Notes from my 2025 Diary - DAD (aka Pogsy)

Edited, mostly for location identifiers... although I really do call the local shop 'not-Athwal'. Additional comments in red.

TRIGGER WARNING!!!
This is my notes leading up to, and describing, the death of my father. It's also quite sweary.

It was going through my diary re: mum that made me realise there were warning signs before I had realised. I'm really glad I decided to put all this in one timeline because, once again, it's not exactly how I remember it going.

1 Jan - Dad's not well.

2 Jan - Dad said "I'm sorry about having a go at you about money yesterday" and then proceeded to have a go at me about money today. 

11 Jan - Dad went off at me for saying 'Kia ora' AGAIN. This time with a full-on rant of how I shouldn't speak foreign languages in, and I quote, HIS COUNTRY. Racist old bastard.

I have been trying out 'Kia ora' because mum has traumatised me with the word 'hello'.

12 Jan - When I got back home dad was a dickhead about keeping the vegan and non vegan stuff from cross contamination.

My dad could be such a jerk. I've been vegan since 2014 following a realisation in 2012 that I'm probably lactose intolerant (GP refused to test). This isn't new; it's both a protected ethical stance and vital to my health. In hindsight I wonder how much of this was his usual bloody-minded argumentative streak and how much may have been missed warning signs that something was going seriously wrong.

15 Jan - Mum agreed to go out AGAIN much to dad's horror. Poor old fart. He's really feeling the cold this winter...

17 Jan - Dad had some gastric trouble and was also accepting he needs more exercise but will NOT go [place name redacted] and will NOT explain why.

18 Jan - ...walked Pogsy round the block. He tried walking fast to BRING DOWN HIS BLOOD PRESSURE. I worry about that idiot.

20 Jan - Took mum for a loop up to the doctor's surgery (her last trip out). Dad had a hissy fit that the way back (via park) was *so much* further. Got home and showed him on Google Maps - way there 0.8 miles, way back 1.1 miles. Total of 3.06km which is SHORTER than our (usual) meadow loop (which he walks easily)

22 Jan - Rang dad to help get [mum] up as per usual and he asked me to come round. Uh oh. He's not well. Breathless. Couldn't lift her. More than a bit worried about the state of him.
He accepted being here all day with no complaints.

This is so important to me. This is the real indicator that there was trouble looming. He was breathless BEFORE the 'flu, and accepting being here so I can watch over him shows something's up. He did not take kindly to being 'babysat'. He lived right next door but leaving mum to go check on him was increasingly problematic.

27 Jan - Dad called me out into the garden cos the sky was all pink... at sunset!

Sure, he's 82 but he's not doolally. I really should've seen this confusion as more alarming than funny.

31 Jan - contracted the 'flu which I later passed to dad. Until the time of writing (28 Jul) I had believed that giving him that lurgy is what ultimately killed him.

7 Feb - He sat up to take some paracetamol, yelled my name three times and yeeted himself into a weird faceplant situation. Bloody hell.

9 Feb - Dad continues unwell. Erin been checking in on him.

10 Feb - Dad still abed also.

14 Feb - Mum died. Dad came round for a bit to see her.

15 Feb - Went to see Pogsy. He hasn't slept.

22 Feb - Today I walked dad up to the bottle bank & back. This is because (a) he is still feeling very poorly (he had to stop multiple times inc. sitting on both benches) and (b) the Donkee (an oversized Sholley Trolley - that's literally what it's called) was getting worryingly full.

24 Feb - I don't like dad's colour.

I *think* this was when I asked dad if he was having a heart attack. This is why he booked the doctor's appointment (18 Mar). This is where I thought it began. Ten days after mum.

25 Feb - accompanied him to a routine hospital appointment.

I had been unavailable to escort him previously because I was looking after mum, but he also would never have asked if he felt up to going alone.

26 Feb - Walked dad up to the [bottle bank] again. He's not just sickly, he's now got anxiety / panic attacks because he's feeling weak and vulnerable.

This 'anxiety' may well also be a symptom of what was underlying...

27 Feb - Walked the Pogsy

2 Mar - Dad's decided to forego his walk and isn't coming back out.

6 Mar - Dad's obviously feeling better - went around to check on him and he picked TWO (2) separate arguments so I left the grumpy old sod to his own devices for the rest of the day - some peace and quiet at last!

17 Mar - Dad wants me to go with him to the doctors tomorrow.

18 Mar - walked dad home (from the doctors) because he needed to test it out - he has to go back for an ECG tomorrow morning before his bus pass kicks in. He managed it, but not well.

Typical Pogsy. Use the bus pass or walk, there is no 'buy a ticket' option. Can't possibly spend money!

19 Mar - Escorted dad up to the doctors and he had the ECG - he's being referred to the hospital for a proper one.
Yep, we're into some scary territory. He has atrial arrhythmia.

There was also a lot of drama re: prescriptions this day as they raced to get him on a whole bunch of medications. This was properly out of nowhere so he wasn't on any of them already. He had other health issues but nothing heart-related.

20 Mar - Dad chasing up doctors, two pharmacists, and 111 because his new meds are contraindicated! He has Reynaud's, low BP, dizziness, etc. which all come under the "do not take if" heading.

21 Mar - The doctor has told dad to take the meds - low blood pressure and Reynaud's be damned!

This still seems bonkers to me. Heart medications seem to presume hypertension. You shouldn't have to trade off one medical condition to treat another.

24 Mar - Dad's got a semi-urgent appointment at [the hospital for a pre-existing situation] tomorrow.

25 Mar - So we went to the [hospital] & dad got checked. He's okay but they're having him back for tests first thing on Thursday so there's obviously some concern.

Partly mild symptoms, partly the new cardiac complication.

27 Mar - Hospital with Pogsy again.

31 Mar - Dad had wanted to come to town with me the following day but... Don't think it's going to happen though. I went to fetch him for dinner and he couldn't make it across his damn patio! Poor old man was crying - I've never seen him cry before. Not when my mum died, not when HIS mum died, not even when Guinny died (family cat, 1990).
THIS IS BAD.

1 Apr - Dad did go to town; I left him at the bus stop, hared up there and met him off the bus!

Then we walked home. Dad was very slow & puffing, had to stop a few times but he made it.
Also, he used a walking pole in public! So proud of him.

Like many men he was initially resistant to using a stick, frame, or wheelchair - especially in public. Later on I'd have to bully him a bit - if he wanted to stay at home he'd have to play it safe to avoid falls.

2 Apr - Dad has been Googling pneumonia [...] is it possible the heart issue is all (or mostly) down to a chest infection?!

5 Apr - Dad said he was 'fine' and 'can you take me to A&E tomorrow?' in the same sentence.

6 Apr - So, my guess of pneumonia was wrong. *DAD IS IN HEART FAILURE*
50 days since mum. Bloody hell.
The ER doctor was perfectly nice but didn't sugar-coat it - my dad has TMB - too many birthdays.
His pulse is erratic and fluctuating 112-131BPM. For a 60-79 yr old (I couldn't find 82) 86-95 is 'poor'.
His oxygen levels are great but he's struggling to breathe because (a) his heart is running a marathon (b) fluid is building up around his lungs.
He's been admitted to AMU (where mum was first week in [the hospital]) put on diuretics and a fluid restriction.

