Notes from my 2025 diary - MUM

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 mother.

1 Jan - And so, most implausibly, my mother has made it into another year!

Having suffered a severe, dual hemisphere stroke in April 2018 mum had further illnesses and events that, by the start of our reminiscences here, had left her almost entirely incapacitated.

2 Jan - Mum has been mostly asleep today. No obvious signs of trouble... but that only suggests this is a 'proper' decline rather than an illness.

3 Jan - Mum continueth sleepily.

4 Jan - Described a dream wherein mum got up (despite being fully immobile in reality) and went to a university lecture in a non-wheelchair accessible basement auditorium. I tried to follow her but got waylaid - then couldn't get in.
Honestly, it (the dream) was laden with symbolism - stopping short of hearing her old voice once more.
It was not prophetic (for today at least) but it has been somewhat of a 'rally'. She *should* have been wiped out by the full wash we gave her but after lunch SHE ASKED TO GO FOR A WALK [1]. Such a thing has never happened and for probably the last six months she's only been out of her room under extreme duress! But walk her we did.

6 Jan - Mum asked to go out AGAIN!! [2] I can hardly believe it. Dad and I managed to get her out and in by ourselves just fine. Unfortunately the river path was flooded so we did [...] just up CML along H, across thingummybob, down V and via the footpath.

7 Jan - Had already been up to town shopping when mum wanted a bacon butty (!) so I went back out for the fixings

Mum was helloing something awful tonight. When Erni came in to help her to bed she shouted: HELLLLOOOOO!! To which Erin responded: Buongiorno. Mum went: Hell...OH! and did a wide-eyed toddleresque startle. It was HILARIOUS!

My mum got caught in loops of saying 'hello' over and over. The word now stresses me out.

8 Jan - Mum's pretty 'off' again. Today she's eaten two fried egg sandwiches. No idea what's up.

My mum loved eggs. They did not love her back. Mum was allergic to raw / lightly cooked eggs (no flu or covid vaccines for her!) but at home I could be sure to cook them thoroughly... and any mistakes in that department I would be dealing with. Really unusual for her to want two sandwiches though, nice to see her with an appetite.

10 Jan - Went to not-Athwals because mum wanted egg sandwiches and cherry cakes - obliged on both.

Again, appetite is great but also her putting in requests was quite unusual.

11 Jan - Mum is back to doing fairly rubbish. She's not eating much, didn't drink a whole lot today, unhappy, muchas moaning & groaning & helloing.

14 Jan - Mum was pretty depressed / fearful last night so I camped in on her floor again.
Had a weird in-between sleep where I could *almost* hear her calling 'Heggie' in something akin to her old voice, yet sounding more like distant bells - whilst simultaneously hearing her snore.
Several times in the night the silence was startling.

This is particularly noteworthy looking back, as it was exactly a month before she passed.

Mum opted for ANOTHER walk today [3]. Now she's knackered but insisting on sitting up so I am watching Knives Out at her.

Mum disliked Knives Out. I think it was probably that she couldn't process Marta's accent, but also the plotline is quite complex. It says a lot that she tolerated me watching it.

15 Jan - Mum agreed to go out AGAIN [4] much to dad's horror. Poor old fart. He's really feeling the cold this winter but it's great mum's remembered the outside world exists.

16 Jan - Skipped mum's wash and got her up to Town! Yes, REALLY!! [5]

Mum had a coughing fit after her crumpets (really quite alarming) - she didn't lose her lunch but then she wanted more... and then more again!

This is noteworthy as (a) if mum had a coughing fit she'd usually declare she would never ever again eat / drink whatever happened to be there at the time, (b) where did that appetite come from?!

Went round to not-Athwals for her wishlist of sandwiches, nuts, biscuits AND CIDER!! What even?! It's 13:54 and she's sipping on a tropical Strongbow!

I asked her what she wanted, she asked what they had, I rattled off some random things, and she said 'yes'! Couldn't believe she actually drank the cider when it arrived.

Mum is sad and helloing this afternoon.

19 Jan - Got mum out for a walk [6 - her last with Neville]

20 Jan - Took mum for a loop up to the doctor's surgery. [7 - which is probably more times she left the house than in the ENTIRETY of 2024]

Mum had a weird incident tonight - telling me her baby was wrong.

I am her only child.

