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.
