The Orphans Club (by sarah)
My mum died in the early hours of May the 1st she hadn't really woken up for days and had mostly been in hospital since January. The last 7 months have been a strange kind of hell where there were no good decisions because all the options were bad. People kept telling me things would get better and I tried to explain that they couldn't because what ever I did there really was only ever going to be one out come. They did not understand.
In this time I lost myself and was just a conduit of care and rage - I don't argue, I am non confrontational and yet I have been arguing with everyone from drs to friends to family to my mother and even myself over what is best and what is to be done. We spent a lot of money getting a room and ensuite put in - a job that had been postponed due to covid - it was for my mum and we moved it downstairs and it was built as quickly as it could be. She spent one night in it - she liked it and I think it was important for her to see it and to see how much effort we had put in.
Stuck in a wilderness of ethics and unknowns it has been unbearable with visiting restrictions that changed on a sometimes hourly bases and days eaten up by sitting on the phone just waiting with the incessant elevator music droning away. Then there were the times the hospital lost her and didn't even know where she was in the hospital and the turning up when we were booked in to be turned away and other times when we were told we could not visit and then had mum on the phone in tears because we weren't there and the nurse saying of course we were allowed to visit...
Then to the arguments about treatment and capacity and what care was actually needed with me in the middle of a three way argument and having to make decisions I am not sure I was qualified to make whilst taking into account the medical information and my mothers wishes plus the added bonus of a respect form which I never saw that apparently contravened what she had always said. In the end all of that was mute as she'd reached the stage she'd always said she didn't want to be kept alive in and also the treatments had all stopped working.
She'd opted not to have invasive treatment about 2 months ago when cancer was found in her ovaries ie no operations - I was supposed to be phoned by the cancer drs and palliative care team but I didn't know this and it didn't happen - this was part of the last and most ridiculous and heart breaking discharge from the hospital. The genetics dr had spoken to me so I knew that the cancer might be hereditary and mum has 5 granddaughters not to mention sisters etc.. and of course me.
Her discharge was not explained and the ambulance crew had to explain it - she was to no longer go back to hospital but there was no respect for and even if there was we had not been given the correct care package to look after her - the care package that we had been waiting and waiting for and the fiasco with equipment and the arguments with hospital Occupational Therapists verses the Complex Care at home OTs and so on. It was a frigging living nightmare and we all paid a heavy price for it including the kids.
They wanted to take her straight back in but she was understandably desperate not to go so I said I couldn't send her back but the next day she was so ill she was asking to go back in - there is a lot more why she needed to go back in but I don't yet have the strength to share. She told me I had to tell what it was like and that I had to tell the hospital off, district nurses, carers, OT, stroke nurse and one lot of ambulance all agree that I do indeed need to tell the hospital off about this and indeed I have been telling them off in various ways and places through out this whole saga and that makes me feel awful as well.
Mum was grabbing at feathers we could not see as infection raged in her system causing an on and off delirium, she was asking for my great aunt and calling out for her mum. This was the state she'd been in in January so I still had some hope she'd be coming home again and I told her we'd make flower crowns for the Jubilee - mum would tell just about anyone who would listen that she'd been a flower girl for the Queens coronation when she was little and that later she had even been to a garden party or three and met the queen.
Feathers were so important to mum with a belief that they belonged either to the wings of loved ones or their guardian angles and when those normally white feathers float down our loved ones are near. We have pigeons nesting in our chimney and often feathers would drift into the living room - before the hospital Mum would always state that it was actually my dad or her mum checking in on us.
She asked for prays or a candle lit or song sung for her from those who are religious or spiritual - she believed it was all people finding God in their own way. She asked for healing - not for a miracle cure but to ease the passing. We have her favourite foods we rushed out and bought when they said she was being discharged and we have presents that she never got to see. Yesterday the kids automatically tried to get her a present to take to the hospital - they mostly got lost in ward moves and sometimes there were colouring books we hadn't bought which she asked us to give to the kids.