27 Jan - Mum was up past 1am watching Miss Marple.

28 Jan - I had to go to not-Athwals cos mum wanted Nutella.

5 Feb - Very off - no weight bearing - no gripping. Almost completely unresponsive. No eye-contact - no sounds, etc, etc. Mum hasn't eaten or drunk anything since midday yesterday. This doesn't worry me - not only is the woman part camel but she's entirely asleep and in no distress.

It's worth noting here that over a previous winter she had a 'rough patch' LASTING THREE MONTHS where she barely ate or drank anything... maybe 500ml a day and a handful of bites of food each week. When she finally perked up again we were in shock. Really changed my perception of what is survivable.

7 Feb - ...she ASKED FOR A DRINK which had me shooketh.

8 Feb - She may have decided to live a bit longer. Drank two pots of water while potted. Mum had a SANDWICH at lunchtime!

9 Feb - Mum continues unwell, uncooperative but sats steady. She hasn't eaten today. It's all pretty grim but I fear L may be right & my mother's an immortal!

This may sound callous but while she may have briefly enjoyed things - be it an episode of Vera or her 80th birthday celebration the previous October - mum's quality of life by this time was exceedingly poor. None of us feared her dying anymore.

10 Feb - No eats, no drinks, no change.

11 Feb - I was in with mum again last night. She kept telling me off for snoring.

Mum helloing something awful this afternoon. Then it got worse because it morphed into "Hallelujah" with an even greater frequency. FREAKY. AS. FUCK.

She was helloing at a rate of roughly every 30-40 seconds; the hallelujahs were every 20. It was JUST like in Doctor WHO - Miss Evangelista: "I can't think, I don't know, I-, I-, I-, ice cream, ice cream" (see https://www.youtube.com/watch?v=gO1rsPxHY48). It went from hello to hel to h- to hal- to hallelujah. That scene is so much harder to watch now.
Mum wasn't religious. She hadn't set foot in a church except for family baptisms, weddings, or funerals in decades.

12 Feb - Mum has continued helloing

Weirdly, my memory cuts off at the hallelujahs...

I didn't note it in my diary but she was particularly unresponsive during her evening wash. When I lifted her Erin noted her eyes were open and said 'Oh, hello!' but got no response. That was the last time her eyes were open.

13 Feb - Reckon mum's comatose. She didn't stir, even when we washed her tonight. Her BPM has hit a high of 102 and a low of 25. Neither of which presented differently. Dad & Neville have been warned. I opened N's Valentine card and read it to mum.

Similarly this didn't worry me; it was what we expected of a normal dying process. So long as we could keep her clean, warm, comfortable there was no cause for alarm.

14 Feb - Turned mum at about 0915 with limited success - and again at 1610 with even less. Breathing has become more erratic. Can't get a BPM/O2% reading. This was written at 1707.

We finished the wash at about 7pm. Erin sat with her for about 10 minutes, I went back in at 1940 (half an hour after she was last seen alive). The erratic breathing had stopped, I couldn't sense any breathing at all. Mum had an undetectable carotid pulse anyway - an idiosyncrasy that's quite awkward at this juncture. The pulse oximeter hadn't produced a reading in hours... I wasn't nearly as sure as I needed to be - we had to call out an ambulance to confirm she was gone.  
She was taken away a little before 1am on the 15th. She was warm for hours and could easily have passed for sleeping throughout.

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.

Stumbled across an email about mum's stroke...saving it here as back-up

Explanatory notes:

• Email written to my younger daughter - I had only just told her about my mum's stroke and the conversation had been (from my end) at a bus stop in Central Reading...far from ideal and I was worried I had missed essential details. I did much the same over following weeks - especially when my aunt would ask if my mum was out of hospital yet...and I was worried I hadn't made it clear how serious the situation was. My aunt thinking she'd only be in hospital a week or two was a cause for concern - was I explaining it that badly?!
• Pogsy is a nickname for my dad. We have no idea why.
• Erni is a nickname for my elder daughter Erin after a preschool misspelling.
• I have taken out a bunch of names as I have mentioned immediate family before but not necessarily others.
• All changes are in [---] and I am not doing any corrections. I want to keep this true to the event.

I'm going to take things back a bit...

Grandma was in town for her dental appt. She spent Thursday & Saturday with my dad. The original idea was for me to go visit her after work Monday but as Erin was home (she's sprained her wrist by the way) we invited Grandma over for Sunday dinner. She arrived about 1130 and stayed six hours. She was fine, alert...although she did look 'tottery' as she walked out to her car but I put it down to being stiff and tired after a long afternoon sat on my sofa, and probably it was.

