a story that was entirely in her head.  And she was utterly convincing because – I assume – she entirely believed what she was saying. As Mum went back to sit with her sister, I told my cousin that no part of what she’d just said was true and explained the actual situation.

And that highlights something for me. Right now, Mum appears to make sense a lot of the time.  But a lot of the time her facts are entirely wrong.  She tells people that she never gets to leave the house and is stuck inside all the time, for example.  Yet this week one of her friends took her out for coffee.  Next week she is meeting a group of friends for lunch. I’ve taken her out, my sisters have taken her out, Dad took her for a drive.  And this is the issue: at what point do we forewarn those people she sees without us around that a lot of her ‘fact’s’ are not?  Because honestly, I don’t want people thinking that she never sees anyone or goes anywhere and we are all mean to her.  And from a more selfish point of view, I don’t want people to have bad – incorrect – opinions of me, or my sisters or my Dad. And then I go full circle in my head and think ultimately, does it really matter? 🤯

Anyway, we went home.  The wool was still an issue.

Fortified with a hot cross bun, we took a look, and I realised mum had swapped needles part way though, so the tension (and therefore appearance) had changed massively.  I tried explaining.  I showed her examples.  I showed her the wool label with the correct needle size on it. I got told ‘No, no, no’ and got *that* look again, followed by mum staring out the window, ignoring me.  That last bit turned out to be rather a lucky thing as while she wasn’t looking, I took a deep breath and undid the entire section she’d knitted on the wrong needles and really quickly put it back on the right needle.  I handed it to her and asked if it looked better.

‘Oh yes.  Maybe there wasn’t anything wrong after all…’ 🤦🏼‍♀️

I’ve now hidden all the needles except the right ones.

Next week maybe we’ll sort out any knitting issues as soon as I get there and go back to Abba and some cooking.  It might be a bit less fraught that way.

This Tuesday wasn’t a good Tuesday.  But it wasn’t entirely terrible; just a bit tough.  And you have to have those days to appreciate the good ones, I guess. 🙂

I need to say at this point as I’ve not so far: I have huge admiration for anyone who is a full time carer dealing with these issues day in, day out – my Dad, especially.

You may remember the photo on the left I posted of Mum and my Aunt last time we visited.  When I was hiding Mums knitting needs I found the one on the right from when they were (a lot!)younger.  💜

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

The Black Book Muddled Life Tip

Posted on February 19, 2024 by thepogblog

I can remember the number plate of the mini metro that was our first family car.  I can remember the address in America of my friend who moved their when we were 11 (including the zipcode) and I can remember all the lyrics to pretty much every track on the ‘Now that’s what I call Music’ double cassettes that were released in the 80’s.

What I cannot remember for love or money is either parents’ year of birth, their age, or their postcode.

And it turns out that when you start stepping into muddling through life with older parents you need these.  A lot.  You also need their:

  • NHS number
  • NI number
  • GPs name
  • GPs address
  • GPs phone number

Increasingly you need their:

  • Regular medications
  • Bank details

And in my Dad’s case, physical access to their Tesco club card so you can get those points and club card deals… 😬

The first few times I needed information I stuck a post it note with their dates of birth on my kitchen whiteboard (no, I have no idea why I didn’t write it on their directly either), then I added another with the NHS numbers.  Then I realised if I ever wanted to write anything on there, I needed to do something else.

I’m old school, so around this point I created the ‘All the Mum and Dad stuff’ book where I made a note of these things as I needed them.  Someone less old school might want to pop the details in their phone (I’d advise against something like a computer that isn’t carried around with you, as it’s often at appointments that you seem to need this information).

I use the same book to write notes when we’ve had appointments at the hospice so I can pass on information to my sisters and so we can all remember what was said – the same with phone calls or anything official that I have needed to do.

And the next step (which has taken me a while to ask Dad to help with because its quite a tough one) is to ask him to start adding notes to it about their house – where the stop cocks are, the oil supplier, how to set the thermostat and heating, where the water meter is, how to know when the cesspit is full and what to do about it.  The sort of thing that he won’t be able to do forever and might not be either well enough to tell me, or maybe won’t be here.

My aunt died last year and she left The Red Book and The Yellow Book, which her husband had left for her – what to do in relation to XYZ when he wasn’t there to ask anymore.  Some of the info was useful to us in relation to probate, some was useful to the people who bought her house.  I imagine all of it was useful to her initially (although two books did seem a bit excessive to me!) …so that at the point when there are bigger things to deal with, you’re not trying to work out how to do the mundane life stuff that we take for granted.

So, The Black Book Muddle Life Tip:

  1. Don’t wait until you need the information.
  2. Don’t write down sensitive information like pin numbers unless it’s somewhere password protected (and if that is the case, make sure the person you want to access it had the password.)
  3. Make a note of the following relating to your parents (or if you are very orgainsed and would like to be a really helpful parent, pull the information together in one place for your adult children way before they need to help you out):
      • Date of birth
      • Age
      • Full address (including postcode)
      • Full name (that may sound straight forward, but spellings and use of middle names need to match official documents)
      • NHS number
      • NI number
      • GPs name
      • GPs address
      • GPs phone number
      • Regular medications
      • Bank details

4. And if things around the house are getting more tricky (or even if they are not yet) , it might be an idea to start making a note of things relating to those too.

