Neighbourhood (Mummy W) watch

You might have read a few posts ago that Mum was recently rescued from a hedge while on the little walk she does regularly.  As this is something that is more likely rather than less likely to happen in the future I had a bit of a think about options of how to manage it best.  There is no GPS or mobile signal on the walk at all (I tested it with various trackers) so that’s no an option so more old school methods were needed.

So I called my amazing friend (Gorgeous Godson’s Mum) who used to live in the same village and whose parents still do, and we had a chat about it.  And then I ran past Dad what we thought might be a plan and – even though I didn’t want to for so many reasons –  this is what I did…

I created this flyer / wanted poster / if found, please return to note:

If found, please return to…

This is [Mummy W]:

She lives at [address]:

[map]

She had a stroke a few years ago that has significantly impaired her ability to communicate, and she also has dementia.

She also likes walking from her house to the playing field between XXX Lane and XXX Lane.

Recently her legs have started hurting while she is walking and she is getting a bit more confused in day to day life.

We aren’t able to stop her going walking on her good days (she is a stubborn old goat and would just escape anyway!) and I’m not sure it would be right to at this point, but we do have a concern that she might get too muddled to get home one day.

Should you see Mum wandering, could you either point her in the direction of her house or give my Dad (xxx) a call [XXX] .  He has breathing issues so can’t walk with her but in most instances will be able to get in the car to her.

Alternatively, I am on [XXX]  I live in Brighton, but can contact other family or friends more local if needed.

Thank you very much.  They say it takes a village to raise a child.  In this instance I think it might take a village to look out for one of its older folk.

And I took it to two places.

First – the village community shop.  It is literally the only shop in the village and I figured if I found someone who is lost, it might be the first place I’d check to see if they knew anything.  So they have a flyer behind the till for staff to be able to help out if needed.  I was worried there would be some judgement when I explained  what I was asking but the ladies there were so nice.  Mum used to volunteer there and actually one of the ladies knew who she was and that she’d been in with a friend last Friday for toast and marmalade…

And second, Amazing Friends Mum who has regular lunch meet ups with a small group of local ladies.  I went to have a chat with her and we decided I’d emailed her the flier so that she can email it around to them.

Dad has asked me to put something similar together to go in Mums pocket too, so that’s the next step (although I think we might have to wait for coat weather as she’s not going to take that willingly and we might have to place it by stealth!)

So now we have a kind of Neighbourhood (MummyW) Watch, even though she is unaware of it.  It’s made me so happy to know people are willing to help out.

And that’s one of the reasons for this post.  The more I read and research, the more I understand that openness in situations like this is pretty much the only way forward – to get understanding, to build a community and in this case, create an understanding safety network.  And yes, Mum of a few years ago would have been horrified if she’d known this was to come, but Mum of today needs to be safe and understood, and it’s only by talking about this, being honest and asking for support that we can build that for her and for others.

So, if you are in a similar situation, don’t be afraid to talk, or to ask for help for yourself of the people you care for; it keeps doors open that might otherwise be forced to close. 🙂

Posted in dementia, looking after Mum, memory, muddled life guide, Muddled Life Tip, stroke | Tagged , , , , | 1 Comment

Young people cooking destructions

Sometimes I (re) teach Mum to cook.  Sometimes I teach Stepson 1 in preparation for uni.  We’ve done a fair bit now as I mentioned in this post.

Stepson 1 did brilliantly in his A levels and is officially off to uni in a matter of weeks now.

And I realised that it’s all very well doing the teaching, however the likelihood of any of the recipes staying in his head are practically zero.

So along side kicking off his starter pack of pasta n sauce and super noodles, I’ve been writing out the recipes we’ve covered in a very non recipe book style, assuming no scales are available and there is limited kitchen competence.  I got it all laminated, printed, bound and…

…ta dah!

(That’s Mr R and both the stepsons cooking quite a few years back now – it seemed a suitably embarrassing photo to use.)

The recipes are very simple and very samey, in the hope that they will become automatic.  They are also mostly meat based as while he is happy to try a bit of our vegetarian food, he would not consider that a complete meal 🙄.  I’ve added veg in small amounts to all the recipes though, and am hoping that this steers him away from sausage and super noodes every night.