This was honestly pretty awful, remembering mum getting wheeled into that same ward. Then there was getting Erin aside (who'd stayed in the A&E waiting room until admission) so I could break the news to her away from Pogsy.

Hopefully we won't need it but I got him to tell me [his EPoA] still existed and where he thought it was (it wasn't but we found it).

Dad has asked if he can move in or if I will go next door [his house] cos he's scared they won't discharge him to live alone.
Of course.
Have plotted out a selection of plans depending on where we find ourselves.
FUCK FUCK FUCK FUCK FUCK FUCK FUCK 

7 Apr - did a load of shopping so dad has a dedicated hospital bag given that admissions are likely. Dad was discharged at 7pm. THIS WAS HIS *ONLY* NIGHT IN HOSPITAL EVER.

8 Apr - Dad had a shower at mine - didn't go well.
I am unlikely to be going back to work. FML.
Still going ahead with the playroom but arranging it so he can move in for next winter - figuring out how the library can be a TV room for him as easier to keep warm.

9 Apr - dad's first appointment at VACU - issued with mini ECG gizmo and BP monitor. Dad had a new will written; in part due to illness but mostly because of stuff that came to light dealing with mum's affairs.

Today I did dad's whiteboard cos he's struggling to keep track of his meds.

Everyone has LOVED the whiteboard - doctors, nurses, paramedics... the coroner's people. Not only a great way to keep track of things but absolutely brilliant when you're struggling to remember basic info cos you're sick or in shock. But starting dad's so soon after erasing mum's was quite challenging.

13 Apr - Had a really weird dream that was more like a "visitation"... only it was my dad. Definitely weird as he's still alive!

I remember this... it's like I was aware I was sleeping and I felt him come in and scoop me up like I was a little kid...

14 Apr - Dad's oh-so-urgent appt was a BP check and a blood test because of the new meds. Absolute pisstake and so much stress - could've done it at tomorrow's appointment which is now cancelled.

They'd tried to call him in on a Sunday when there are no buses to the hospital and taxis cost more.

15 Apr - back to the hospital for ECG and Holter fitting. This was when the 'original' GP referral for an ECG was supposed to be. Things went sideways A LOT so that didn't happen.

16 Apr -  Why my dad can't stay quiet for maybe 20 seconds so I can hear the ping that the ECG email has sent I have no idea. Dropped the Holter off.

23 Apr - Got dad's will witnessed in the evening.

24 Apr - Dad got his echo for all his heart rate is still way too fast (116/117 regardless of medications through the whole ordeal). They told us his heart ejection factor [sic] is 10-15% (should be 50%+) a normal ejection fraction is actually 55-70% and according to dad's records his was 17%. He's been told he's at the more severe end of the heart failure spectrum but there's still things they can try, including yet more drugs (cardioversion and ablation mentioned)

26 Apr - Around 4pm dad called. I had Erni come as I had heebie-jeebies. A good job too! He was having chest pain and while I was assessing him VACU called and they told me to call and ambulance - so I did!
Possibly angina or reflux but it was at least a false alarm. Got in at a few minutes to midnight.

Honestly, this much stress and exertion for someone in heart failure can't be good?

30 Apr -  Different doctor (at VACU). Had to go over EVERYTHING again. Apparently dad's records say he had a BPM in the seventies last week... bullcrap! It dipped briefly into the 90s at A&E on Saturday but we've never got anywhere close to that!
He was quite grim about how little there is they can offer for now and is asking Cardiology to see him sooner than June.

I killed my dad, didn't I? I got the fucking 'flu, gave it to him, and now he's going to die cos he's old and the meds aren't working. Shit.

And now I can see - via my own observations - that he was actually unwell before he got my 'flu. Probably that exacerbated it but it's not my fault.

1 May - Got home to discover dad very not well & freaked out cos I wasn't home (he knew I was going to [town]). I have apologised for messing him up and he says it's not my fault but it feels like it is. Dad actually staggered round later. He's worried by me being upset - OF COURSE I'M BLOODY UPSET! - and he wanted to check up on me.

On this day dad got taken off one of his regular meds due to the heart failure... and the removal of that drug from his regimen let in part to his death.

3 May - Cleared out the suntrap.

Dad loved working in his garden but I am so happy he finally got to just sit out there and enjoy it... The suntrap was filled with old buckets, watering cans, and plant pots as well as being practically inaccessible with weeds.

Dad's worst home ECG to date - so many blips! Also, all BPs under 90, all BPMs around 118.

5 May - Got excited about dad's BPM - 73 & 60! Of course, it was a fucking glitch -117 & 120. It was nice to experience the joy of how it'd be for the meds to finally work but I guess that means it'll never happen.
Honestly, I've been through a lot of shit, these past 7 years especially, but today was HORRIFIC.

7 May - Visit to VACU. He used the wheelchair for the first time.

9 May - Discharged from VACU as cardiology are picking him up from Monday

11 May - Dad's really not well [...] did him an ECG this morning with a BPM of 120 and a really irregular graph (skipping every third beat).

12 May - The long awaited Cardiac appointment was a bust. They have 'tweaked' his meds back to a dosage he's been on before and told him to come back in FOUR WEEKS! No mention of the cardioversion or anything else. We reckon they've given up. He's being referred to some community cardiac care team. BP machine & ECG gizmo returned to VACU.
Dad needed the wheelchair almost the whole time today.

I was so angry. VACU had been checking in with us almost every day and seeing him at least twice each week and then it's all 'see you in a month'?! The drugs aren't going to miraculously start working - he needed a cardioversion scheduled.

13 May - Dad had a dizzy spell. Face planted the bed. Called me to help him up. Then I taught him (willing to learn) to use the walking frame.
The 4 wk appt came through - with a cardiac NURSE. They've definitely given up.

17 May - Got a message from B to go check on dad because he had a "question". Apparently he didn't have a question - B had told him to get me to stay over! So here I am, doing as B tells me - back on my sofa in the attic [at dad's].

20 May - I am so glad B came to see dad - it's been years but he misses her dreadfully.

21 May - Dad had a really bad day. Late afternoon he came over all dizzy and loopy and when I was trying to reassure him / get him vertical he was flailing almost seizure-like.
Early evening he had a similar thing only in bed and couldn't get up.
It's all quite frightening.

23 May - It started at 0530 when dad rang his bell. He'd got stuck on his back so I righted him.
At 0830 it happened again and OMG he was deathly pale - his face matched his HAIR!

Not doing great. It's hard seeing dad deteriorate so rapidly.

1 June - Got dad moved in. Lots of going back and forth for me. He only did the single one-way trip but he's really done-in from it.

I had redecorated the room mum had been using. New carpet and everything. By this point he really needed the medical bed (which was actually our property, along with the wheelchair, walking frame and almost all of mum's care supplies. The few loaner items had long since been returned.)

4 June - Dad sat out for a bit but there was a helicopter miles away and the noise totally did him in.

8 June - Dad wanted to go round to his house and clear out his fridge so we did that... and in it I found a Glyceryl Trinitrate spray prescribed to my dad NINE YEARS AGO. I *knew* there was a mention of angina years ago but [when I brought it up] dad yelled at me and called me a liar.

