Sorry LONG Post!
I’m putting this here because I’m not sure where else to put it. Sorry it’s so very long.
My Mother died on Thursday 21st January 2021. Her death was beautiful. I literally cannot find any other way to describe it. She died in my arms, just me and her in the room, of her Nursing Home, and my Father and Brother on video screen. Everyone said how beautiful she looked - and peaceful she looked - and she did. She was exquisite. It’s so hard to quantify any other way to describe it, especially the precise moment she passed.
Of course I’m Heartbroken, but for the most part - I don’t get it - but I’m ok. I mean, it hits me in waves, but when it passes, I’m ok again. People tell me I sound free-er than I have for years. … but I also feel compelled to exaggerate the tears and grief to people, because honestly, I don’t get what’s going on with me. .
The only time I feel outright panic now, is the thought of the Cremation. I hate it. I hate everything about it. Its so final. I mean, I know with a burial, it’s also final - it’s not like she’s coming back - but a Cremation is so utterly final. That sends me into swathes of almost physical pain, and howls of tears, and silent screams (due to abuse I learned how to scream and cry silently, by the age of 5)… but then, just as suddenly as it started, a minute later, it all just stops again, and I’m sitting here thinking “What the actual heck is going on with me!?!”. I’m so confused.
The other side of it, is friends telling me that I shouldn’t be so jovial when talking about her Funeral. I WANT to talk about it. About the funny ideas, and so on, but I’m being shut down. Or told I’m going to regret it all. We have always been death positive in my house. My Mother and I would joke and laugh often, about the end, and Funeral plans, and she’d come up with some really weird things, that would have us in tears of laughter, holding each other upright, etc. That’s just how we were. Some ideas were veto-ed for her Funeral, for both practical reasons, and that some people wouldn’t find it funny, but some we noted, and I’m using them for her Funeral.
Because of a misunderstanding between myself and the wonderful Funeral Director, we/I are now doing the Funeral ourselves… and honestly, it makes me so happy. It’s like, this is the last thing I can do for her, instead of just ticking boxes, and have someone else, who doesn’t know her, arrange it all. She’s my Mother. I hate being chopped out of her life. I’ve not felt so “light” in years… and Funeral people are very helpful and lovely, in my experience.
There is a lot to sort out, and book, but on the whole, I know I can do this… and the only technical hitch is picking Mother up from the Mortuary, bringing her Home, unloading her, and then reloading her later, in a Horse Drawn Hearse… at the Crematorium, we will hire Casual Bearers to take her in. It is not illegal to hire a Van to transport her from Mortuary to Home, and I know she’d be laughing about it all. It amuses me too. I genuinely laugh over mental images, of things that could go wrong, as she would do too.
But … I have friends, almost demanding me, that I take this all seriously. Saying I’m mood swinging from being hyper, to being hysterical (I’m really not!), and telling me how terrible some things I’m talking about are… even if they are things my Mother and I talked and laughed over, for long hours about.
Towards the end of her life, so much was “stolen” off her (hospital lost her teeth, hearing aids, shoes, and coat, which were never able to be replaced. The Nursing Home dressed her in other people’s clothes, changed her hair, cut her hair a little, lost her Glasses, and some of her Clothes too, so there is nothing left of her in the physical sense, … and now I feel like other friends are telling me how to be and feel, and do things. … and this does sound soooo terrible… but … I just want to turn around and say “Stop killing my mood!”. … because it’s usually when I’m feeling strangely content, and happy.