If you have a young person also about to go off and fend for themselves and this would be useful, give me a shout with your email address and I’ll ping you over a copy – you’ll just need to print it out 🙂

Posted in Cooking, family, step mum | Tagged , , , | Leave a comment

The Grump, The Smile, and the Nursey Percy Tuesday

The Grump:

Having been told that we can’t even go on the NHS waiting list for a memory assessment for Mum as it’s so long, but that we are on a waiting list to go on the waiting list – I took Mum to a private appointment for a memory assessment last Thursday.  The secondary reason was for the doctor to look at the MRI scans and reports done after her 999 trip to hospital in June to see if she had a stroke that day (another appointment on the NHS that we’re still waiting for…).

As you’re probably expecting, it didn’t go to plan.  Due to the severity of Mums stroke in 2021 and the fact that it affected the area of her brain that uses communication, the doctor couldn’t do the memory assessment he does, which is purely verbal.  And even if he could, Mum would not be able to take any of the four medications available to support people with dementia because the combination of tests strongly suggest that Mum didn’t have a stroke in June – she had a grand mal epileptic seizure and is probably having mini ones which are affecting her further. And apparently she also has a heart condition.  Some of the tablets can’t be taken with uncontrolled epilepsy, some can’t be taken with a heart condition.

So now we need to fix those things before going through the NHS assessment which we are on the waiting list for the waiting list for.  I guess the good news is that we have a significant amount of time to do that fixing in.  The less good news is that he can see evidence of dementia on Mums scans but that’s considered insufficient to be able to give a diagnosis…  Argh!

The Smile:

However, after getting rather shouty about going to see the doctor, and then telling me she was worried that he’d say she didn’t work properly so should be shot (!) Mum decided she liked the doctor.  I videoed this so I can play it back to her next time when we have the same conversation. (please excuse the chewing – I’d promised her a sweet if she was ‘good’ at the appointment 🙂):

And once I’d explained to her what the doctor had said (which obviously ten minutes later was an irretrievable memory) she agreed that I was right to make her go:

 

And The (Nursey) Percy Tuesday:

Mum wasn’t feeling great on Tuesday.  Dad told me not to visit as she wasn’t very chatty, but I have a secret weapon in (Nursey) Percy:

While I went to Tesco he worked his magic, and when I got back he supervised me showering Mum:

(‘Pog, do I have to make all my clothes inside out?’

‘You have to take your PJs off, Mum, yes’

‘Oh this is going to take ages!’)

Stole her slipper to encourage a bit of exercise:

 

 

 

 

 

 

 

 

Kept mum company while I broke her bed while I was changing the bedding, then fixed it:

And ultimately got her up and about and feeling a lot better:

The roller coaster continues… 🙂

 

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

A Moderate or rough; mainly fair Tuesday.

Yesterday was a mixed bag.  I had lovely Mum when I was videoing, slightly nuts Mum is Tesco (she got obsessed with finding ‘the thing that hasn’t bee there for ages but we used to get and I know where  it is now’.   It turned out to be the milk.  And it turned out Mum was not happy that we didn’t actually need milk after all that), and shouty mum who shouts that black is white and white is black.  The best example of that this week is when we got in from taking Percy to the park and I suggested mum washed her hands because of the Percy ball slobber covering them.  She walked past the sink so I suggested it again.

‘I AM!’ she shouted

‘The sink is here, Mum’ I pointed out

‘I’m using THIS ONE!’ she shouted back

‘That’s the cooker, Mum’

‘IT WASN’T YESTERDAY’ she shouted

‘Please stop shouting at me’ (I admit I might have done that irritatingly calm and quiet tone of voice at this point which probably didn’t help)

‘I AM NOT SHOUTING YOU ARE SHOUTING AT ME!’ Was the response.  But at least in all this she moved to the sink to wash her hands rather than continuing to try to use the cooker…

I blasted a bit of Abba.  I’m not sure it calmed either of us much.

And in other news, it turns out that a few days ago, Mum had to be rescued from a hedge.  If her recollection is right (and there is a huge possibility it isn’t), her legs started hurting on the way back from her walk and then they stopped working.  So  – as you do –  she had held onto a fence post until a neighbour she knew saw her, got her car and drove her the few hundred meters home.