MONDAY

I worked a half day Monday and came home with a borderline migraine. Crawled into bed at 1530. Erni cooked dinner and I was just going for a shower at 8pm when the phone rang at 8pm. Erin answered it and a moment later, perfectly calmly she said "Mum, emergency". I took the phone. It was [mum's partner - hereafter 'N']. He said that mum had called about 3pm saying she was tired and going to rest. As the evening wore on and he didn't hear back from her he got concerned. I think he said he'd been trying for an hour and when she finally answered he couldn't understand her. Erin ran to dad's while I got dressed. Apparently Pogsy rang her, said curtly "I'm coming over" and minutes later we're in the car hightailing it over to her flat. Grandad driving while alarmed is also alarming. Pogsy wanted to go in first with me poised to call 101 (which as it turns out is the Police non-emergency number; he meant 111).

So Pogsy dashed in, Grandma was on the floor, sitting up but slumped against her armchair. Dad asked straight off if she wanted medical assistance and she replied clearly "Yes" a minute later I realised I was calling the wrong number and basically thought fukkit this is a 999 job. They kept asking questions geared at heart attacks and I realised that what I was describing didn't even sound like any kind of emergency so I said, quite truthfully, "I think she may have had a stroke". Felt awful for saying it where she could hear me but what can you do???

She was conscious or semi-conscious. She could answer some questions like the medical help one clearly enough but other words were slurred, mumbled, incomprehensible or just no response. Erin went outside to usher in the ambulance crew.

They came in and Pogsy stayed with her while she was being assessed and put into one of those chair carriers to get her out. Erin and I went into her bedroom. We couldn't find a bag or holdall so we nabbed her granny trolley (remarkably handy actually) and started packing it, she'd need fresh clothes and wash stuff for discharge if nothing else. I also called N with an update; he told me to ring whenever I knew anything. Pogsy was trying to find mum's meds etc.

I was going with mum in the ambulance, dad and Erin were coming to the hospital later...I forget why but dad wanted to come back to Woodley for some reason that seemed important at the time. Mum was asked if N or I would be her next of kin - eventually it was decided she was indicating me. It seemed to take forever to get to A&E. Mum was clearly in a bad way - groaning over ever bump and being sick. We arrived at A&E & mum was taken straight to a side room because of diarrhoea and sickness. It was bad cos she was begging for water but nil by mouth. She still hadn't been seen / cleaned up when Pogsy & Erni arrived but then she was cleaned & changed into a gown while the three of us went to the waiting area. Thankfully they let her have water then too.

After they left a doctor saw her and she was asked what happened and she was explaining away...making no sense at all. However later she was saying perfectly clearly she'd be there for hours and I should go home. It was just as confusing for me tbh.

We went through the night in much the same fashion - her practically speaking in tongues and complaining about the bright lights or other patients' bleeping monitors. She was moved to another side room in another part of A&E called Majors (as opposed to minors I presume). There was definitely some assumption that the diarrhoea and vomiting were the problem and that the state of mum was her normal condition which was difficult. Her blood pressure was really high as was her blood glucose. Another thing was she had retained urine. The scanned her bladder twice, twice on a bed pan and about half an hour on a commode before they finally catheterised her. We could have done without them 'joking' about burst bladders but I have to say I was almost as relieved as she was! There was talk of a urinary tract infection which would explain that and even the mental confusion and when mum asked "why am I like this?" that's what I told her. Dad was concerned it was related to her ongoing back pain (no idea how it could've been) and I had concerns she'd fallen and hurt herself, maybe her hip, and couldn't explain where. Broken bones can cause embolisms also resulting in mental confusion. Lots of theories, zero answers. They did however also have her on a saline drip, had given her an IV shot of antibiotics AND hooked her up to an insulin pump to get her diabetes back in check. At least once I brought up stroke and was told no, it's not that.

At 2am, probably when she was being catheterised, I nipped out to call N and Erin. But being a complete fuckup of a life my sim card had come loose and it was all I could do to get my contacts up on my phone let alone connect to a service. I called E from the reception desk and asked her to call N.

At about 0430 she was moved to the Acute Medical Unit (AMU) and again put in a side room. I moved her stuff in, established that she was staying put for the time being and left. By that point she was fast asleep. In fact, I think she slept through the entire transfer.