🙂

Posted in muddled life guide, Muddled Life Tip | Tagged , , , , , | 2 Comments

The chicken worked (!) Tuesday

Posted on February 15, 2024 by thepogblog

You might not believe this, but…we had a huge success on Tuesday this week.

Whilst shuffling around Tesco, I did my chicken impression for Mum accompanied by the usual ‘what am I?’ question and Mum shouted (while laughing) ‘Chicken!  Stop!’  It is the first time she has remembered the word ‘chicken’.  But it didn’t stop there…oh no.  The impression continued while I asked ‘What do chickens lay?’ and (more laughing) ‘Eggs!  Stop!’.

It was brilliant.  And it convinced me that repetition is the key to re-planting words in Mums head.

We try this with the trolley before I let mum decide who will be out lucky cashier each week.  We have just been through the shop, I’ve told her what is next on the shopping list and she has attempted to find it and put it in the trolley (this doesn’t always work – she cried this week because she couldn’t find the chocolate, but was quickly distracted into a happier place by choosing her biscuits). We then stand in a quiet aisle, and I read out the list while mum tries to point to each item to make sure we have everything.  She is sneaky and tries to cheat by doing very vague pointing and getting the giggles and claiming she needs a wee, but she can remember maybe a quarter of the names of things.

 

After the joy of Tesco we had a ‘quick’ diversion into down to buy wool for her, go to M&S for a coffee, have a paddy over my suggestion she tried the escalator rather than the lift, have a sulk when I suggested that we didn’t need a cake as we had just bought hot cross buns to have with Dad when we got home, another sulk when I wondered if we could share one cake (we couldn’t) and tears as she told me my sister had thrown out her new shoes because they were ’no good’.  There were more tears when I pointed out that the shoes in question were actually on her feet and maybe my sister had thrown out the old ones with holes in the toes.  No, she insisted, she had definitely thrown out the ones that she was wearing right this minute and I was just not even trying to understand…

At home, fortified by our hot cross buns, I thought I’d try out the idea that repetition makes things stick.  I got out the wooden spoon as we’d spent an entire cooking session a few weeks back trying to name that.  Nope.  Gone.  I was sewing up some things for Mum at this point and asked her to go ang get me the scissors, wondering what she’d come back with.  Amazingly she brought them back from the kitchen, but then couldn’t remember why she had got them and handed me her knitting needles.  I took it in turns holding up the spoon and the scissors seeing if she could name them, making it into a game, then held up a pen…

’What’s this?’

‘A tape worm!’

I mean… 🤦🏼‍♀️😂🤦🏼‍♀️😂

After a few more minutes of ‘shuffling’ the three items behind my back and holding one up, Dad suggested I add in actions.  And bingo…she got the names right (most of the time).

So, words in isolation are clearly tricky to remember.  Words with associated actions (or terrible impressions), can stick, for a while at least.

While we were being silly I asked Mum if I could take her to the doctor to do this sort of game with them as they might be able to give her something to help her find her words a bit more.  Mum’s not been seen by a GP since before her stroke and trying to get an appointment needs nerves of steel and a lot of time.  I don’t even know if a diagnosis would change anything.  The answer was a flat no…for now, anyway.

And we’ll see where we are with the spoon, scissors and pen next week.  God knows where the tape worm came from though – we’re not sure it’s the sort of thing mum would ever have been able to identify…

So this Tuesday was pretty good.  It had more emotions than the last few, but I think I am getting better at embracing my inner duck and just letting the frustrations both of us feel roll off my feathers so we can both get back to smiling again. 🙂

Mum, when she was little 💜

 

Posted in looking after Mum, memory, muddled life guide, Muddled Life Tip, stroke, Tuesday | Tagged , , , , , | 2 Comments

A different Tuesday

Posted on February 11, 2024 by thepogblog

I work online.  Mr R mostly works online.  Remote working. We thought it would be interesting to see how remote we could make working in the UK, so last Friday, we drove to Sennen Cove, which I think counts as the last town before Lands End in Cornwall.  I mean, it must do, because I took Percy for  a plod on the Saturday morning and accidentally ended up there, narrowly missing the Lands End Park run…

We alternated days to work and days to walk and it worked out brilliantly – it felt longer than a week, it still felt like a break and we got to do beaches and watch crashing waves and listen to the sounds of the sea between full days of work.

Before we left we told anyone interested that we’d be walking whatever the weather because ‘as long as you have the right clothes, it’s all good’.  We were at about Heathrow when I realised that our waterproof trousers were still hanging on the back of our utility room door….🤦🏼‍♀️

So our first day was spent going to Mountain Warehouse to discover that none of the women’s waterproof walking trousers were in my size, and to fit into the mens ones I had to go a size up from the ones Mr R was buying himself (to be clear, this was so they could encompass my substantial thighs and calves which are not dissimilar to substantial tree trunks; Mr R on the other hand has spindly legs on account of his running about eleventy billion miles a week).  The waist is very baggy.  But I was less than impressed.