The slight concern here is that Mum and Dad live in a tiny village that has no pavements, but very fast cars.  Trying to get Mum not go go walking would be pointless as she is too stubborn to actually listen to anyone, but also it’s the only exercise she gets and often her only ‘outing’ each day.  So what do you do?  I’ve been subtlety telling people we see that Mum is often out on her own and if she ever looks a little confused to point her in the direction of her house (it’s easy to direct people to as it is the last one in the village).  If she was able to use a phone (she isn’t) that would be great but there is no mobile signal up there anyway.  So I think the options are a label attached to her coat Paddington style with something like ‘If found, please look after this Mum and return her to XXX’ or maybe a series of ‘Wanted’ style posters around the village with a similar message.  Dad thinks she’d just tear them down; I don’t think she’d recognise herself…  We’re working on…something.

So there you go.  A variable Tuesday.  In shipping forecast terms, Moderate or rough. Mainly fair. 🙂

And here is Tuesday TV.  Tomorrow I’m going back to take her to see a private doctor for the memory assessment we can’t even get on the NHS waiting list for.  She knows she is going to a doctor but not why (as she will refuse to go).  As you’ll see, I think I might have my work cut out for me anyway 😬:

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

An open letter to the Blue Badge People

Dear Blue Badge People,

You’re kidding, right?

I mean, thanks for the reminder that in April that Mum’s Blue Badge (known as the Blue Peter Badge in our family) was due to run out in four months.  I did think that was a bit enthusiastic of you but obviously I underestimated the serious amount of time required to get through the miles and miles and miles of red tape that you feel is necessary.

I get that this is something that’s probably abused by many and you need to make a comprehensive process to apply for a badge as a result.  Please trust me when I say: you have absolutely overachieved in this area.

Initially, I thought I could probably fill in the details sitting in my own house 50 miles away from my parents.  I have my little black book of information and the previous application, after all.  But no…that would not contain the required length of red tape, would it?  What you told me I needed was:

A recent digital photo showing Mum’s head and shoulders.

A photo or scan of her:

  • proof of identity (such as a birth certificate, passport or driving licence)
  • proof of address (such as a Council Tax bill or government letter)
  • proof of benefits (if you get any)

You’ll also need to know:

  • your National Insurance number (if you have one)
  • the details of your current Blue Badge (if you’re reapplying)

 

What you didn’t tell me is that I also needed details of all her medication and answers to many questions about mobility, walking, understanding of safety issues…and medical documentation to back it all up, and a lot of time.

So, I popped my laptop in my bag the next Tuesday I was visiting and settled in to get the blue badging done…

…And straight away we had a few issues.  We couldn’t find a recent proof of address.  The Council Tax bill had gone AWOL and all Mums government letters – pension and Attendance Allowance – come to me at my address (we’ve no idea how that happened but suspect it’s something to do with the Attendance Allowance application), so we were officially stuck before we’d really started.

We muddled through though with an alternative you didn’t suggest and got to the surprise question about all the medications Mum takes and what they are for (I’m not sure the detail was right as nobody medical has thought to write down what they are for and Mum and Dad don’t know, so Dr Google had to help with that one.)

Then we moved on to the open questions which I answered in detail before I saw that you needed medical documentation to back it all up.  At this point – four months ago – Mum had not been seen by a doctor since her stroke.  She’d seen her oncologist, but actually that side of things is irrelevant here.  I did explain in detail though, how she probably doesn’t see the danger of other cars, has to be watched like a hawk at crossings and tends to reach for a hand to hold as we walk through car parks.  Trying to get her in and out the car without having the door fully open just wouldn’t be possible either.

As I typed, Mum kept saying (with an insight that surprised me) ‘but what if I was a little old lady who had to do this on my own?  How would I do all that?’  And that is the biggest problem here, Blue Badge People.  The very individuals who most need the support of a badge are the ones least likely to be able to navigate the system.  And unless they have someone to help out nearby, they are stuck.

Anyway, I took a photo of her looking especially cute for the application (do you like the daisy chain?  It turns out Mum has been keeping the ones I make her each week in her room, bless her.)

