How To Handle Others Telling You How To Feel?

Sorry LONG Post! :frowning:

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. :frowning:

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I don’t know any way to handle it. When you (and your mum) needed help they couldnt/didn’t give it and now they try to make themselves feel better trying to tell you that you are grieving incorrectly… I don’t get it…

Since my husband died I become more and more reclusive as people just really are p!ssing me off. I reach out for support over and over and wish I hadn’t bothered when I get a completely unexpected result that makes me feel worse.

However you feel and whatever you’re doing is the right way as only you can know what you need to do and how you feel. Take care x

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Hi It sounds like you are doing what your mum wanted. That is what it is all about in the end.
When my mum passed she had a humanist funeral she asked to meet the humanist. He came although he had not usually met with people b4. But my mum wanted him to know who she was. It was the best funeral peaceful, humorous and respectful everything she wanted.
My point is you know your mum you do whats right for her
Sod the naysayers.

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Thank you for commenting. :slight_smile:

The main friend that caused me to write this post, should be happier with me now. I’ve just spent the last hour in tears.

I was speaking to a close friend, who said he was there for me if I needed to talk - well, I did… but he just told me after chatting to him yesterday too, that I’d bored him with stuff he didn’t need to know, and that he regretted asking me yesterday, how I was. So, as I’m still upset after earlier, I was quiet, which he noticed. But I was so upset by his comment, and at this time, its natural to discuss what’s happening, whether I’m ok or not, and suddenly, I really didn’t feel like being on the phone any longer. … so I made an excuse, and hung up. It really got to me.

I know Grief/the Subject of death is hard, but I hate when people say they are there for you, and then they really aren’t, or can’t cope. … So I know what you mean about becoming more reclusive, as right this minute I’m seriously sick of the people around me, who say they are my friends. :frowning:

Hope you are ok.
XxxxxX

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wow! what a guy this one who said he regretted asking you… maybe one day he will be in a similar situation (highly likely as every person he knows either they will die first or he will) and realise how ridiculous it was to offer and then say that… I think a lot of those offers are hollow though as whenever I’ve been face to face with someone I can tell they are not listening.

One of my friends said to me why do i find a counsellor helpful, is it because talking helps she asked… i said no because I can talk to a potato (preferable than most people too and if it annoys me i can roast the hell out of it) but what matters is the listening I told her.
I can tell no one really listens to me except the counsellor because of the things they say show they were not listening.

It is very frustrating that we never needed these people as badly as we need them now and now is when they find it too difficult to just listen and absorb what we are saying… i don’t know the answer and maybe I am a bit over-entitled feeling but I feel like I keep giving people chances (out of desperation and disbelief really) and all I get is more evidence that no one much cares.

Maybe next time ring the samaritans (phone 116 123) or text shout to 85258 and they text/call back i believe or see if there is a local bereavement chat line you can type to or write in here. I’m not sure if it’s more or less frustrating but just an idea the lovely staff here have suggested to me a few times.

Today I am doing OK because I had a man come over about the gutters and I pretended my husband WFH on a conference call was inside to him, this was because it is the first time I dealt with a tradesperson and i was very nervous on my own for a variety of reasons.
It turned out well though as this meant i could talk about my husband in present tense for half an hour as the gutter guy asked some things about who had done this and that and he was complimenting something my husband had built which cheered me up no end and gutter man was none the wiser. That half hour was much better than anytime in recent months talking to the “friends” I thought i had. So if all else fails i recommend asking people to come and quote!!!

How did your day go?

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Dear ImJinney,
It’s hard to know how to describe someone who offers a listening ear in your hour of need and then claims to be bored when you do just that. A friend he definitely is not.
I think many of us on this forum have felt let down by so called friends who really cannot handle our grief sensitively but admitting to being bored is plain unkind. As Fleur says, one day he may need to talk and no one will be listening. X

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Hi Twillwemeetagain

I think that was lovely that your Mum wanted to meet the humanist. I arranged a humanist funeral for my Mum on 22nd December. We had never talked about her wishes so I didn’t know anything about what she wanted but I knew I wanted it to be all about her by people who loved her so we had a humanist who was amazing, he made it warm and funny - just as my Mum was - and I spoke at length and so did my Uncle. People laughed and smiled at the funny stories we told and I think my Mum would have thoroughly approved. I also asked people to wear something in pink or blue which were my Mum’s colours. I didn’t care what people thought, I just wanted it to be exactly what my Mum would have liked and for it to be all about her.