The huge upside of this though, was that we thought we’d have a look around Penzance, which we never had on previous visits.  It might not be the most salubrious place in the world, but it does have a shop selling woollen jumpers. And not just any old jumpers.  Jumpers that are 100% wool and smelling a little sheepy to prove the point.  And that are knitted by Frank, an 85 year old local man.  And they cost £30.  £30!  I asked why so little – apparently Frank can churn out 30 a month sometimes (he’s using a machine rather than needles) so the lady in the shop can’t sell them fast enough but when he stops, they will double in price, she told me.  I bought one, wore it all week and went back on our last day to get another…and bought two.  Because when you are part toad, a 100% wool jumper can be worn practically September – June and that makes me a happy part toad.  Three makes me almost ecstatic.

So, what did I do on Tuesday last week rather than Tesco and cooking to Abba?  We did an 18km walk along the South West coastal path and back through some fields, some of which might have been a footpath and some of which were not even though they should have been.  It was stunning.

It was not raining but it was freezin’.  Unfortunately I couldn’t fit my Frank jumper under my coat (I opted for XL), but it was waiting for me when I got back to sit in front of the fire and feel grateful that we’ve now discovered a way to make remote working work so well.

And while I wasn’t there and it wasn’t too cold for the temperature to cause Dad breathing problems, Mum and Dad went to Tesco together.  Slightly disconcertingly Dad sent this message on our family chat.

So this Tuesday I will be going to Tesco with Mum as I do not trust them.  Roll on Mum pushing the trolley and laughing at my chicken impressions.  And here’s to a spot more remote working in the future 🙂

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Double confusion Tuesday

Posted on February 1, 2024 by thepogblog

What do you do when you are just getting the hang of managing your Mum that you (lovingly) describe as ‘mad as a box of frogs’ to anyone asking how she is?  Well, you go to Tesco for a bit of trolly pushing excitement then take her to visit her sister.  Who has Alzheimer’s.

Mum took offence that I used Google Maps to get us there as ‘I know the way and it’s already told you the wrong thing’.  So, I asked mum to direct me.

Google lady: ‘Take the next left in 300 meters’

Mum: ‘Take the next left in….there THERE’ <much waving of arms>

She was cheating.  So I turned off the volume, telling her I’d turned it off completely.  Much waving of arms and pointing happened

Mum: ‘You go that way…. over there!’

Me: ‘Is that left or right, Mum?’

Mum: ‘Well I’d imagine it’s one of those, yes’ 😁

Thanks partly to Mum and a slightly bigger part to the Google lady we made it…

We sat in my Aunt’s house and talked about all sorts.  My Aunt goes to a group she seems to love and was telling Mum that someone from her class in school has just joined (…even more impressive when you consider that my aunt and this lady are both 84!) She and Mum then discussed where this lady had lived – the village and the actual house – when they were at school and how many brothers and sisters she had.  The detail was impressive.  My Aunt told me all about her group and how she didn’t want to go initially as it was ‘full of old people’ (also Mums argument when I suggest anything so daft to her), the sort of activities they do and the food they have.  Then she told me about having to renew her driving licence and what the process was for that.  I know nothing about driving licence renewal so asked some questions as it seemed a great opportunity to learn.  She answered them all without hesitation.  I was impressed.

My cousin arrived a little while later – we’d let our mums organise meeting up but had simultaneously checked in with each other to make sure they had both remembered the right details. I replayed everything we’d talked about, and my cousin gently told her mum that her driving license wasn’t up for renewal – it’s her blue badge they are having issues with getting reissued.

And suddenly the penny dropped:

People sometimes tell me that they’ve had a totally normal conversation with Mum – that she knew what she was talking about and made total sense.  And some days she can and does, especially if she doesn’t have to recall names or dates.  But what I realised is that when we don’t know the background of a story someone who is a bit confused is telling, we don’t know that they are confused.  They are telling us their truth – but not the truth.  And obviously we know now to go with it rather than correct the information, but in honesty I’ve found that tricky in the past when Mum is swearing black is white and white is black, but as my Sister has drummed into me I ‘smile and nod, smile and nod…’ 🤦🏼‍♀️

So, we didn’t do any cooking or dancing to Abba this week, but we got to do some visiting and Dad got a bit longer than usual to relax and get absorbed in his book.  Everyone enjoyed my chicken impression too – I feel like I may have missed a calling in life with the reception it had there and in Tesco.

There was a moment of drama when we got back and decided to have a coffee and one of the hot cross buns each that we’d bought in Tesco to discover that one had already been eaten (Mum and I had shared it on the way to my aunts) and a bit more when Mum struggled to remember how to cast off so we could tassel up her newest scarf.  But we resolved both issues and Mum proudly gave Dad his scarf to wear ‘even inside because it might help his breathing.’ 💜

And that was it for this Tuesday.  A different Tuesday, but a good one. 🙂

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