As a sole Carer for my Mother, I - as a person - didn’t exist. I was merely an Extension of her. I gave up me willingly. I sacrificed me, and my life, just for her. … In the past, up until 2015, she was my abuser. I still loved her. Then things changed with a serious health event for her, and everything changed. She knew I was the only one to look after her, and we had some rough moments, but on the whole, we became best friends again. Her Care needs increased, and Lewy Body Dementia arrived, all with it’s complex behaviours, and then her needs were such, that I barely left her room, as she had separation anxiety, and Hallucinations that needed calming. It got so bad, I slept on a sheet on the floor, for 2 hours a night, if I were lucky, and used her (clean, new ones, obviously) Incontinence pants to toilet in, because she couldn’t be left alone, even for 4 minutes to allow that. I eventually had a full physical and mental Carer’s Breakdown on 25th October 2019. It was not her fault. She couldn’t help her Lewy Body Dementia. I called her affectionately, my Recycled Toddler… and we had lots of laughs together, we laughed more in her final 2 years together, than ever before. I knew the diagnosis was a terminal one, and I was determined to create happy memories together.
Soooooo much happened in the space of those last 2 years, and I had no mental health support, or social service support, in spite of desperately screaming for it. And then at the end of February 2020, my vile Neighbours (who are still under Police Investigation for “Intimidation, Harrassment, and Descrimination” and 5 assaults last year on me), caused my 80 year old Mother such injuries, that they put her in Hospital.
She outran Covid through the Wards, and she was evacuated to a Nursing Home for rehab and physio, where we were not allowed physical contact, due to Lockdown. The Nursing Home were in Lockdown to everyone, and did not allow her Therapist or Physio in either. Their Doctor ordered her to bed, due to her being a fall risk, and within a few weeks. She was pretty much bed-bound. It was Heartbreaking - and there was nothing I could do. She deteriorated from there. Unknown to me, The Nursing Home, began removing me as next of kin, and changed my Mother’s details to theirs, and changed the Doctor to theirs too. This is where I lost power to help Mother. Since August I rang their Doctor 3 times a wee, to speak to the Doctor, only to fail. I even camped there 3 times. Only to be unsuccessful.
We - as a family - made the decision… and I was 3 weeks away from bringing her home, and back into my Care, when I got a call saying a Palliative Nurse wanted to speak with me. I was shocked. Two days previously, a passing comment about her not opening her Eyes anymore, had me calling them at 8:30am the following morning. I was told she was just tired. She was allegedly asleep later when we phoned for our daily phone chat. The following morning, at 8:15am, I was called by them, to be basically told by a Palliative Nurse, that she would be dead in days.
Everyday, I was told she was fine and eating and drinking. She wasn’t fine. The Palliative Nurse told me that she hadn’t eaten, or drunk more than 250mls of water a day, for 3 to 4 weeks!!! He said she has “days, not weeks, left” I live 8 minutes drive, door to door. I spoke to them every single day, and not once did they raise any concerns.
We dashed over there, still only allowed a Window visit, to find her a living Skeleton. We last saw her on 24th November for her 80th Birthday, when she weighed 11 stones 8lbs… to 15th January 2021, where she was 5 stone 3lbs. … She died 6 days later, and I camped inside her room day and night for the final 5 days (because I demanded to be let in, or I’d call the Police), and took over her Care at that point, from the Nurses - not that there was much left to do by that point, and frequently the tears fell, while I held her hand and sobbed at how sorry I was, for not getting her Home in time.
I had time to set my peace with her. To apologise, to forgive (forgiving doesn’t excuse what happened), and to realise there was nothing more I could do to save her, because there was no quality of life any more. It hurts but there was nothing could be done.
After she died, I felt strangely calm. I didn’t know why. I’ve cried, but I seriously am, mostly ok. … but being criticised, and told how to feel and be, and I need to consider my Dad and Brother, - sets me off, and I just don’t know how to tell people who also loved my Mother dearly, that humour is ok, and it’s not me being hysterical, or whatever.
They also want to help… but there is literally no jobs for them to do. … and… part of me wants to do it all, because it’s MY Mother - and the way I see it, is where were they, when I REALLY needed help? - even just them sitting by her, talking to her, allowing me respite, which I often requested, when they asked how they could help, which they never did.
Sorry for the long post, but I don’t know what to do. Why can’t they just be happy, that for now… for once in my hellish life… I’m ok… and it will be after the Funeral, that I will likely crash.