So @ImJinny, you should do exactly what you think your Mum would have wanted because it is all about her, not anyone else.

Nicky

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Hi Njl
Your mums funeral sounds very similar to mine.
We also had laughter and no one wore black as she requested these things as well.
When I say it was a lovely funeral it really was because it was a celebration of her life.
It sounds like you gave your mum a beautiful day.

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My Mum’s funeral was lovely too - sounds weird but it was. It was heartfelt and all about her and she would have loved to see that people were laughing and remembering her with fun and love xxx

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Hello @ImJinny how are you doing today on the scale of sh!tness that is now our lives?

Are your brother and dad still asking what they can do to help? (if so maybe you can tell them to phone up about the wheelchair and say it’s stolen from outside so you can keep it). Or maybe they could make food (or go to the chippy if its beyond them). Try to use any help offered if it’s possible but I know often that is more hassle…

I think at some point you could apply for counselling here on sue ryder too. It takes weeks to come through and then they email you asking if the appointment time is OK so you can back out if you don’t need/want it somehow later… the first step is just a form to fill in on this website and if you’re up to it I think it could help you a bit just to have someone properly listening. Take care.

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Morning @FleurDeLis,

Thankyou for posting the info on Sue Ryder counselling. I’m going to do that now. The last few days I’ve been so low it’s 3 months now since Graham passed away and I know I’m not accepting it I can’t face collecting his ashes. Valentine’s Day was his 51st birthday I knew it would be tough but my god I’ve been floored been in bed most of the time not wanting to face the world.

Take care x

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@FleurDeLis - Hi - I hope you’re ok. I’ve been so up and down the last couple days - it seems like the waves of grief are in a storm right now, since that woman called to send my Mother’s Wheelchair to landfill. I never expected the level of tactlessness of some people.

Well done you for dealing with the handyman! :smiley: That’s brilliant! :smiley: Even if it was a case that you got to pretend your husband was on a conference call. I don’t blame you for being nervous - but you did it! I don’t know you - but I am proud of you! Hope you are happy and proud of yourself too. :slight_smile:

I wish I understood my Brain more - and whats going on in there. It’s very frustrating for me to be sort of ok one minute - then the slightest thing, knocks me sideways. And if my Dad or Brother lash out verbally - or are critical of me - I fall apart.

Dad started trying to pick a fight the other night - it wasn’t grief driven, he’s just like that - and it left me in tears, wishing it had been me, not mother who died. I wasn’t going to end my own life, but I felt so low, and it was so late (2am) and it just hurt. I hate myself for wishing he’d have been the one who died, not my Mother… but I do. He is a proper man-child, and can be so nasty. He doesn’t drink, smoke or gamble - but he can be spiteful nasty and doesn’t get mental health issues, of which I have a fair few, and so he gets his jollies from taunting me about them. I have told my Brother, that as he is 79 now - I simply can’t be his Carer, like I have been for my Mother. It just wouldn’t work, with the relationship we have.

How are you feeling today? Hope you manage to do something - at least one thing - to make you smile?

xxxxxx

@Juli69 - Hi
I am sorry you had such a very rough day the other day. :frowning: These ‘important’ days are so very hard aren’t they. :frowning:

I’ve made a pact with myself to make each occassion, special for me - of course, I will bawl my eyes out, but I’m going to make the days a gift for me, to try and ease the pain of grief. On Valentine’s I’d usually decorate the house, and Mother’s room. I didn’t out of respect for my Dad, who actually didn’t seem that bothered - but I did hype up the Chinese New Year celebrations instead … we aren’t Chinese, but we always did something for it. We watched the performances online, and ate Chinese Food, and chatted, until I had enough and made an excuse to escape his presence! lol. … but I am going to do that for me… because I need to. My eyes and face are raw from crying (after my best friend died years ago, I developed an intolerance/allergic type reaction, to my own tears, so it gets really painful) . I have decided I want the colours, the decorations, the celebration - because my Mother wouldn’t have wanted it any other way… afterall, she loved doing that kind of thing. I raised a glass of Diet Coke to her, and wished her a Happy Valentines, and Happy Chinese New Year, and I put out a shot glass of Baileys in her room. I think the Cat knocked it over, but the glass was empty the next day. I’m going to keep kidding myself that she stopped in, and drank it. Lol.