My friend phoned me up to welcome me to the orphans club - between us we've lost a parent every year in basically the first quarter for the past 4 yrs, plus the death toll of friends and so has been high. They joked that we needed to rescind our memberships and really if only that could be so. I am not going to pretend that death is this magical instance of nature that we need to roll with because it is crap and there is a hell of a lot of preventable death - but equally the way our society hides it away as a thing to not be spoken about, to be hidden to be mourned in the private - that is also alien to me and feels so very wrong. Dad would have wondered what impact this sort of thing would have on life extension tech and upload stuff, mum would have rolled her eyes at him.
With the jubilee around the corner I find at the time I resent the Queens longevity - not because she has it but because I am sure a large chunk of it comes from having health care quickly for the minor things so they never get to be the big things and also the getting of treatments and to be honest just good nutrition that people like my mum were not afforded in their youth. It isn't the everything but I am pretty damn sure it has a huge impact. Mum loved the Queen and Royal weddings her favourite actually being Megan's - we watched it together and there were flags and things in Gloucester.
Its weird for me because since dad died everything has centred on mum and her care so I am a little lost at the moment - what am I supposed to do - at the moment there are still phone calls and paper works but nothing like what it has been. But what do I do now? Who do I fight for or with? Everyone keeps telling me to focus on me and getting well - I became quiet poorly due to covid and trying to look after mum - I was already sick - I'd never recovered from the miscarriages and that plus dad going and covid and other auto immune things meant I got Graves Disease along with bought of anaemia and the worst pain and fatigue I've had in years. Chest pains, problems breathing and the sinking realisation that the help I needed to look after mum just was not there.
She had a stroke in October and they sent her home without the equipment in place including a downstairs bed our OT was saying don't let them discharge her but the hospital did not listen and it was horrendous and resulted in mums foot being injured as she predictably fell off of the make shift bed. The fight for equipment and the keep dropping off of the system was soul destroying and everyone says everything is everyone else problem - you literally get sent round in phone call circles bounced between equipment, district nurses, GP, ambulance, social services etc... round and round we go with computer outages and equipment stuck on ships in transit and waits for ambulances which beggered belief - 17 hrs I think was our longest for a high priority call. Some people where waiting 70+ hrs and though this is being reported in the news - the wait times mentioned are nothing compared to what we actually experienced - including for the stroke - the obvious stroke.
This has been a perfect storm of everything being wrong - including us as I tried to look after mum my hands and mobility got worse and worse she ended up with bed sores and infections and I missed how ill she was because I thought she was grumpy about me watching Marvel for my birthday instead of what she wanted to watch. She drove us made with Death in Paradise and I thought I'd never get the opening theme out of my head - but I had hoped that this year it would be playing on her TV in her new room and its absence hurts because we tried so hard but it was beyond us and I can't even really pin point why.
But not just that it affected the kids and we ended up in meetings with both schools as me and Alaric who's firm had given him a lot of compassionate leave to help me, were consumed with trying to care for mum post stroke - they said she was pretty much independent and were even saying she didn't need the help we'd been promised in September pre stroke but she needed help with everything - initially she couldn't sit herself up or feed herself - they said this was our fault for taking so long to pick her up from the hospital (but that is another story and involves promised hospital transport they then said they would never have promised and security guards having to help us get mum in the care).
The schools were fab, especially as both kids own health has taken a bit of a battering with autoimmune system problems being switched on and their own adjustments to that - but we were being bad parents with Jean ending up basically looking after Mary whilst we tried to sort my mum out. And that was before it got really bad - I ended up with social services offering me a care package as I got so poorly I could no longer dress myself but I kept pointing out what we needed was care for mum - why was it being so hard to get?
They dropped her off the list twice and I had to argue for reassessments - it went from 2 careers 4 times a day to 1 carer twice a day to none then back up to twice a day, to me agree to 1 once a day just to get her out of the hospital. When they finally did the assessment having been told 1 carer twice a day it was ruled completely inadequate and a failed discharge for so so many reasons like the fact we did not have the right equipment to look after her.
It is all heart breaking and she spent basically months in hospital crying to come home and then it was a complete disaster - and of course the people I would have moaned about all this too, would have been my mum and dad - but they either were no longer there or it was for them and I know I had them for far longer than some of my friend had their parents for and my granddad died when my dad was a teenager and I know it is nothing like that but still all I can think at the moment is - Damn The Orphans Club.
Events and Outings, Relatives, The Family | sarah | 
Mon 9th May 2022 9:42 am
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