9 June - Dad had a bad day to start with. Went to bed mid morning then didn't get up for lunch. Instead he wanted to face the other way... and missed! Could only get out of that position by doing a Mork-from-Ork impression. Then he 'walked' round the bed and got in from the other side.
He got up mid afternoon, had his lunch (slowly) and snoozed for a while... Then he kind of snapped out of it and was fine for the afternoon - went out and sat in the suntrap!

10 June - Got woken up mid-dream by dad - rushed in and he wasn't there! Instead he was in the kitchen, on his knees, head in the fridge and rather stuck. Got him up eventually, he had his breakfast, a puff, and went back to bed to recover!
Got the call from the community cardiac team. Bloody hopeless. All the same questions, making stupid statements like the drugs are working, and then I had to go full Karen to get him a home visit WHICH IS WHAT WE WERE WAITING ON THIS CALL FOR.
Got a call from [GP surgery] - dad's DNR is READY FOR COLLECTION. What the actual fuck?! They didn't even need to see him?? Talk to HIM??

Again, so angry. First at the community cardiac care team who didn't even want to see him despite being desperately ill. Second at the GP surgery for issuing a DNR without discussing it with HIM. I didn't even have power of attorney for him - I thought the questions I'd answered were a precursor to them coming out to assess his situation!

11 June - Dad had a total bitch fit because he wouldn't answer whether he wanted his lunch?! and because he asked a stupid question?! Anyway, he's stropped off back to his house.
Honestly, I think he's had some kind of 'event' today but I've had enough of his shit over the years.
Brought dad back c. 10:30pm. He's not very well.

12 June - Dad continues pretty poorly - hallucinations may be ominous.

13 June - Dad's still spinning. I rather think he's shutting down. It's awful because he seems more aware of it [than mum did].
Dad went out in the garden three times today. He's really struggling but at least he's enjoying that.

15 June - FATHER'S DAY. Dad had post including an NHS letter saying he's in heart failure stage 3 which is just bollocks. It's stage 4 for sure.

We're not medically trained but my daughters and I each researched this and the criteria are plainly stated. We even have a later letter - dated about 10 days before he died - stating he was stage 2 to stage 3. We laughed at that. Ludicrous.

18 June - Dad's community cardiac nurse appt was... weird. She couldn't even work her won ECG machine! BP was 90 over something. BPM 117 like always. This seemed to bother her for some reason.
The nurse called insisting we went to A&E. She told me she'd spoken to a cardiologist and they wanted to see him.
THIS WAS A LIE.
She called out an ambulance. The paramedics also talked us into going. At A&E [the male paramedic] (who was several sandwiches short of a picnic) said he'd spoken to someone from cardiology at admission.
THIS WAS ALSO A LIE.
A&E had no idea why we were there as there were no new symptoms, no worsening, no changes at all. There was also no contact with cardiology but they wanted to admit him [...] dad did a big "fuck that" and discharged himself against advice.
Despite being told he couldn't walk [...] into A&E we walked out of A&E and caught the [bus] home.
Total bloody pisstake IMHO. Never been impressed with NHS but this total lack of joined-up thinking is beyond ridiculous.

Again: angry. Not only incredibly dishonest but entirely too much stress to put him through for no damn reason.

20 June - AMAZING NEWS!! Dad has *finally* been booked in for his cardioversion on 8 July (2 1/2 weeks). No guarantees of course but they're finally gonna *try* and he may feel a lot better for it.

I hadn't held out much hope for this appointment but given dad's attendance at A&E two days earlier the nurse had got straight on to a cardiologist about a referral on seeing his notes! I was beyond grateful. 
That evening I was at a gig in Wales, on quite the high thinking he might finally get 'better' and I'd have my dad around for a bit longer. Even if *only* the six to twelve months life expectancy that stage 4 has. As it was - diagnosis of heart failure to death was slightly shy of THREE months.

23 June - Planted mum's [memorial] magnolia today. Had a bit of a job getting it in [...] dad, the blithering idiot, came out and did some digging. Had a bit of a freak out...

Later this day I had a failed bonfire in dad's garden - I set fire to the actual garden! Erin and I had a mad time trying to put it out!

Dad took the news fairly well - the damage was pretty limited, thank the gods.

24 June - Rough night with dad. Chest pain, couldn't get up, couldn't get comfortable. I really hope the cardioversion helps but I can't help worrying it'll happen again and he'll have to suffer this all over (and over?)

25 June - Dad having a really rough day.
Didn't get out of bed until about 11am. Had a couple of lie-downs. Went back to bed by 4pm - breathing difficulties, coughing up froth, couldn't get comfy. 
Got up for an hour or so about 7pm, then crawled back in his pit.
Only ate his bao meal today.
Asked me to message B not to call / text him cos he's feeling so rough.

Erin told me she has the heebie-jeebies about the 8th of July. Can't shake the feeling he'll die soon. Somewhere around here I suggested the 4th of July... I didn't write it down but Erin will vouch for me.

28 June - Dad had an okay day yesterday... up until the evening where he suddenly went all squiffy, started shaking like a leaf. Had to hold him for a good while.
Today has been TERRIBLE. He's only been out of bed to go to the loo; nausea, retching, vomiting. Not fun.

29 June - Dad a little more vertical today.

30 June - I was incredibly sick overnight with what I took to be heat exhaustion (which I also presumed explained dad's unwellness)

I can hear dad up and down to the loo like a yo-yo and I'm well aware I can't look after him when I'm like this. I feel like death.
He's really very not well but still adamant he doesn't want to go to hospital.

1 July - Dad had another terrible night. About 5am I got Erin up for a second opinion. We decided to call an ambulance (A).
They also thought it was a raging UTI (the penny only dropped for me at 5am) but in other news:
His BPM was 62
His BP was 140-something over 60-something
I.E. NORMAL. Fucking hell!!
Keeping Erni home today (B) so she can get the 'script (the paramedics liaised with the GP for a prescription for antibiotics) and be on duty so I can have a rest.
Last night 45 mins sleep
Night before 5 hours, almost continuous.
One before that, 4 hours, in 3 bits.
Less than 10 hours sleep in 72. Feeling quite shit on top of still being sickly.
Erin got the meds.
Dad continues exceedingly rough.
In the evening he lost the plot, did some weird counting (C), and asked if we "won".
He failed a stroke test but mostly due to a lack of cooperation. He was a good bit more himself after being unceremoniously hosed off in a cold shower (D).

(A) As much as he didn't want to run the risk of another admission we were only a week from his cardioversion appointment - simply couldn't risk him being too sick to have it after all this. The UTI was likely a result of the medicine he was taken off back on 1 May.
In hindsight I should have realised that those 'normal' readings after months of really bad ones was ominous AF.
(B) I wouldn't normally ask Erin to stay home to help like that; she had very few days off to help with mum although I'd had dad to help with her most of the time. I've been sick whilst caring before - flu, colds, covid twice, a bad reaction to having a tooth extracted, once a bad reaction to a pizza (99.9% sure I didn't get the vegan one I'd ordered) - but I am seven years run down and I simply couldn't cope.
Dad was almost certainly no heavier than mum (she was a chonk to the end) but he was taller so I couldn't lift him so well - I'm 5' 8", mum had shrunk a bit from her original 5' 6", and dad was still about 5' 11".
(C) I swear my mum did something VERY similar during one of her 'turns' (possibly further strokes) so it was very disconcerting.
(D) This wasn't cruelty: my thermometer is faulty, he was running a wicked fever.