The buses had started running but I walked home from the hospital. It had been quite a traumatic night and I needed the air and time to do some processing.

TUESDAY

I got in and went to bed 0630...and then Pogsy rang at 0830 and that was that! Never been so grateful for a migraine nap in my life.

Don't remember an awful lot of Tuesday to be honest. Dad and I discussed a lot of the ifs buts and maybes of the situation and I started cleaning house (which was already not bad for us) with the idea that whatever happened mum recuperating at mine was the likeliest outcome. At some point Erni picked up Hennessy [our black cat] and saw blood on his hind left paw.

Erin came to the hospital with me in the afternoon. Mum was sleeping when we got there which was fair enough but when the consultant came in they could barely rouse her and things got properly worrying. The consultant was still thinking infection, I raised a number of concerns inc. stroke but again was told no. Mum could squeeze, albeit weakly, with both hands and wiggle both feet. I was told she'd be sent for a CT scan that evening.

Erni and I left, did a bit of shopping and went home again. At about 2030 I got a call from the hospital during which I got a dripfeed of info: them "what do you think happened?" me "Stroke?" them "I think you're right" then confirming that's what the CT scan showed then that it was severe. Then she asked about resuscitating her if she has a crisis: I said no. We've all talked about this for years but the doctor admitted that in my mother's situation she thought it wasn't in her interests. God knows how I held it together.

I went round to dad's just before 9pm and watched it hit him like a freight train. He swears blind I said it was a 'massive stroke' but I definitely said severe. I think he was hearing what he feared.

I was scheduled to run the shop Wednesday and it was really late to pull out so I decided to work it and then to go down to N's Thursday to tell him face-to-face.

Went home and fell apart for a bit.

WEDNESDAY

Couldn't concentrate worth a damn, stressed af and running on not nearly enough sleep.

Erni & Pogsy visited mum...during which time she didn't wake up AT ALL. Plans were changed. I called N and, hiding the situation from him suggested he come to visit for a few days so he could visit with mum properly. I needed to tell him the truth, face-to-face before letting [her brother] and [sister] know. Absolutely shitting it about making all these really hard phone calls.

I was definitely worried about telling you. I spoke to my area manager cos I had to let someone know that I might have to just drop everything at zero notice. It was her idea to contact your uni for advice.

I crashed at 9pm and got up just after Erin came in from work at midnight. I spent the night doing washing up and watching the Supernatural musical episode 😉 Back to bed at 0430.

THURSDAY 

Erni had made a vet appt for Hennessy at 9am - I couldn't be worrying about a sick cat too. We were only taking him out on the lead and he'd spent most of the last 24 hrs sleeping in his carrier. He didn't look right at all. Toe is very definitely injured. Painkillers & antibiotics for now, take him back next week if he's still bad or earlier if he gets worse. On the plus side he's walking without a limp.

N arrived at midday. by arrangement Erni popped out the back and to Pogsy's because I didn't think N needed an audience. I felt so bad for not telling him straight out but he understood why I didn't want him to hear by phone or to drive while distressed. After that Pogsy & Erni came round for lunch. The mock meat I'd bought for sandwiches wasn't vegan but fukkit for once. After that I started on the phone calls including to your uni where they advised me to tell you as I did for all I was worried about it.

I called [cousin T] to break the news to [mum's sister] and she gave me [cousin J's] number and I called him to tell [her brother]...and you know what happened??? T PHONED [mum's sister] and [mum's sister] phoned [her sister in law]! So much for me trying to get everyone told gently and in person! I was especially worried as Saturday is the anniversary of [my cousin] Allister's death.

I saw that you had a presentation so I held off until evening and that would have to be after N and I visited the hospital. Thank goodness really because I was so much happier for seeing her relatively alert. It's also a huge weight off my mind to know that most everyone knows. Actually managed to sleep fairly well last night!

N is staying here and Erni is camping at Pogsy's as you might need to if you decide to visit. We're all just doing whatever we can to help each other. Thank goodness my dad and N get on okay! They're fetching mum's car back here today so it can be kept an eye on. Dad worries about silly stuff like that; I worry about people.

So I think that's about it. Not gonna lie, this is still a deeply worrying situation. Will keep you updated.

It occurs that my grandad must've had his big stroke around the time my mum turned 40; he was in hospital that Christmas. He would have been 75 at the time. My mum's 73 and a half.