And I submitted it.  That was the 18th of April.  On Friday 7th June, I received an email from you to tell me ‘Your Blue Badge application has been passed to the assessment team.’

It took you SEVEN WEEKS AND ONE DAY to look at the application?  And then you told me that ‘Due to increased demand, applications that require a full assessment are currently taking up to 15 weeks to be processed’???!

Three years ago, when I phoned you told me it would take 12 weeks for the first application I made to be reviewed.  I applied as Mum was leaving hospital as we I’d stupidly thought it would be a bit faster than a three-month process – and I guess we’d hoped she wouldn’t need that level of support when she was ‘better’.  When I called to ask if there was an interim option, I could use to be able to take Mum out I was told ‘she will just have to stay at home’.

So, I guess I was daft to think reapplying would be easier or faster.  My worry was that you’ll turn the application down until I could get medical evidence to support the application.

Ultimately, the renewal has come though, almost four months to the day, and for that I am grateful.  I was anticipating having to chase you and get supporting doctors notes, while allowing an extra 30 minutes every time we went out to allow for the extra time park on the outskirts of car parks to get the space we need to open the doors and then walk at Mum speed (a slow shuffle) to Tesco, hospital appointments and the like.  So, thank you for not making me go through that alongside All The Other Stuff.

However, please know: Your system is broken.

  1. It is hard for a (theoretically) fully functioning, computer literate person to use; it would be beyond many who need it
  2. It takes too long to process initial applications

My suggestions:

  1. When you send the reminder email, rather than giving people the link that you do (kent.gov.uk) to reapply which then needs a lot of hunting through menus and at least 5 clicks to get to the page I suggest you send to the actual renewal page (https://www.gov.uk/apply-blue-badge).
  2. Alternatively, for reapplications, provide the previous detail and ask the user to update accordingly, rather than having to start from scratch. As people get older, even proof of address and ID become tricky as these things are no longer in use / in their name.  As you already proved who they are in their initial application, assume that they are still the same person.
  3. When you list what is needed before the application is started, mention the fact you need medications, what they are for, the frequency of taking them and details of doctors appointments. This take time to collate and often a physical presence (my Mum would not have been able to give me these details over the phone as she just doesn’t know them).
  4. Have fewer open ended questions. The answers to these must differ significantly depending on  everything from how articulate the person answering is to what technology they are using to complete the form. And interpretation is entirely subjective anyway.
  5. Don’t assume people are completing the form on a laptop – I was, and it took a significant amount of time. If I was having to use a phone or an ipad as many would, it would have been far harder to complete and taken a huge amount more time to complete without a full sized key board.
  6. Please, just think about who your end user is and if that were your mum, dad, sibling or child, think about how they would struggle with the system in its current state.

And those, Blue Badge People, are my thoughts on that.

Warm wishes,

My Mum’s admin person.

Posted in dementia, family, looking after Mum, stroke | Tagged , , , | 3 Comments

The more chaotic than usual Tuesday

Why?

Because I decided to help my sisters out with summer holiday child care I’d have Little Pea and Little Wisp along on my Tuesday with Mummy W.

It was chaos…but good chaos mostly 🙂

(Although the lovely cashier in Tesco who is starting to feel like a Tuesday friend did say she was concerned for my sanity…!)

 

(Nanny did get a bunch of flowers as she always does, but…you know… 😉)

And when the kids left, I reminded Mum that she’d asked for some new wool and chosen it online, so I’d ordered it for her to knit herself a gilet type thing.  I created a pattern of three oblongs and I’m hoping that I’ll be able to do any shaping with crochet…

I’d not help out much hope that Mum would remember the plan or actually want to do any, but we sat down to start her off, and according to day she stayed there well after I left – over two hours!  (Today she has forgotten how to knit and Dad had to bring their neighbour in to remind her that she has to use both knitting needles, but I’m told these things come and go.  I’d not realised it was so fast, but you learn something new everyday.  And maybe tomorrow it will be instinctive again.) 🙂

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

Ten years ago…it started with a fridge

Ten years ago I did possibly the bravest thing I will ever do in my life. It started with a fridge.