2 July - Another bad night - two huge shaking fits (1st at least 1 1/2 hours, 2nd more like an hour) and several rounds of vomiting. Also gastrointestinal distress. Getting his meds down = huge challenge.

Erin off work again to help. This is BAD.

3 July - It's 4:30am and I've barely had an hour's sleep.
There's been visits to the loo... There's been vomiting / spitting... There's been uncomfortable and shivering. There's been the 'emergency' of "is my stomach bloated?" Like dude, I have no idea. You're sick, you're on a lot of meds, you're not eating (less than can of fruit salad yesterday), your muscle tone & posture have gone all squiffy.
Anyway, at 4:30 there was [an event] that required Erni to come help with a shower.
Poor kid but the nights are the WORST.

Erin managed to get to work today but in consequence dad had to suffer the indignities of the commode because I couldn't get him to the bathroom safely alone.
We did our first and, as it happens, ONLY bed bath that night.

4 July - Another badly disturbed night. Erin and I were up to dad about 4:30am again. He called for help but once on the commode was all of a flop - staring ahead and totally unresponsive. He was so much like mum just before she died... so I naively thought we might be in our final couple of weeks.
Afterwards Erin and I had a bit of a heart-to-heart. I finally acknowledged the cardioversion wouldn't be happening. I could also see that I wasn't going to be able to look after him solo. We decided that I would look after him as bed-bound today, see what the weekend brought and make a decision from there.
Then he called us back.
Another commode flop / stare / unresponsive episode. It was about 5:30am when we all got back to bed. Dad must've died right after...

Independence Day... apt for becoming an orphan.
Also easy to remember like mum and Valentine's Day.
I found mum at 7:40pm; Erin looked in on dad at 7:40am... and came to tell me he didn't seem to be breathing. I went and checked. Unlike mum he was very definitely gone.
20 weeks apart.

It was all incredibly fast in comparison to what mum endured. Erin has stated more than once that dad went through mum's seven years of decline in the last week alone... and she's right.

The Queen's Cousins

Fell down a bit of a rabbit hole last night and find myself needing to put in my tuppence-worth, quelle surprise.

I remember watching The Queen's Secret Cousins (2011) and it annoyed me as misrepresentation at the time. I was reminded of that irritation during the recent coverage of the death of HM Queen Elizabeth II where the tale got wheeled out again.

So last night, set off by a vague reference, I found myself looking to see if there was any further information and I found this rather lovely review from The Guardian (source: https://www.theguardian.com/tv-and-radio/2011/nov/17/tv-review-the-queens-hidden-cousins) which all the quotes in bold are from.

"The voiceover whispered of "dark secrets". Only none were forthcoming in The Queen's Hidden Cousins (Channel 4); unless by secrets you include a story that was all over the tabloids in 1987." 

There's almost a quarter of a century between 1987 and 2011; it's not unreasonable to think that a lot of viewers in 2011 had never seen or heard of the scandal. I was 9 years old in 1987 and disinclined to read tabloids. Nowadays a lot of the tabloid reading adults in the UK weren't even born in '87! Certainly it's been no secret for many, many years but it's still getting trotted out intermittently as a 'shameful scandal' against the Royal Family although none of the people involved are in any way Royal - the late Queen Mother (1900-2002) was Royal by marriage, not by birth, and this is her family.

I would like to take a look at the idea that The Queen Mother was in any way culpable for her nieces treatment. Sure, she was a patron of Mencap (a charity for people with learning disabilities) but at a familial level was it really anything to do with her?

Let's start with the Bowes-Lyon family tree (source: https://www.youtube.com/watch?v=ngRK08NpoNo): Elizabeth Bowes-Lyon, later The Queen Mother, was the ninth of ten children; from them she had 23 nieces and nephews. The eldest of that generation was only 10 years her junior.

The cousins in question were Nerissa Bowes-Lyon (1919-1986) and her sister Katherine (1926-2014), the children of her brother John (1886-1930). Not only was this brother fourteen years her senior but there were four other siblings between John and Elizabeth. 

Obviously all families have different dynamics but from everything I've seen over the years siblings usually have closer relationships to same sex siblings who are also close in age. It's not particularly remarkable that Elizabeth may not have been especially close to John. Siblings don't always stay in close contact anyway. 

My mother has a brother and sister - she had a fairly good relationship with her sister but no contact with her brother for years now. My father has three brothers - all close in age - and he has nothing to do with any of them.

There were certainly a large number of other family members who could have but did not interest themselves in Nerissa and Katherine but no one's mentioning them, I assume because they're not Royalty.

"Maybe the Royal Family's apathy towards Katherine and Nerissa was catching"

If anything it would have been the other way about - if the Bowes-Lyon clan had interested themselves more maybe the Royals would have also. Families can be estranged for any number of reasons and <<<UNPOPULAR OPINION>>> perhaps it's more toxic to expect people to be close just because they're related.

Aside: So much has been made of the Duchess of Sussex cutting her attention seeking toxic father Thomas Markle out of her life but people (and MSM) choose to ignore that Thomas has never met Ashleigh and Chris Hale, his grandchildren by Meghan's half-sister Samantha (Ashleigh is approximately 37 while Chris is about 35) and estranged from her other daughter, Noelle Rasmussen. But the narrative is all poor Thomas, cut out of Archie & Lilibet's life. I'm certainly not disputing the poor Nerissa, poor Katherine narrative but they had Bowes-Lyon and Trefusis relatives before the House of Windsor and there might well have been other factors at play. Just using this as an example that interpersonal relationships are frequently complicated and the media doesn't always present a balanced perspective.

This is WITHOUT factoring in that the Queen Mother was a wife with young children herself (the late Queen Elizabeth II and her cousin Katherine were the same age), her husband's family and her Royal duties. To my way of thinking the idea she should have known Nerissa and Katherine's fates is a bit of a stretch, especially as families often tried to hide how disabled their children were.

The Royal Family proper (i.e. the lines directly related to the monarchy) are not insubstantial in themselves. The Queen Mother had in-laws, and the late Queen Elizabeth II had another seven cousins on her father's side (source: https://www.youtube.com/watch?v=b6F5JC9Ut3I). There are also more distant cousins such as those via Edward VII or Queen Victoria who may well have taken precedence over their Bowes-Lyon relations with the young Princesses Elizabeth and Margaret Rose.

All things considered I don't find it at all remarkable that The Queen Mum (allegedly) didn't know what became of two relatives out of so many. She had plenty else going on in her life.

"Surely someone must have noticed that the women had disappeared"

WHY?! Neither Nerissa or Katherine would have lived at all publicly. They would not have gone to school, or have been debutantes, or simply attend family events. Who exactly would have missed two young women who had probably not been seen since early childhood?!

John's widow Fenella (nee Trefusis - this is relevant later) is described as having been 'a leading guest' at the wedding of Princess Elizabeth & Philip Mountbatten in1947 (17 years after John's death; source: https://en.wikipedia.org/wiki/John_Bowes-Lyon) but it does not necessarily follow that the family were close. A lot of people include close relations in their wedding parties... and never speak to them for decades. 

As an aside to my own familial experiences I have far less cousins but even in these days of social media I have little idea where they are, what they're up to, if they've put any kids in institutions... How much do YOU know about YOUR extended family?

