Apologies for the rather flippant post title but my disclaimer is that I've always used dark humour as a defensive coping mechanism and although it's really not appropriate in my current situation, I can't seem to ditch it.
On 4th January my DP of nearly 11 years collapsed out of the blue with a brain bleed / stroke, and had to have life saving surgery to remove a clot. He was taken from our local hospital to the nearest where this surgery could be performed. Unfortunately he tested positive for Covid (completely asymptomatic) so had to be isolated in the Covid zone of GICU and visiting was verboten. The surgery appeared to be successful and I did manage to speak to him once on the phone during the first week post surgery when he was being considered for rehabilitation - he was paralysed on the left side but could communicate, though really out of it at this point.
After a week his responsiveness declined; a scan at this point revealed no obvious reason - five days later, on my birthday, I got a call to say a further scan had revealed a second bleed deep on the opposite side of the brain and the consultants over that weekend confirmed he was now completely paralysed and unresponsive. On the day of the call about the second bleed, because I cried and begged, I was allowed, with his elderly and frail father to visit, my DP had had one negative test by then but was not due to be de-flagged from Covid status for another 5 days, when he could then be transferred to Neuro ICU.
Discussions were had over that weekend with the consultants over the level of disability he might be prepared to live with. As his mother is in a care home with advanced dementia, we had had many conversations around this situation, so I was confident to say that without a good cognitive outcome and some autonomy, prolonging his life would not be his wishes.
On de-flag day, we were allowed to visit again. In preparation, we had been told that they would take out the breathing tube, as it can sometimes help stimulate a brain response, and allow a better idea of which systems were still functioning. We were also warned it could lead to death. Which could take hours, days or even weeks. I rang in the morning as I had been doing three calls a day and then updating his Dad, his boss (also one of his oldest friends), his best friend on a brother level and another close confidante. It sounds like overkill, but I learned very quickly that things could change for better or worse over a matter of hours. I was told during that morning call that he would be transferred to NICU that morning, and our visit was at 3.00, so when we arrived at the hospital that's where we aimed for. Just before we got to the ward, we were told by phone that the transfer hadn't happened as they had had to deal with an infection in one of his lines, so we turned around and went up to GICU.
We had been promised a face to face with a consultant so were put in the very aptly named but very bleak "Wobble Room" to meet him. Bear in mind his frail Dad is in a wheelchair, his Step-Mum couldn't accompany us because Covid protocol etc. Consultant had to finish a zoom call, so we had to wait alone for 30 minutes. Consultant and nurse came in and quite breezily go through what was happening - apparently it was far too early to think about tube removal, as GICU consultants had heard from NICU consultants that they wanted to give him a fighting chance. We all did obviously, but prognosis seemed so poor according to other consultants it confused us somewhat as to his chances. His Dad crumbled and had to be taken down to the cafe to Step-Mum, I was allowed to stay and follow my DP as he was transferred to NICU.
On the way to NICU, the portable ventilator got knocked off the end of the bed, and he was forcible extubated, and had to be re-intubated in the corridor. Which was harrowing to say the least. But which I was reassured would have had no detrimental effect as it was handled very quickly and efficiently.
When we got to NICU I was put in the family room and told a consultant would come and see me. I waited for two hours. I did see the girl in charge of the intubation, who told me it had never happened to her before, but it was always something they were prepared for so not to worry. The consultant who eventually came to see me was obviously a bit tired as he used completely the wrong name for my DP, apologised when I mentioned it, then went on to rattler through what had happened so far, and that they were going to wait and see.
I was then allowed to visit for an hour, and it was hardly the sitting by one's loved one's side encouraging them out of their coma scenario you see on TV, but I totally get that the reality of these situations is vastly different.
I booked a visit for the day after tomorrow, as I was assured he was relatively stable and should anything change I would be notified. I was at this point wrangling many distressed friends and relatives all desperate for updates.
I should probably mention at this point that my DP had a niche career that meant he had 3000 Facebook friends, across the world as well, he was active in music and live performance and well known in the local alternative community. I had had to put out a post explaining his absence from work and life in general, with blessing of colleagues and family. I gave up trying to update when it became obvious that this was a rollercoaster and there was no point in trying to take that many concerned people with us. It was very difficult to manage my own emotions and the outpourings from other people.
My second visit to NICU was with his best friend and much better, although DP remained completely unresponsive. His Dad had to go home to another part of the country as the toll of all this was putting his health severely at risk. We had initially been told that visiting would be less restricted due to the situation, however when I went to sort out the next visit, I was told it was only three times a week, for an hour, and only the same two people (although there could be discreet flexibility on that) so I decided every other day would be sensible. So I booked a visit for the Sunday.
On the Sunday, before I did my 9.00am "how's he done overnight" call, the hospital beat me to it. Tubes and life support were to be withdrawn on the grounds of comfort and dignity. So I rallied the group of people most involved (my adult kids, close friends, his boss etc etc) as we were told that there would be provision for people to say goodbye.
