If you’re grieving, share something you don’t feel able to say out loud

[Tinywedding]

I’ll go first. I haven’t said these things to anyone as I’m worried they make me a monster.

For context, my dad was diagnosed with a terminal illness (that has a 100% fatality rate whatever stage it’s diagnosed) when I was in my 20s and passed relatively recently.

I really want them to find a cure for his illness so no one ever needs to go through this. But I don’t want them to find a cure too quickly. That would absolutely destroy me if they discovered a miracle cure that he only just missed. Tbh even a recent drug advancement has made me really upset and envious. And then I feel so guilty because I know there are families that desperately need a cure right now.

When it was clear he was dying, I was always hopeful that there would be some miracle that saved him. But caring for him for over a year day and night and his decline took such a toll on me that in the last month of his life I remember thinking ‘oh my god, if he was miraculously cured he does still have to die at some point. Then I’d have to do this again 10-20 years down the line. And I don’t have it in me.’

Maybe no one will respond to this thread but I just had to get these thoughts off my chest. Thank you for reading.

Sorry to all those affected by grief
My dad died 2 weeks ago today
He rented his flat and although I have started to clear it I’m dragging it out as when I go there I feel close to him and once I give the keys back I’ll never step foot in there again
He has savings and tomorrow I have an appointment at his bank to close his account his money will be passed to me as next of kin but I feel uneasy taking it and not worthy of it.
Nothing ever prepares you for losing a parent.

When my beloved mum passed away, I received several insensitive comments, such as assumptions that she wanted to die because she chose to stop treatment, claims that her death shouldn't have been a shock given her illness, and unsolicited opinions on my relationship with her.

A friend of mine asked who I would moan about now that she's gone. I was too taken aback to say anything at the time, but I wish I had, and I still get angry when I think about it.

Why can't people just say, "I'm sorry for your loss"? No one asked for their opinion on things they know nothing about.

Gosh what a thing for your friend to say, that's awful 😔

@rokama that is a horrible thing to say. I hope she meant it as a bad joke in appalling taste rather than anything else.

I do think people don't understand that even when a death is expected, it is still a shock because it is the shock of them actually no longer being there.

People come out with all sorts of shit often well intended. I had someone say to me 'It's been a year' in a 'get over it' and 'pull yourself together' style. I don't feel able to say out loud exactly the nature of my expletive filled thoughts. I know it was well intentioned (it was backed with a worry about me) but it was a f-ing unpleasant and stupid thing to say as for various reasons, I was in a very traumatic situation that was never going to be over and done with grief in a few months.

I'm still bewildered at the phone call I got from my husband's daughter after he died: "Well, I don't know what you think, but I think that when you're gone, you're gone." [ETA This was before the funeral had even taken place.]

She'd actually been a widow herself for 10 years by that point, so perhaps that has affected her.

There are a group of 6 of us that have been friends for decades.

Two friends had a parent who passed awa and it was organised so that we would all attend the funeral.

My dad died 2 came. The rest didnt bother, including the two who had had a massive palaver made about everyone attending their parents funeral with others all in agreement. Afyer the finerals there was so much talk about how amazing we had all bern,hiw great there was such a turn out, it was takrn for granted we would all attend.

2 friends came to my dad's funeral. I cannot get rid of the anger i feel that somehow my parent, my family , aren't as important as others. Really upset me and made me feel stupid, I finally recognised the clique and don't bother with them much now. They are wecome to each other.

Fuck them.

My husband's kids didn't come to his funeral during lockdown. I was told that it was for medical reasons and that the adult grandchild couldn't come in case it affected them.

One of the kids attended the funeral of their partner's sibling a fortnight later and it was made clear that I was expected to watch online - even though I'd never met them.

I was also expected to post a message of condolence on a memorial page - from my husband. In the end I put something bland saying that I was sure that my husband would have got on well with the partner's sibling. (The reasoning on their part was that my husband and the sibling had had the same hobby.)

I found specific parts of the online eulogy very triggering, for want of a better expression. There was a description of CPR being done and I had to do that (unsuccessfully) for my husband.

To this day, I cannot really accept that not one of them could come to my husband's funeral and that they put me through the expectation of watching another funeral a fortnight later - I was told that they'd be phoning me to check what I thought of it. I should have told them 'No.'

I've just read all this back and it seems so bizarre.