It’s a long story that I wrote a separate blog about, but with a huge amount of support from an American colleague I’d never met, who became a friend, we raised £7000 and separately went to Tacloban to stay with her Filipino family and use the money to help support people rebuilding their lives after typhoon Yolanda, which had killed thousands of people.

It was brave because I didn’t like travelling alone, I didn’t like eating new things, I wasn’t great at meeting new people, I didn’t like staying with people I didn’t know and I had very little self confidence. It wasn’t a terribly well thought out plan.

But it was life changing.

And this morning I woke up to am email from a Filipino writer living in New York who was asking if he could talk to me about one of my experiences there for some writing he is doing. He linked to the specific post I’d written and I clicked on it to remind myself. And I was back there.

I can’t believe I did that trip. But my bravery was nothing in comparison to that of Sister Helen and Sister Aurea, who the writer has contacted me about.

If Sister Helen gives her permission, I will speak to him as her story is one I think should be heard far and wide forever. For now though, I’ll share with you what she gave me permission to write back then, because some days feel dark. And then you get to meet or even just hear about someone who is actual light, and that can restore faith in something.

I hope this does for you (you might want a tissue, though) 🙂

Posted in Pog Life, Tacloban, travelling | Tagged , , , , | Leave a comment

The Puzzle solving Tuesday

It turns out that Mum has forgotten that she is a demon knitter.

Post stroke and with her slightly muddled head it’s the skill she could still do without thinking.  Last winter we had hats and scarves made for us – maybe not as intricately or perfectly as the cable knitted dresses and jumpers she made us in years gone by, but she could still do it.  In March with the weather getting warmer we moved from hats and scarves to The Tuesday Blanket.

Mum stopped knitting around may or June saying she didn’t want to…but when we were chatting at the hospital the other day it turned out that she wasn’t sure if she could knit. So this week I talked her through what she’d done in the last few months. And…well, you’ll see on the video 😕

And in an attempt to get her brain a little more active, I bought a puzzle book designed for people with dementia.  She was so proud when we finished one of each puzzle together…even if the initial enthusiasm was a little lacking 😀

Posted in dementia, family, looking after Mum, memory, stroke, Tuesday, Tuesday blanket, Tuesday TV, Uncategorized | Tagged , | 1 Comment

Log flumes and Rollercoasters

Last Tuesday I took Mum to have lunch with a friend.

Then I went for lunch with a friend.  And it was lovely.

But apart from that, last Tuesday was a tricky day.

When I got to Mum and Dads they’d had a letter from the memory clinic.  We’ve managed to get mum to blood test, ECGs and an MRI so that the clinic have everything they need to see her and I was expecting it to be an appointment.  I’d been warned it could be an appointment for 6 months time, but at least we were getting closer (And it’s suddenly important as after being told about 6 months ago when I asked about sorting this out that ‘it wasn’t needed really while your Dad is around’, I’ve now found out that without a diagnosis we can’t access a lot of the support out there that Mum is starting to need.  And nobody can provide any medication other than the clinic, after diagnosis).

But the letter said:

‘We currently have a much longer waiting list than usual for our memory assessment service.  Regrettably this means we are unable to offer you an appointment at the moment.  We appreciate that this is perhaps not what you were expecting to hear.  Please know that we’ll be back in touch as soon as we have an available appointment for you.’***

I decided that we needed to do our own things to help Mum instead, so in Tesco I started looking at children’s puzzle books.  Mum asked ‘Why?’ and I told her that I thought it would be a fun thing to do together. She said she absolutely would not do a puzzle even if I bought it and refused to move herself or the trolley until I moved away without the book.  And it makes me so cross that it seems like she doesn’t want to help herself. (And yes, I can do all the therapy to understand why she would feel that way, but I couldn’t stop my cross feelings.)

Later I offered to look at the pubs online menu with her to decide what she would like for lunch when she got there.  Mum got cross because I was interfering and said she COULD READ.  (She can’t).  More crossness.

Mum and the shoes she told me she’d put on ‘inside out’.

Then she got panicked about being late, so we got there really early and she refused to get out of the car until she knew her friend was already there even though I was going in with her.  She stopped talking to me when I (crossly) said she had to get out as I couldn’t see if her friend had arrived until we got inside…

So all that made me cross.  But I think mostly it was the memory clinic issue that kicked it all off.