You will find a way to manage these occassions better, one day. It won’t be easy, but you will. Things may change for me and I too will be floored on these occassions - but I hope I can replace them with happier memories and happier times, and carry on.

The one date - weirdly - I am dreading, is when the World goes back to ‘normal’ and events take place. Every year my Mother and I would go to the Royal Windsor Horse Show. We’d hire Scooters from Shop Mobility there, as we are both disabled, and we’d go and have a ‘girl’s day out’. She loved the Queen as I do (I used to be an Officer for the Queen, in her stables) and we’d sit and talk and watch, and treat ourselves to food, and so on… we’d cheer the horses on, and when (she was Austrian) the Austrian riders would come into the Arena, she’d proudly wave and clap, and both of us would get emotional when we saw the Queen. We’ve been doing this alone since I was a child - and we looked forward to that Sunday, in May, planned it, and relished it. … and now… I’ve no one to go with… and the last one we went to, I was ill while at the event, and spent most of my time in the Portaloo, leaving my poor Mother sat in her Wheelchair (we couldn’t get Scooters that time, as she wasn’t capable mentally of driving one, so I had to push her), near the catering plot for hours, where she couldn’t even see the horses. By the time we got to the Horses, we’d missed most of the things we wanted to see, she was restless and fed up (her Dementia wasn’t helping) and I was tired with my guts in knots, sitting in sink washed trousers, that I was soooo worried was smelly, from the gut issue that had been triggered by a Bacon Roll, from the Burger Van, that had an Allergen in it, that set me off! LOL. Happy times, eh!!! LOL… but that was the last time we got to have that date. And while I sat by her bedside, in those last few days, when I was alone with her, talking softly, it suddenly hit me, and I sobbed while cuddling her, saying “Who am I going to go with to see The Queen and the Royal Windsor Horse Show, now?”… And I am so upset, because there is no-one of my friends, who would like it, or like the same routine that my Mother and I had for years, so we saw the classes we wanted to see, and didn’t lose our spot. I have a feeling right now, that I will never go there again, because of that, and that it was ‘our’ day … and I am so upset about it… and for once, I am so grateful to CoronaVirus, that for the last 2 years, this decision to go alone or not, (the Nursing Home made my Mother bed-bound by 8 weeks after she was evacuated there from Hospital for Rehab, that never happened due to Lockdown), was removed from me, and was/is completely out of my hands.

Anyway - sorry yesterday was so rough for you… How are you feeling today? Any brighter?

xxxxxx

Thank you for your reply. I had the exact same conversation with a neighbour yesterday ready about it being so much harder when the world returns to normal. At the. Minute there’s an excuse not to leave the house. Still not great but can’t see that changing anytime soon.
Our world is upside down at the minute and the future is not something as can even think of . Sounds like you feel the same. For the last 3 years I was Graham’s carer which became my life. I lost myself and now I’ve lost him. I’m trying to sort some bereavement counselling as I think it may help.

Take care
Julie

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Imjinny,

I’m so glad you managed to say all that. It is your true story confusing though you may find it and it touches the heart. You are also a big hearted woman because you forgave your mother whatever she had done and loved her whole heartedly. And what a wonderful relationship you made together! It must have broken you at the time to be kept away at the end and to have to see her skeletal. I know how when things are really bad one can find humour, and have real belly laughs. Few understand that. That you go up and down and round yourself I am not surprised, there were so many conflicting elements to your life with your mother. And well done for taking over the funeral. We did tht with my darling man, thank goodness and it was all the way he and I wanted it. But it does upset some people.
Take care and don;'t feel you should not repeat parts off all this. It takes a lot to work it all through and it’s best to share. . Your darling Ma was quite a woman! Antoinette

Omg!! I totally get you re friends, or ratwhrf riendds you thought were friends!

I’m so, sorry for your loss! It really is tough!

I’ve actually begun to lie when people ask now, and say yes we’re all fine thanks!! Because it’s been a few months and u guess we should all be over it now then!! It’s exactly how they make me feel!

Struggling with the new messed up emotions of grief is hard enough, doing it lockdown with zero support and unsupporting friends is just such hard work!

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