People think you’re getting on with life and that you’re doing ok but I feel a different kind of pain now a year on. It hurts my heart to think of all the things she’s missing out on and I can’t imagine how she must’ve felt knowing she’d never see her son grow up. I think the initial shock has worn off and my mind goes to horrible places- how did she really feel, was she scared, how did she carry on knowing she was losing the battle. I wish I could tell her how brave she was and how much I love her. I didn’t want to say all these things because I didn’t want to scare her and we were all in denial. Maybe we did the right thing. Maybe we didn’t, I’ll never know. But when people ask, I just say yeah I’m doing ok. You cannot understand this pain unless you’ve been through it. I find random things triggering. A friend was telling me about her sister having major cosmetic surgery and saying how brave she is and how proud she is of her and I’ll be honest a part of me felt so angry. My sister had to go through such awful things just to try to live and she didn’t get a happy outcome and it’s not fair.

Thank you for this safe space

16 months yesterday since DH passed and today my cancer treatment was in a room I’ve spent hours and hours of time in with DH when he was being treated for cancer. Unfortunately no other room were available, and the staff who had all treated DH suddenly clocked my face and were brilliant but it shook me badly.
I’ve always had my treatment turning right, today I had to turn left into what I’d always thought of DH’s treatment room.

Really struggled to not cry.

@OhchocichocolateI’m so sorry. That’s so hard. I couldn’t read that and not reply. Life is so unfair sometimes and it feels like so many of us have had more than our bloody fair share of it, can’t it be someone else’s turn for once. My dad is in the hospital where my sister was treated and passed away and the doctors asked if he was ok. It broke me when my mum said they don’t mind, they feel close to her there. I hope you are not suffering too badly after your treatment and have some company this weekend

@Ohchocichocolatesending love. That must be so hard. I hope you have someone at home to share this pain. Look after yourself. I hope you turn right on your other treatment days. 💐

Oh I'm so sorry that happened! It must have felt very strange and awful. I do hope you have people with you now who can be of support.

My DH died two months ago from Motor Neurone Disease. I just can't really start to imagine how I would feel if I had to re-enter the hospital room in which we lost him. It was in A & E Resus so obviously it can't be guaranteed that that would never happen, but it would feel awful.

Yes, l get this totally. I look at my DHs family, we both had 3 DC prior to meeting, my DS died in horrible circumstances so l now have only 2 living DC and l want to scream at family events that it's not fair, you still have your 3, why did it have to be one of mine. Not helped by one of DHs DC being a horrible person who l try to avoid and always have. I am such an awful person thinking like this and feel dreadful.

@Teresa90 you are not an awful person. I can understand why you would have those thoughts and feelings. It's natural. Don't punish yourself for "thought crimes".

DH passed away unexpectedly a couple of weeks ago, and his funeral is on Wednesday, with a funeral tea afterwards at a local pub - fully catered, and I have made that known.

In a 12 hour period 2 acquaintances have offered to make me a cake - and yes, I do acknowledge that this is very kind and generous of them - they want to make them for the funeral - which I just find weird.

It's the endless questions about these wretched cakes that is grinding me down - what flavour would I like? What's my favourite flavour? How big a cake would I like? How many people will I be sharing them with?Will I eat them if they are vegan? To whom should the cakes be given when they arrive for the service? (My answer to this last one was 'please don't bring any cake at all to the crematorium - it's wildly inappropriate').

I know I must seem like an incredibly ungrateful person, but it really feels as if these people are doing a performative act, and that's it's about them feeling better rather than offering actual help.

I'm on my own. I don't really have any appetite at all.
My head is so full of grief that I just don't have the capacity to reassure other grown women

All things that I can't voice at all in real life - the only person I want to tell is DH.

I’m so sorry Jaffa. That’s absolutely shit and I agree with you about the bloody cakes. It’s probably too late but pick one of the cake makers and tell them that you are referring all cake queries to them and that you trust them to run interference.

My uncle died a cruel and gruesome death after being put on the Liverpool Pathway. “Oh it’ll be completely peaceful,” the palliative care team said. “Oh he isn’t suffering”, they assured us when we mentioned he seemed to be in pain, he seems extremely distressed, he was begging for water. I begged them to help, to try a different way, to at least provide morphine. They refused in the most condescending way possible.

Two days later, having briefly slipped into unconsciousness, there was a graphic death scene - I won’t describe it as it was too shocking for words and caused utter panic in the palliative care team who were busily not providing water or pain medication to anyone under their “care”.

Secretly I want whoever was responsible for introducing this torture, to be denied medication and water whilst slowly dying a agonising death. I know that makes me a really bad person. But there should be some payback.

It still haunts my nightmares and brings me to tears to remember what my uncle endured.

Ah bless you, so very sorry, ah yes, the performative platitudes. My son died a year ago and people were great (some performative stuff like your cake ladies) in general. Now , a year later, not a soul in sight. I got a couple of 'thinking of you' cards on his birthday (just after he died). Nobody calls, texts, even answers my texts in most cases (or it's weeks later) ,invites
me to visit them or asks me out or asks to visit me. l am really disappointed and hurt, how they all said 'I'm always here' 'call any time', anything at all we can do'. Just makes me so sad and angry on top of my unbearable grief for my son. Why are people so full of crap, even our best family friends, knew him from a child and his lifelong friends. I feel it is disrespectful to him and his memory too as l know he would be horrified at their treatment of me and not looking out for his mum.Oh and meant to add if they mention their cakes again at the wake, face plant them .!!