"Katherine and Nerissa Bowes-Lyon, then aged 15 and 22 respectively, had been secretly placed at Earlswood mental hospital in 1941 by their parents"

Well, that's blatantly untrue, isn't it?! Their father John had been dead for 11 years, all that time Fenella was raising her four surviving children alone; she never remarried. Also, define 'secretly'? They didn't make it public, it was later reported (quietly) that they had died... but there's a subtle difference between secrecy and privacy. Secrecy makes it sound underhanded, and perhaps it was. But it could just have been a private family matter no one felt like sharing.

"If the family had stayed together for that long, what was the breaking point? It must have been something quite dramatic."

Also nonsense in my humble opinion. Any parent of a severely special needs child (let alone a lone parent, let alone two special needs children, let alone trying to balance the needs of their other kids) can reach breaking point over nothing at all. Eventually an awful lot of carers burn out.

It is also worth noting that in 1941 Nerissa and Katherine's sister Anne, then 24, was recently married and had her first child that year (Lady Elizabeth Shakerley 1941-2020). Is it possible that the sisters were hospitalised so that Fenella could be an active grandmother, or perhaps their disabilities made them a risk to the new baby. Just because someone is mentally disabled it does not follow that they are passive or inactive, physically incapable of doing harm; indeed, some mentally disabled people can be dreadfully violent.

Fenella Hepburn-Stuart-Forbes-Trefusis was 52 in 1941. She was likely getting to old to physically care for them any more. She may well have felt that they would be happier and more settled in an institution. Perhaps she had health issues of her own (as many carers do) and was concerned that her daughters ought to transition to a hospital before her own death.

Second guessing the strains which Fenella was under is vague at best but remember that the 1940s were not only a different age culturally speaking but also technologically - there were no communication devices for the non-verbal, wheelchairs and other aids were primitive at best, even basic care needs like laundry would have been quite burdensome without modern appliances. Certainly Fenella was better placed than most but that does not infer that she had it at all easy.

"None of this would have mattered so much if there had been any attempt to discover why the two women were placed in care in 1941, as this was the one part of the story that was genuinely still a mystery"

They were placed in care because they were non-verbal and estimated to have a 'mental age' of six years - isn't that enough of a reason? I assume the author, John Crace, means what medical condition(s) led to this unhappy situation... But between their medical records being justifiably private and the lack of genetic diagnostics when they were young it's very unlikely a definitive answer could ever be provided.

A different Anne, Anne Tennant, Baroness Glenconner had her engagement (to the future father of Diana, Princess of Wales) broken off after "his father objected to the match on the grounds of "mad blood", as one of her grandmothers was a Trefusis" (Source: https://en.wikipedia.org/wiki/Nerissa_and_Katherine_Bowes-Lyon)

This is no mere paranoia about heredity, but based in fact. I mentioned earlier that Nerissa & Katherine's mother was a Trefusis, I have shown an example of another Trefusis descendant having her engagement called off due to the family's reputation... Fenella had five children - two disabled, two healthy, one who died in infancy. Her only sister's story followed the same pattern: Harriet Hepburn-Stuart-Forbes-Trefusis (1887-1958) married, in 1910, Major Henry Nevile Fane and had seven children (source: http://www.thepeerage.com/p1246.htm#i12451): three disabled, three healthy, one who died in infancy. There was quite plainly something wrong in that family and potential suitors were understandably alarmed.

The three disabled children of Harriet were also, eventually, life patients at Earlswood - Idonea (1912-2002), Rosemary (1914-1972) and Etheldreda (1922-1996) (source: https://www.tatler.com/article/real-story-nerissa-and-katherine-bowes-lyon-the-queens-cousins-the-crown-season-4). It is perfectly possible that Harriet and Fenella having between them five daughters with similar, if not identical disabilities, may have chosen to send the young women to Earlswood together. While apparently cutting off all contact with the five girls it was likely a hard decision; very few parents get up one morning and decide to write their kids off completely. It's also worth noting that popular thought at the time was to make a clean break of it - that it would be distressing for the disabled person to see family members and not be taken home with them, it would likewise be extremely painful for the family members leaving them behind.

It seems improbable that a birth-injury disability such as cerebral palsy would (a) not be recognised as such and (b) affect at least five of twelve cousins (after all, we don't know whether the two who died in infancy would have been similarly affected or not). Much more likely is some genetic illness although what motivation would there have been for seeking a diagnosis at such a late stage when their siblings children, and indeed THEIR children, all appear to have been unaffected. Sure, there's curiosity but realistically only Katherine could have been genetically screened, the others having died before such testing was widely available. Even if she had been screened that does NOT guarantee any answers. 

"If the 85-year old Katherine had made her first ever public appearance on the Buckingham Palace balcony: that would have been abusive"

Obviously this was a scenario that was never going to happen - as a Bowes-Lyon she would not have got a balcony spot in a month of Sundays. But even if it had been an option I agree with Crace; it would have been abusive. While hiding people with disabilities away is, thankfully, largely done away with there is nothing admirable about putting them on display to be gawked at like in old freak shows. Like I said earlier - there's a big difference between secrecy and shame, and privacy and protection.

Maybe their family did them dirty but it was in line with societal norms of the era and judging them by the standards of several generations later is pointless. Also, no one has ever really addressed whether Earlswood was a good, bad, or indifferent place to be. I also think this sort of story is immensely unhelpful to struggling carers who may need to consider residential homes

Perhaps we need to consider empathy before judgement, especially in a historical context where little can ever be certain. 

Two And A Half Years On

Obligatory recap:
When my mum first came here - at the end of June 2018 - after a nine and a half week stay in hospital I very much thought she was coming here to die. In all honesty we hadn't been at all convinced she would even get out of hospital.

Before her stroke my mum, then 73, was getting visibly frailer. She was greyer, more wrinkled, shrinking. The day before I had actually sobbed on my daughter's shoulder that I didn't think we'd have her for much longer. 

That said, she was still living independently, driving considerable distances although she spent more of her time at her partner's house than her own flat for sheer convenience.

Her stroke was described as 'severe'. There's no classification system like stages of cancer that allow you to understand where your loved one is on a broad spectrum that ranges from quick recovery at one end to things such as permanent paralysis, coma and death at the other.

My mum went from moderately healthy and active (type 2 diabetes and advancing age) to completely dependent. And it was a massive shock to us.

Her father had suffered a large stroke when I was a kid. We all agreed his quality of life had been crap yet somehow he lived another 16 or so years. Mum's situation was so much worse it was no wonder we expected her to go imminently.

Anyway, that first year she was home I felt like I was on tenterhooks. Every time she nodded off in front of the TV I'd check she was still breathing. If I woke up before her I'd be terrified she'd died in the night. NOT, I might add, because I am *scared* of her dying so much as it's a new experience I know will be very unpleasant.

I know I've blogged about all this before so I've tried to be concise.

We've recently passed the 2.5 years mark since her stroke and we're also just past the 2 years 4 months since she came to live out her days in the care of her only child - muggins here. And the pressing thing is... how wrong I was back then.

Not only did was she clearly NOT on her last legs, as evidenced by her continued survival, but - and this is the bit I'm especially struggling with - SHE WASN'T ACTUALLY THAT BAD.

