Hi All,
This is my first post. I’m 28 and lost my Mum suddenly to alcoholic ketoacidosis on 1st August 2017 (4th anniversary just gone, so feeling the familiar stab of grief again).
I hadn’t seen my Mum for 5 years before she died- as the cause of death would suggest, she had an alcohol addiction. When she drank, she became violent and aggressive- these episodes increased in frequency until her passing (someone told me she ended up drinking 2 bottles of whiskey per day, in the end). I tried to help her, as much as any child/teenager can help a parent with addiction issues, but it was of no use- in the end, I distanced myself because I was terrified of her, when she was drinking. Albeit, when she was sober, she was the most wonderful person- kind, attentive, caring, creative etc. It’s been such a unique journey in trying to grieve for one ‘person’ without being reminded of the ‘other one’ if that makes sense. I tried to find her a few times (ironically, the last time I searched for her, I was actually only 1 main road away). Everything about our relationship and the way she died haunts me- in my head ‘I abandoned her to die alone’. I cannot shake the guilt of that, so I’ve buried it instead.
I was just returning to some semblance of normality (whatever that is), when my Grandma (Mum’s Mum) had a fall in March 2018. She slipped on some black ice and hurt her peroneal nerve. Gradually, she developed drop foot and, after numerous visits to the GP and hospital, we finally (Feb 2019!) ended up in A&E and, two weeks later, the diagnosis of Motor Neurone Disease was confirmed.
I can’t put into words how horrendous it is to care for someone with MND and watch how the disease takes over each aspect of life. I had to keep my job- it was the one thing I kept for myself (I needed to keep a roof over myself and my partner’s heads and I needed the escape back to normality for a few hours every day). The rest of my time was spent with Gran. Eventually, she went to a local care home- they had neither the time nor the knowledge to look after her properly, so I did everything for her (physio on her legs, speech therapy, trying to encourage learning of text-to-speech apps, finding foods she could eat without choking and watching her to ensure she didn’t choke- all of these things the care home were supposed to do). Gran didn’t want me to complain, as she feared repercussions- so I stupidly left it and just kept going after work every day. Some things I saw upon my arrival from work each day have left me with PTSD. Eventually, Gran was permitted to go to a hospice (not something usually done for care home patients, but they made an exception for her). Biggest mistake ever. Nobody understood the disease; mistaking her lack of ability to speak as lacking intelligence and a ‘normal’ choking episode as though she were dying that very minute (I know this sounds weird to anyone who hasn’t experience dysphagia first-hand, but it can be managed with correct posture- they didn’t, so it caused a more severe episode).
They pumped her with too much morphine so she was unable to communicate with us properly (had to de-code her handwriting as best I could until I saw she wanted to go back to the care home- better the devil you know and all that). So, a little over a week later, I packed up all of her things for a second time and we were back in her old room at the care home. They never took her off the morphine, but at least put her on a dose that meant she was herself again. She was finally catheterised after I’d been begging them to do it for months (sitting on the commode caused her immense pain where the original damage to the peroneal nerve had been done). She lasted another couple of weeks before she passed away.
After 18 months of being the only family member to help her, see her almost every day (there were a handful of times where I could not make it, as I’m only human) and be the only person who truly cared about her, I missed her passing by a mere 5 minutes.
I got the call from the care home late (to tell me to come as ‘her breathing has deteriorated’) because my Gran’s idiotic brother had spent 10 minutes thinking my Gran was ‘just sleepy’ instead of alerting the nurses that she was leaning forward (something she had not been able to do by herself for months). I remember racing from my place of work, screaming in the car, ‘please don’t die’ over and over again. But I was too late and she was gone.
I just came here to talk to some like-minded people who have gone through the same kind of bereavement as I have (there’s nobody amongst friends of my own age who’ve been through these experiences, so I’m very ‘trapped in my own head’ a lot). I try and speak to my partner, when I can. but he lost his own Dad suddenly in July of last year- he deals with grief in the complete opposite way to me, unfortunately.
I tried Cruse, when I lost my Mum, and I found the group sessions to be incredibly helpful- the one-to-one sessions brought out new problems so I had to stop.
I have just finished palliative care counselling with an amazing counsellor and I am ‘better’ than I was, but I am acutely aware that I have buried so much that still needs to come out.
Apologies for the massive essay here- I write a lot when I’m having ‘one of the bad days’.
Sending love to you all x
I wasn’t aware of the counselling service so I’ll definitely look in to that- so helpful!