Tuesday felt like I was being propelled downwards very fast, with no up insight – more log flume than rollercoaster.

 

On Thursday last week Mum had an appointment with her oncologist.  Before covid and before her stroke she had been diagnosed with her fourth different type of cancer – lymphoma. This appointment was to see if she was in the clear.  In the car on the way there, Mum wouldn’t talk to me as I’d driven the motorway route to the hospital and she had wanted to go ‘her’ way.  When I asked if she’d chat to me she told me that ‘it’s a no talking day’.  So we drove in silence until she recognised the road and directed me (correctly) to the car park).

Mum pointed out the consultant to me.   I wondered if she was right as he looked very young but the man next to me confirmed it was him.  ‘We call him ‘Elvis’.  He told me.

The doctor was a skinny black man, about seven foot tall; I wondered if he was an impersonator on the side or maybe sang Elvis songs to his patients as he examined them.  When he called us in I asked ‘why do they call you Elvis?’

‘Um…because it’s my name’

I mean…obviously 🤦🏼‍♀️

So, Elvis gave mum a practically clean bill of health – at this stage post chemo, the cells are unlikely to reawaken from their dormant state so she is officially in remission.  He looked at her bloods and pointed out that she is also pre-diabetic too, but I think we’ll pick our battles; at this point and that isn’t one we’re willing to spend time on – we’d rather get the woman to drink a bit of water occasionally.  Demonstrating the level of battle it would be , Mum informed both of us that ‘I don’t eat much sweet stuff anyway’. (She’s obviously forgotten that I do their shopping and know exactly how many bars of chocolate and packets of biscuits she makes her way through a week!)

When we left I asked her to do a ‘hooray’ pose for a photo.  ‘What are we hooraying?’ she asked.

She looked so happy when I reminded her – it was like getting to be the one to break the good news.  It’s a side of this horrible disease I’d not thought about – being able to get excited over and over about something because you forgot you already did that. Something  to celebrate on this rollercoaster of dementia. 🙂

 

***I called the next day.  Apparently, there are 100s of people waiting to be given appointments.  Those appointments are at the moment 3 months out.  It could be six months to a year before Mum is actually seen.  Plan B is now in progress.

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

Broaching a tricky subject…and not being amazingly successful 🤦🏼‍♀️

After our hospital excitement the week before last I took both Mum and Dad to their GP; Mum because the hospital told me to in order to get her an MRI scan and Dad because his breathing was worse than it’s ever been.

Most of that is a whole other post, but as a result of the visit, the GP referred us to a Social Prescriber (who knew that was a job title?)  and a group called Alzheimer’s and Dementia Support Services.  Within a week both had contacted me and gave me a lot of information  – which I’ll pop on a Muddled Life Practical Tip post and pop it on the resources page as once again, I’d never have found the information on my own as I didn’t know it was there to find 🙄

So anyway, as a result of all that, it’s clear that there are resources available…if you’re open to using them.  And we know that Mum is very, very unlikely to agree to engage with any of them at the moment (because she is the most stubborn person I know and also because she still seems pretty convinced that there is no part of her that needs support), but they would really help to stimulate her brain, create social connections and give dad some respite.

Both the lovely ladies who called agreed that maybe the first step was to have a carer come to visit mum each week under the guise of ‘a friend’ and rather than doing anything personal, take Mum for a walk or a coffee and just get to know her.  Later on that person could help with more and we could then perhaps integrate with a memory cafe or a day centre.

I brought it up with Mum.  I didn’t want to use the word ‘carer’ or make it sound like anything official, so I suggested we find another Pog to go for walks with. I think it’s safe to say right now Mum 1) does not want an additional Pog and 2) didn’t seem to quite grasp the concept… (‘where would I put them afterwards?! 🤦🏼‍♀️ )

You can see for yourself on this weeks Tuesday TV.  And as you’ll also see, after my rub-a-dub-dubbing, maybe I should just suggest getting a Pog in who knows how to dry hair a bit better than me! In fact, maybe I should suggest an additional Sister 1 or Sister 2 – maybe that’s what she is hanging out for 🙂

 

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