Badness is a thing you can only appreciate by contrast. Mid 2018 was BAD. I did not make a bad call in declaring it bad. It was absolutely the most horrific experience... until you experience WORSE.

Worse is decidedly where we are now and I have an uncomfortable awareness that further degrees of badness are both possible and probable.

When my mum first came here she was so catastrophically not the person she had been that it was difficult to see the blessings. With hindsight, and loss, they're clearer. That's where I'm at now - realising how much more of her we've lost, especially since what was probably another big stroke right at the start of lockdown.

Memory - she remembered lots of past things although she had an unfortunate mental block on her partner's name.
Her memory is far worse now. She blanks lots of things, and far more names. She rarely reminisces.

Personality - back then she was still pretty much herself.
Now her principal remaining characteristic is a stubborn streak a mile wide.

Intelligence - my mum's never had an IQ test and her parents made her leave school at 16 but she's a seriously smart lady. There's something kind of hilarious about a stroke survivor who can't remember the name of her partner but can spell obscure words, correct grammar and yell abuse at someone misusing French on TV.
Some of it's still in there but we see less and less of it. She still uses some rather impressive words at times.

Speech - we adjusted to the new sound of her voice quite slowly.
She just passed her 76th birthday (whodathunkit?!) and she had three phone calls - each person said how good her speech was... yeah, it's not like that real world. Her speech is very difficult to understand now, even though I'm with her full-time I struggle. I've started her on drink thickener too which is indicative of deterioration. Gotta try to persuade our not-so-with-it GP to put it on her prescription next.

Mobility - it didn't bother me seeing my mum using a walking frame. I was all in favour for the stability, as was she. The hospital physios had wanted her to try for sticks but my mum has ALWAYS been pro-frame. She first used one in her 50s when she suffered a broken ankle & DVT. Safety was always a higher priority to her than appearances. She would walk to the loo on her own... from the living room. She would get up to the loo on her own in the night.
She can't get up from a chair without assistance now, let alone out of bed. It must be a good year and a half since she went to the loo on her own and forget walking the length of the house! These days she never moves anywhere without at least one person HANDS ON.

She used to come and sit in the living room to watch TV although it drove me nuts that I was expected to watch endless Midsummer Murders repeats when I don't even enjoy watching TV; now she hardly leaves her room... which at least means I can get stuff done from time to time. She sleeps a LOT more.

Old age is not beautiful. It is grim.

Home A Year

Obviously I've blogged about this before and, presumably, will do so again - so I'll put the next bit in blue so if you're familiar with the background story you can just skip ahead.

On Monday 16th April 2018 my mum (then 73) had a severe stroke. To us it was blatantly obvious, to trained medical 'professionals' it was a mystery; while she was in A&E they seemed to think she was there with a stomach bug of all things! A consultant in Acute Care the next day said it definitely wasn't a stroke...5 hours later they confirmed it was - as we recently discovered, the NHS can't even record a stroke as affecting both hemispheres of the brain cos their software just won't accept that as being a thing. The usual FAST symptoms don't apply, or at least not so clearly: no facial drooping, no one-sided weakness - because EVERYTHING is affected. My mum was in hospital for nine-and-a-half weeks; this blog marks one year since I brought her home.

There was never a question that my mum would come here after her stroke, it wasn't a 'decision', it wasn't 'considered', it was just how it was going to be. We got the call at 8pm and I stayed with mum until she was admitted to Acute Care a little after 4am. I walked the four miles home, mooching, catching Pokemon, trying to wrap my head around what we'd been through that night... getting in about half past six. Collapsed into bed and got up at 8am when my dad rang for a status update.

At that point we felt certain it was a stroke, but there was still a chance that the 'experts' knew what they were talking about and that whilst she seemed desperately unwell it might pass with little-to-no long-term consequences. It just never really crossed my mind that a day or two (even a week or two) in hospital and she'd be fine. Instinct said this was it: major life changing event.

HOWEVER, even at that point I was planning for my mum to come stay with me. Even if our hunch came down to nothing more than paranoia whatever the problem was she was bound to be weak and in need of some looking after. I had already started looking around the house thinking how best to tidy / rearrange furniture in order to make things more comfortable for her.

I did not however think about the long term. Partly cos I feared we didn't have one, partly cos my grandad lived to 91 after his big stroke SIXTEEN YEARS EARLIER. If my mum's future runs to those lines I'll be looking after her until I'm what 55?! And then where will I be? No savings, no pension, precious little chance of a job... 
I was relieved she survived the first year past the stroke but as we then closed in on the anniversary of her homecoming (21st June) the weight of the future really started bearing down on me. A couple of weeks ago I hit a really low patch.

Y'all can think I'm selfish - I don't care. I had a miserable childhood; my parents were not nurturing / affectionate / supportive / whatever. I was bullied at school and my parents didn't want to know. I wonder if my grandad's stroke, when I was 6, may have been a significant factor in my parents' disintrest in all things Heggie-related. At 16 they forced me into an abortion. At 17 I was a single mother and still desperate to get as far away from them as I could manage - I laughed at people who said things like "you'll really need your mum now" like that was even a thing. I got as far as Somerset...where they bought a house for me to rent, ensuring I'd never escape their influence. Twenty-odd years later and my youngest has reached adulthood...and I moved back home-adjacent cos I was out of options after decades on welfare and minimum wage jobs while I raised my kids and earned my degree.
I might've had to come home but my kids were grown, I had my BA - SURELY this was my time??? I had hopes and dreams - I wanted a social life, to meet people, to pursue my interests, to travel. And here I am stuck at home again, drudging. I have no income.
I have been single since my kids' dad walked out...in 1998. And I mean SINGLE. No dates, no friends with benefits, NOTHING. Now I'll never meet anyone, let alone anything more. I kinda suspected after all these years alone that'd be how it went but foolishly I'd still hoped.
I'm grieving hard for the life I wanted, the life I'll now never have. 
Cos even as and when my mum's gone I'm still responsible for my dad (who is an almighty asshat) and my 'stepdad' (who is less of an asshat but only came into my life in my late 20s). AND I DON'T WANNA! 
Firstly, cos I have no inclination to 'caring' - being stuck at home with my kids was hell enough. I am agender and all this caring, cleaning, domestic drudgery shit is entirely too much of a feminine cliche for me to want to touch it with a barge pole.
Secondly, because I describe my familial feelings as Stockholm Syndrome-esque. It's about enforced proximity and bonding through trauma.
But mostly because I want to have MY life. Shit childhood, shit adulthood and everything has been about other people; my parents, grandparents, my kids...no one has ever put me first so why the hell shouldn't I? I just need the dratted opportunity!
I did not have a good relationship with either of my parents before this and the current situation has only made it worse cos we can't escape each other. I wish I was the sort of person who could dump annoying elderly relatives at the gates of a care home and walk away without a qualm. It would be so much easier.

I can't tell you how much I just want to ditch everything and GO...not that have anywhere to go, you understand. Or the resources to get there. To be honest though, just being able to leave the house would be something. Mum doesn't want to go out, she doesn't want people here. I am so bored.