@MaryTheMagicalThat’s absolutely awful. I’m so sorry your uncle had to endure that — it sounds completely inhumane. You wouldn’t let an animal suffer like that. I can completely understand why you feel the way you do toward the so-called care team after witnessing something so traumatic. What you experienced is a deep trauma too, and I’m genuinely so sorry you had to go through it.

@Jaffapaffahonestly some people just beggar belief don’t they. I would reply ‘thanks for the offer but I can’t really deal with this right now, whatever you think is best.’ You don’t sound ungrateful at all and it’s the ‘little things’ like this that tip you over the edge when you’re grieving. I struggle to believe that anyone is that useless as an adult that they can’t figure it out for themselves so yes I would
come to the same conclusion that it’s performative. Some people just have to make every situation about them, sadly. I hope the funeral goes as well as it can

@MaryTheMagical

“Oh it’ll be completely peaceful,” the palliative care team said. “Oh he isn’t suffering”, they assured us when we mentioned he seemed to be in pain, he seems extremely distressed, he was begging for water

I've seen this. There is a myth pedalled by medical staff to relatives (and my view it is a myth is based on what I've seen with my own eyes) that those who are literally in the end of life stage and dying "don't feel thirst" so they don't give them fluid. (It is right that there is a limit to how much fluid can be given because there comes a point very near the end when it stops being processed and you will get water retention but this is very very near the end.) It is very very distressing seeing someone desperate for fluid and having their lips moistened straining to suck on the the liquid and then nurses fobbing you off with 'they don't feel thirst'. Bullshit. It's just yet another cost saving mechanism to avoid having to provide fluid to a dying person and change a drip.

I am very clear in my own end of life wishes that I want to be given pain relief but also to be kept hydrated. That would be my advice to anyone in this situation with a dying relative, ask for fluid to be maintained until it is actually contra-indicated by retention. I wish I knew this at the time.

I loved my Dad to bits, but him dying meant I was finally able to cut contact with my abusive mother which has been absolutely life changing.

I'm greatful that him dying when he did has meant that I could go no contact in my 30s and not have to wait potentially into my 50s.

I wish my mum had died instead of my dad.

My mother was - against my wishes - deprived of food and sustenance for 6 days when she was admitted with a chest infection. I had Power of Attorney for Mum, but my wishes were ignored until I contacted the Alzheimer's Society and was advised to ask for the hospital Dementia Champion.

I was finally able to have my views heard - with the help of a male cousin who happened to be a 6ft 2 pharmacist. The magic sentence was "Now, no one is suggesting neglect yet..."

My poor mum was desperate for water and for food. It's a miracle that she survived the starvation, but the damage was done. When we finally got her home, the carers were shocked at how emaciated she was and she died 4 months after the first admission. (She'd been transferred to another hospital, and there was an outbreak of norovirus which held up her discharge.)

@WearyAuldWumman to you. That is hard to read so I can't imagine how tough it was to live through. Hugs to you.
I think it's not uncommon though. There is an attitude on geriatric wards especially with people with dementia that they aren't worth treating as they are "obviously" going to die and have no quality of life. This is not true in many cases depending on the stage, form and presentation of dementia. It is possible to have a quality of life depending on the person and the type of dementia and what stage they are at. It is true that a person who has an infection or is delirious will present differently from how they are normally. One time, I had almost to fight for treatment to persuade the consultant that this was not how the patient was normally. Fortunately on that occasion all was fine, they were treated and discharged well. For the frail, I think that hospital admissions often occur a few times before death - sometimes years or months apart - and these kind of battles really add to the stress prior to the final end-of-life admission. It also erodes trust in other/later treating medical professionals and adds a healthy dollop of additional trauma to the inevitable grief when the loved one does die.

Death is horrific whichever way you look at it. A sudden death will have the disadvantage of shock for the relatives without time to prepare but for myself I hope I just have a heart attack in my own bed at night and never have to deal with dying in hospital in the ways I have seen. It's all so sad and some of the additional pain and stress to both relatives and the dying would be avoidable if staff and policies were different and kinder.

Thank you.

I forgot to add that one doctor had prescribed antibiotics for Mum, but had gone on holiday. The 'nil by mouth' notice apparently included the antibiotics too and Mum wasn't getting fluids via an IV.

Jesus. I mean what can you say. I'm so sorry. It is tragic and also tragic that I am not surprised based on my experiences.