On Perspective

Today I got a bit of grief for not understanding a joke.
It goes like this:

So the main thing is that I have never heard this myth that people having olfactory hallucinations during strokes smell burned toast.
It really helps if you've heard the story the joke is dependent on. But I still don't find it 'funny' unless you factor in that burned toast in the ocean is just soggy bread. And that's not exactly hilarious either.

Perspective is a huge thing too and strokes aren't especially funny. Illnesses, diseases, medical conditions in general...problematic. It's one thing to watch a disabled person make jokes about their own condition - people are allowed to poke fun at themselves, it's when people poke fun at others it starts to get difficult.

So, having seen this do the I retweeted it with the following: 

I've seen this one do the rounds several times and it's no good

I have to ask... WHY IS IT (allegedly) FUNNY?

Probably just me being *sensitive*

but I don't find anything about strokes funny.

The @thelifeofsharks twitter account retweeted me with the (partial) comment: 

We’re sorry you don’t understand the joke.

We’re not for everyone.

Wow, 'I'm sorry you don't get the joke' is such a non-explanation for why you're 'joking' about a very serious issue. 
Another tweeter replied: 

i found it funny, and ive had strokes before. it's set up well,

and uses the toast thing effectively to make a joke

that even i can laugh at

Look, I'm happy for you. I don't know what kind of strokes you had or why but I see from your bio that you're pretty young - maybe that has enabled you to make a good recovery or maybe you're just in a really good headspace to accept what happened to you because, again, perspective is a pretty important factor.

This, for example, is MY perspective.
When I was 6 years old my grandad had a stroke*. They didn't have MRIs or whatever in those days and there's no good way of defining different severities of stroke anyway. He lived another 16 years pretty much in one room like a prisoner in his own home. He had a poor quality of life; he died in 2000 aged 91 - of complications from the catheter he'd had to use because of the stroke.
His wife died less than 3 months later, also of stroke, but then she was 95.
Their youngest daughter, my mother, worked her ass of all those years to keep them in their own home - doing all their groceries & laundry, doing the middle-of-the-night call outs when he fell. My dad did all their gardening and DIY.
My mum had her stroke* on 16th April 2018 aged 73. She has been affected far worse than her father was - he could stay in his own home with assistance, meals on wheels, carers in twice a day... My mum has to have someone with her 24/7 which is me (with a little help from my daughters & dad - when they're available).
See, this doesn't just wreck the life of the person it happens to. I had to give up my own life, my hopes & dreams to care her. And if that sounds callous I don't much care - I did not have a happy childhood and I never had a great relationship with either of my parents. I hadn't long graduated, my youngest kid was recently off to uni - I was finally gonna get my life back. Unfortunately, for both of us, I'm an only child and my mum's partner wasn't up to the job. So now I'm stuck at home being a domestic drudge on zero income living my worst nightmare. The things I have seen and done in the past year and a half...
*We're fairly sure both had subsequent strokes (I think they were confirmed at autopsy in my grandfather's case; my mother is terrified of all things medical so we've pretty much nursed her through the 'episodes')

So yeah, I'm glad that the stroke-survivor who responded that they found it funny is in a position to do so. But that's far from true for all. For many people the position is utterly devastating. You won't find my mum laughing about her funny incontinence or the fact she chokes when she eats or drinks or the million other shitty things she has to endure every damn day. I'm not laughing either, I cry myself to sleep most nights wondering what I did to deserve this karma.

Brain damage* is horrific however it happens but somehow I think it must be a little easier to accept if there's a terrible accident or something. The thing with a stroke is that there's not an outside cause, your body can just do it to itself. My mum was watching TV for heaven's sake! If she hadn't has a partner to phone and raise the alarm...well, she'd have ended up like Michael.
Michael lived down the road from us. Back in the spring his neighbour called his ex wife (my godmother) because she was concerned...he'd been dead a considerable time. I hope to God he dropped dead of a heart attack or something but he could've had a stroke and just lain there 'til he died of dehydration. Maybe there was a reason no one cared about him in life but it's a horrible way to imagine someone going.
*Only in the past couple of weeks did I become aware that there's also such a thing as a spinal stroke - so you can end up permanently and completely paralysed for no damn reason.