This article (https://www.bbc.co.uk/news/newsbeat-48458760) is about new mums struggling with changes to their bodies after childbirth and linking it with more profound loss of identity - "I think it's really important in that transition between young woman to mother that people are actually allowed to grieve the loss of their old identity." Well, that's what I've been doing - grieving for the person I was finally becoming.
My midlife crisis was FABULOUS. So many hair colours, gigs, tattoos, piercings...getting out, meeting people (bless the Lost Hearts!), working on the self-confidence I hadn't lost...I'd never had any!

In the last couple of days I've had a glimmer of hope...The Broken Kings (the band 3/5 of my beloved Fearless Vampire Killers have since become) have announced their 1st ever live performance - supporting former LostAlone front man Steven Battelle. With the help of my younger beastie I AM GOING!!! Also the combined blessings that it's somewhere I can get to and from fairly easily from here (and won't cost the earth to do so), and the fact it's almost 2 weeks before her new semester begins. My adults can look after her (she also agreed to it, I hasten to add) for one evening so I can have a very special break.

So that's where I'm at. Glad my mum's doing okay, but generally fucking miserable because I'm not. 

One Year Later

I just want to start by saying: this is MY blog. MY views, MY life experiences. I am very well aware that the person suffering most these past 12 months has been my mum. I know this because I have been witnessing it from the front row and what she is going through is just about the only thing scarier than what I am currently living.
Given that she watched her dad robbed of everything by stroke for sixteen years before his eventual demise and now she's living the same fate I am definitely up close and personal with the fear that this is my future too.

This past year I have discovered the trickery of time. The first week my mum was in hospital was far longer than the 51 weeks since. The 9.5 weeks she was in hospital were certainly longer than the 9.5 months which have followed.
This past year I have discovered a capacity for being at the brink of a nervous breakdown without actually tipping over the edge that I had never imagined someone of my dubious mental health to be capable of.
This past year I have discovered that ice running through your veins is not metaphorical but an actual physical sensation which is all kinds of unpleasant.
This year I have done things I never thought I'd be capable of and kind of wish I wasn't.
This past year I have discovered that gin solves nothing but fuck anyone who tells me to give it up. Do I give a shit for the state of my liver? No I bloody well do not!
This year I have discovered my ability to self-pity has no limits...

Approaching 40, and being curiously potato-like in visage and physique, I knew my chances of meeting a willing victim finding a life-partner and getting married were slimmer than I'd ever be. But you can't blame a spud for hoping. Following my mum's stroke however one of the hardest things to accept was that not only would I not have the opportunity to meet anyone (given that I barely leave the house) and that I present the least attractive prospect I ever have (living in ratty trackies and being zero income) but also I am now far too damaged to ever secure a mate.

Not to say that being a carer is always damaging or to such an extent but my life has been a series of unfortunate events from conception to the fact I woke up this morning. Nor is it to say that I've had it worse than anyone else - I just haven't got enough normal(ish) life experience to be relatable to someone who isn't as f*ck*d up as I am...and let's not go there. Not even to say that before this I felt sure I was capable of having a healthy relationship - just that I am now certain I could not. There are some things you just don't come back from. I may never have seen people getting blown apart in a war zone or whatever but *gazes off into middle-distance* I have seen things, things that stay with you...
Love is an act of courage. I'm all out. Could I take another risk? Nope. I've had all the hurt I can take and then some. I feel like an anti-gravity game of Jenga; there is literally nothing holding me together anymore.

This past week we've had a major scare - my mum had a fall. No injuries except badly damaged confidence that we feared, for several days, would lead to her never leaving her room again. She was literally terrified to move in case she fell...despite the fact that the only reason she'd been on the floor in the first place was that she'd accidentally rolled off her bed! Fortunately, she is now recovering her both confidence and strength following several days total inactivity.
There have been many times this past year I never expected we'd reach this anniversary; 365 days ago I didn't even expect she'd last the night. I never expected to give up my hopes & dreams, my job, my personal freedoms...but that's what happened. You just have to do what is needed. She never expected to be here either... We got her home from hospital, everyone's had a birthday, Halloween, one more family Christmas, sitting out in the sun or watching snow fall...now we're just waiting on her 1st Easter here and the anniversary of her moving in. After that we move into realms of repetition. Whodathunkit?!

We have no expectations for the year ahead - it will be what it will be.

Footnote
It's not just the situation with my mum leaving me barely hanging on...life continues outside our little bubble.
But sometimes it doesn't. 
A relative has recently gone onto palliative care. Several friends of my mum and stepdad are facing serious health problems; my stepdad spent the first couple of months of 2019 in and out of hospital - he's signed a Power of Attorney document so I can be responsible for him too if need be (HELP!). A former co-worker recently died (50), as well as an internet friend I'd known for around a decade (34). 
I could really use some positive life events...

Struggling

Moving to The Nook in August 2017 was an exciting but daunting prospect. I had moved to Somerset in 1997 in a determined effort to get away from my parents - it backfired; they bought a house down there where I lived for 19.5 years. Moving back to Reading was exciting because it offered me so many more opportunities (especially coinciding with my youngest going off to uni and my own graduation) but it also represented a huge step backwards.

I haven't moved back to square one exactly...I am in the house next door. So much closer to my dad than I would ever choose to be. But approaching 40 and still working part time as a cleaner, and with my parents in their 70s, I acknowledged it was the only logical thing to do.

Perhaps in some regards I have caused my own misery - I planned the move for 2.5 years, I bought new and new-to-me things to put in it, I imagined joining the local Egyptology society, finding a half decent job. Even after I realised my eldest would be moving in after uni I thought we're two adults sharing, I can have my life back.

And that is saying a lot. I went from an unhappy childhood to lone teenage parenthood where I stayed until my kids were full grown ready-to-vote adults. It's not a matter of getting my life BACK so much as finally being able to BEGIN.

How it actually worked out wasn't too bad, to begin with. The elder beastie and I found jobs straight off. Neither job was especially fabulous but Erin got a decent wage while I was gaining vitally important experience - I'd already been told I couldn't get my dream job because I had no experience of cash-handling or customer service. Those boxes were finally getting ticked. Six weeks later I graduated; a month after that it was Erin's turn. Autumn 2017 was all mortarboards and gowns ;)

We had a first Christmas at The Nook - the first time I had had a 'full' family Christmas since I was a nipper. There were only six of us but that was double the usual and it felt so important.

In March I had my 40th birthday. I don't mind being 40 but 41 still feels a step too far, which is unfortunate as it is now approaching particularly rapidly. By this point I was particularly stressed with work - my 4 hours a week sales assistant contract having been totally disregarded I was now often working 40+ hours and running the whole shop several days a week. I don't know how much clearer I could have been that I did not feel trained or prepared for such a level of responsibility...I was actively looking for another job.

Then it all changed.

I've already blogged about my mum's stroke but so newbies don't have to trawl through all my opinionated potato wafflings the basics are:

My mum suffered a severe stroke on 16th April 2018 affecting both hemispheres. She was not treated as such because they failed to diagnose her for 24 hours (apparently the NHS can only recognise strokes if they only affect one hemisphere, despite the fact it was bloody obvious to us laypersons and we said so repeatedly) they just offered support and physio through the worst of the aftermath. She was in hospital for 9.5 weeks.