I was allowed to stay overnight on NICU that first night, then they moved him up to a more general Neuro ward to a private room, which made life easier as the buzzer to the ward was broken and because we were all discreet, calm and polite, everyone did get in to say their goodbyes
I spent his last night by his side, despite everything being withdrawn he hung on until the Tuesday morning. I'd been in there for ten hours, trying every bit of magical thought I could, playing him music, talking to him, praying for any miracle which would change this outcome. A docotr came in and said this could still go on for hours, or even days so I caved and went for a wee and a cigarette with his bosses wife (very lovely and supportive). Last thing I said to him was not to sneak off while I was gone. his boss / friend was with him at this point. In the 15 minutes I was gone, he did indeed sneak off. I'm told this is quite common.
Because no underlying cause could be found for this catastrophic situation, a post-mortme had to be carried out. The coroners told me it would take 7 - 10 days - it was done in 3 or 4. Still inconclusive, so Interim cerificates have been issued. Further tests need to be done so samples have been sent to histopathology - this could take up to 20 weeks apparently. There is an elephant in the room. 7 days before his initial collapse, my DP had his booster jab. Most likely Pfizer on top of his two Astra Zeneca, but they are having difficulty establishing exactly which booster it was, and I can't for the life of me remember nor find his card. Even tentatively mentioning this brought a very confident response from the medics that it's highly unlikely to have anything to do with it. I "have" to remain open-minded and accept it might just be one of those things. I suppose. Although they could find no underlying cause, he was relatively healthy and even his "sociable" lifestyle was not considered significant by the medics when I was honest about it. Obviously this is something that I feel I will have to wait to re-visit if necessary. And I'm very aware it is apparently hugely insignificant. (There's a small tone of sarcasm in that sentence).
Anyway, since DP was released, I have been arranging the funeral. Because of his "social standing" there may be more than 200 people in attendance. The chapel is tiny, seats 50. The logistics are horrendous, and no doubt some of his many many good friends will have their noses put out of joint. There are 14 members of his family, 12 in mine, probably the same again in terms of colleagues, their partners and family. I have people with disabilities to consider. People have to stand outside. I've had to organise tech as the chapel has none but basic facilities for music etc and no Wifi. So I have a "visual" crew and an audio crew - we are providing a speaker outside. It will be streamed so his overseas friends can watch. I have recorded my eulogy and it will be played with a short documentary he did with Uni students a few years ago which gives a real flavour of him in his own words, rounded off by one of the songs he left on a couple of lists. The service is an hour. He wanted 52 minutes of particular music. I have had to edit. His Aunt is a minister so will be officiating. we have woked on all the words together. there will be no time for others to speak. Two of his best friend will be playing a significant song live. there's going to be a horse drawn Victorian hearse.
This is all because it was made quite clear that his standing was such he deserves it, his family and friends deserve it, hell, even I think he deserves it, but my God.......
I have organised two wakes to run concurrently - one for family and closest friends which is in a very close hotel to the cemetery, I have catered for 50 - 70 for that alone, for about 2.5 hours. The other is at a bar in town we frequented which is larger and will take up the slack, and which can run until it gets messy, which it inevitable will. Some will go from the first to the second.
The reason I'm writing all this down is because despite being otld over and over again, how well I'm doing, how proud he would be of me, how much his family and everyone admires me, I feel horrible. I'm not much of a front and centre person, certainly not in this situation where all I want to to is crawl into a hole and die. I feel over the last 48 hours I've hit crisis point, just when it's most unhelpful. I have had alot of help from people, fundraising and on the tech front, people who are also hurting, but my irritation levels are off the map and I spent yesterday having a prolonged panic attack and just sobbing intermittently - although I did manage to make contact with the printers to get the orders of service under way.
DP died on 25th January. we never sorted out any of our life admin to Mumsnet standards. I have to change everything. Bureaucracy is driving me mad. The original Interim certificates came with an address out of date by 20 years that I corrected at both hospitals and the coroners multiple times. New ones had to be issued. This has screwed up the Tell us once thing - the address is wrong online and I had to ask for a new reference number over a week ago. It still hasn't been emailed to me. I haven't managed to chase that yet. I'm not doing this right, am I?
I keep having to remind myself that at least I'm not in Ukraine.
I really think I'm starting to lose my mind.
I lost my Mum just shy of two years ago, and nursed her through her last month at the beginning of first lockdown. I'm just coming to terms with that. If she'd been here.......
I'm so sorry for venting, I just feel trapped in a nightmare, a badly scripted B-movie where if I could get five minutes alone in the room with the director they wouldn't come off well.
How do I keep going?
I know I'm on the home strait to one form of closure, the funeral, but this is going to be an ongoing nightmare for months and months.
And I miss him so much, I feel as though I'm physically breaking. Pretty sure I'll be looking at professional help some time soon.
And while writing this essay, the funeral director has called. he's ready for viewing. Because I didn't get all his clothes there is good time, he can't wear his signature boots, they have to be in with him because the coffin isn't long enough. So I feel utterly shit about that. didn't occur to me that two inches could make all the difference. FML.
So I'm going at 2.00 to see if it's a good idea for anyone else to see him. My son is coming with me (27 so not likely to be completely traumatised.)
Thank you if you read this. if you don't, that's fine. I just needed to get it out I think.
And yes, it could be "outing" but there has already been an article in our local rag, that I helped put together, so meh.
I just want to crawl out of my skin.