I'm certainly not gonna say I speak for any stroke survivor when I'm not one myself; I'm not even gonna claim to speak for any other person whose life has been affected by stroke. Maybe I am being an over sensitive snowflake but this is my reality.
For some people a stroke is little more than a TIA - a 24 hour scare. Some have more serious experiences that require a longer recovery time. Some people will never fully recover; some don't even get a partial recovery but remain seriously impaired as long as they live. Some will die. And they're all called stroke, regardless of whether you can live a fairly normal life, go back to work etc...or whether you're left catastrophically disabled. Lumping all stroke-survivors (and their loved-ones) into one category like that is just nuts when it's a ridiculously diverse set of circumstances.

• Dead within 28 days of stroke - 28%
• Dead within one year of stroke - 41%
• Dead within five years of stroke - 60%

Source: https://www.saebo.com/stroke-statistics/

• Around 2% of the UK population is a stroke survivor.
• Stroke is the UK's 4th biggest killer (1 person every 13 minutes) and the leading cause of acquired disability.
• 1 in 8 deaths worldwide is caused by stroke.

Source: https://www.stroke.org.uk/sites/default/files/state_of_the_nation_2017_final_1.pdf

I find the statistics pretty hard reading though:
About half get a brain scan WITHIN AN HOUR of arriving in hospital, almost 9 out of 10 patients have a brain scan within 12 hours. At 18 hours in they were still insisting it couldn't possibly be a stroke and finally agreed to do a scan 'just in case'.
In Scotland 8 out of 10 people are admitted to a stroke unit within 24 hours. We're in England, my mum waited a week for a bed to become available.
And then the shit about therapies and rehabilitation - everything stopped dead as soon as she was discharged. No physio, no speech therapy, nothing.

So yeah, forgive me if I don't find it funny.

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?!

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!

Day 28

I can't cope.

My mum has been in hospital for four weeks now and it seems to be all about complications and apathy. Without going into too much detail she has a medical condition but is on a rehab ward with no doctor; we got a duty doctor called but he arrived at 3am, my mum was asleep so he didn't bother to see her OR organise any follow-up. She's in a lot of pain and distress; they've done NO follow-up testing to see if the treatments are even working and they give her paracetamol only occasionally. On top of that she's at serious risk of dehydration because she just can't / won't drink enough. I'm looking at having to quit work now so I can look after her while she's still in hospital because it's that bad!

The cat's paw thankfully seems to have healed, the plumbing crisis has been fixed (thank you, dad!) but naturally now *I* am having a health scare too.

The bit that finished me off though was my daughter's uni finances application which I hate on principal and always get super stressed out over but this time ended up with the entire family screaming and me getting the blame for everything. My father started banging on "there's no point having a panic attack" ...well thanks for that astute observation you absolute FUCKTARD! Not like it's a matter of choice and you're not bloody helping. Complete bloody moron.

I just want everything to STOP.

Day Nineteen

My mum is starting to make some baby steps toward progress. We guessed at the outset that this was going to be a long hard journey...I don't especially like being right but I feel it's better to plan for the hard stuff than setting yourself up for disappointment expecting it to be easy. I'd rather fear a difficult recuperation and be right (or pleasantly surprised if it's 'not that bad') than anticipate a speedy recovery and be disheartened.

So...she's starting to spend a bit more time awake and alert; she's doing better enunciating and projecting her voice - more than half the trouble understanding her is how quietly she's been talking, especially difficult in a noisy ward with lots of distractions.

Tonight though we had a little bit of a hiccup. Toward the end of our visit my mum asked if her parents were alright...

As I said in an earlier post my grandad, her dad, was left severely incapacitated from a stroke. He died, aged 91, in 2000 from related causes. Her mum died, aged 95, just a matter of weeks later - also, as it turns out, from a stroke.

My mum cared for them from the outset right to the very end so the fact she'd lost track of those memories came as quite a shock. Not only that, but they died a long time ago - back when my kids were really small so the fact she recognises them as being adults (and me as a middle-aged woman) seems a tad incongruous.

At the same time I'm seeing it as progress - she's thinking more about life outside of her hospital bed, of people and things that are important to her...even if she's getting a bit muddled on the details.

She took the 'news' pretty well. Thankfully it didn't seem like she was going to grieve them over again. However, she is starting to get a tad depressed as the realisation of how ill she's been starts to dawn on her. For two and a half weeks she's been in a weird kind of bubble of existing in a hospital bed and just accepting that's how things are but now she's remembering a life outside of that and feeling frustrated she isn't better yet...there's a lot of hard stuff still to come, I think.