There was never any question that she would come and live with me after. There just weren't any other options. Her flat was inaccessible to her.
Her partner's health was too poor to be her carer - he's been hospitalised several times already this year - and his house would have required adaptations. My stepdad rings every day to check in but I get so frustrated at hearing about him spending time with his mates or going out to play boules (or whatever it is). Does he think I *want* to hear that?! He has his freedom because I have the responsibility; I likely won't be seeing my friends again. TBH if it was down to him my mum would've had to go into a home cos he just couldn't have done the things I do. 
Even if she and my dad had still been together whilst his health is better he's still mid 70s, and again the house would need adapting. Even he talks about the difference all this makes to his life...he literally visits my mum an hour or two a day. From right next door. Yeah, sure, this has made a HUGE difference to your daily routine! 
I have no siblings. 

My house however needed no alterations although arrangements had to be made for Erin as my mum needed her bedroom. Also, I was her named next of kin and there was an Enduring Power of Attorney set up so I could take care of everything.
I gave notice at work although my coworkers struggled to understand - one coworker had a mother who was still independent after multiple strokes and, as is inevitable, people do see things through the lens of their own experiences. Even my aunt (my mother's sister) thought she would bounce back like her husband had. He had three strokes that March and by the time my mum had hers he was pottering at home again. That would have been fair enough but their father had suffered a severe stroke...I thought she would understand what we were facing.
One of the more difficult moments was when my dad acknowledged that my mum's stroke was much worse than her dad's. He lived 16 years with what seemed a very poor quality of life. They didn't know he'd suffered further strokes until after he died. Meanwhile, we're fairly sure my mum has already had subsequent strokes...

But I am not cut out to be a carer. Being stuck at home with my own kids drove me demented. I HATED IT. And I had every expectation of them growing up and leaving...I know damn well that there's only one way this can go...and when it's over I have my dad and my stepdad (who came into our lives when I was 29), both of whom have signed Power of Attorney documents putting me in charge. I feel crushed under the weight of responsibility I just don't want.
The stress is chronic. I want to run away, to be free, to live MY life at long last. I feel like I can't BREATHE.

Basically, I'm in mourning. For the life I never had. For the life I never will have. 
My kids' dad was nothing to write home about but there's a blog here somewhere if you really want to know. He was TOTALLY out of our lives when I was 20, before our youngest was born. Zero contact, zero child support. I've been on my own ever since. Now I have to accept being alone forever - even if I met someone (which I can't as I'm stuck at home) my mum wouldn't allow it.
The degree I worked my arse off for won't lead to anything. My CV is decades behind my chronological age. I'll never buy a house, or learn to drive or even just pay for a holiday. Anything I ever have will be inherited, I can't achieve anything for myself - not even a pension now.
No relationships, no friends, no career; not even a bog-standard job. None of those life landmark achievement things.

The best my life has ever been was my mid-life crisis (age 33-38 in my case). It was the point my kids were old enough to do their own thing while I could enjoy the little disposable income I had going to rock gigs, fucking up my hair and getting tattoos.
Dealing with the fact that was it, all the life of my own I'm gonna get, is something I just can't wrap my head around.
What's more is that in that time I lost a load of weight and actually whipped my fat butt into a halfway decent shape. Now I can't get out I'm getting fat again. And I'm drinking a helluva lot.

I don't want my mum to go but I know it's gonna happen, sooner rather than later most likely. I know that what she's going through is worse than what I'm going through but...

• when she's gone her sufferings will be over; I will still have responsibility for my dad (EPoA to be activated) and stepdad (LPoA pending). There isn't an end when the end comes.
• My mum's mum died of stroke, albeit at 95; as I mentioned above her dad died 16 years after a severe stroke. From the day it happened I've been feeling a nasty fear that this is also my personal future...and not one that can be avoided by any means. So who gives a fuck about the diet and alcohol?

I feel like I'm being selfish but I *am* doing the best I can by my mum. I just want there to be something for ME as well, y'know?!

9 weeks plus three? four?! I lose count...

Monday 16th April to Thursday 21st June

It's just the early hours of the 21st BUT...my mum is coming home today!!! I am roughly equal parts excited, relieved and terrified.

It's a new chapter of all our lives. It's tremendous that we finally made it to this point. But I am totally aware of how difficult this is likely to be. I just got my life back after raising my kids, I was enjoying my new-found freedoms...and now it's gone. Not gonna lie, that makes me sad. I was going to Bristol to see Ashestoangels on Sunday night and now that's gone. This last year I went to TVAES lectures...now that's out too.

I know it's pretty selfish but I never had much of a life. I went from being a kid to a teen mum and then after a brief midlife crisis I'm gonna be a full-time carer. No career, no relationships. It's difficult.

Day Sixty...I think?

It has been eight and a half weeks since my mum was taken into hospital following a severe stroke affecting both hemispheres of her brain.

My mum is doing okay and a couple of days ago we had a home assessment to see what my mum's needs will be...that went really well as the house was considered very suitable and they think mum can come home ahead of the ballpark "early July" we were previously told. In fact, it might be at the end of next week!

On the downside we're not getting a lot of support. The home physiotherapy service has already notified us there's likely to be a very long wait and, despite my mum only being able to walk very short distances with a frame and me not driving, she hasn't even been deemed in need of a wheelchair! Bloody ridiculous IMHO.

My cancer scare may yet turn out to be nothing (please keep everything crossed for me!) as my smear test came back normal. No idea what on earth it could be but personally I'm hoping for it to be something menopause related. Yes, I'm 'only' 40 but it's been a very real possibility since surgery when I was 29. The colposcopy is booked for the same day my mum's big meeting to arrange her discharge is scheduled. 

So that's the good(ish) news. On the more difficult side we have the fact I left my job almost a week ago. Unscheduled. I had given notice but a change of computer system and being expected to learn all these new procedures for the sake of a handful more shifts got me stressed out of my gourd until I felt I had no choice but to walk out.

It wasn't bad timing either as the next day my mum had a fall in the hospital and has been really shaken and upset ever since. She is TERRIFIED they'll find a reason she can't come home. It has been a great relief to know I can be there every day to support her.

Then there's the thing where my dad, who is my next door neighbour and my mum's ex partner (by about 14 years at this point), got mortally offended that he "wasn't invited*" to the home assessment mentioned before that he's now not talking to me and hasn't been back to visit my mum. Absolutely pathetic! Unfortunately, the home assessment was nothing to do with him, not to mention that my mum didn't want him there and neither did I...also, he didn't help me prepare for it and actually got in my way quite a lot.

Not that he has to help me as an adult or my mum as his ex the sudden change of heart has made things a good bit more difficult. I kind of hope it's just that the stress of the whole situation has got to him and he'll come around but he has a loooong track record of this sh*t so I won't hold my breath.

*Incidentally, he has never invited me over to his house (assuming we can exclude him asking me to check his emails and the like) and that's INCLUDING the 20 years we lived in Somerset. All the times I visited it was me asking if we could come up.

So yeah, that's where we're at. My mum has times when she wishes she hadn't survived but as someone I know went through that just last week - he mother passed just 2 days after a stroke - I am immensely grateful my mum is still with me and with as much of her abilities and personality intact as she has. We could have lost her in more ways than just by death.

Not gonna lie though, this is by far the most stressful experience of my life...I can only imagine how much worse it must be for my mum.

UPDATE
The colposcopy was fine - no idea what was causing the severe, heavy, prolonged, non-menstrual bleeding but it may have been stress related as it turned out one of my daughters was having the exact same thing!