A pain I've never had before

[Alex_1504]

Hey all,

I haven't really been active on here in many months. That will change now. I'm a student mental health nurse about to qualify and I was the main carer for my mum who had delusional disorder, a form of psychosis. She developed this quite late in life after taking early retirement. Basically she had been mentally unwell for a while but no one really spotted it, and she was good as keeping it somewhat hidden.

Ultimately in March this year, 2016, out of the blue she was diagnosed with small cell lung cancer that had spread to her liver, spinal cord and skull. She lost the ability to walk and control her bladder and bowels and was given 2-3 months to live and that's exactly how it panned out. We lost her on 08/06/2016.

Before we knew anything about her cancer I had already decided to do my 8,000 word dissertation for my mental health nursing degree on a subject inspired by her. I was to write about the importance of mental health nurses engaging with, and supporting carers of people with psychosis. My argument applies to all forms of mental illness, and all forms of vulnerability and disability generally. Professionals and services MUST do better at supporting and working with carers. It's beyond crazy that so many health care professionals don't realise or 'get' this.

Anyway I'm in bits today but will recover. I didn't get my dissertation in on time. I've been struggling since her death. I'm hoping they will grant me a reprieve in terms of the deadline. Failing that I'll submit it later for a lower grade.

I can't believe she's gone. I was there when she took her last breath. I cry every night, but have a feeling things will get better for me.

I aim to try and support others on here also. I will keep an eye on new posts in terms of the "Intro" section and also the bereavement section. Feel free to PM me or reply on here.

Anyone who has lost someone recently. My thoughts are with you x

Alex

[Melly1]

Hi Alex,
I'm sorry to hear of your loss. Take comfort that you did the very best for your mum. It is very early days and grief takes time. Try and focus on happy memories and not the last few months of her life.

I'm sure you will be able to negotiate an extension with uni, once they learn of your circumstances.

Melly1

[sunnydisposition]

So sorry for your loss!

[Juggler]

So sorry to hear of your loss, Alex.
Re the dissertation, you need to email/phone your personal tutor and course/programme leader ASAP to let them know your circumstances (I used to have these roles). These people will direct you to the right paperwork for extenuating circumstances/interrupting your studies while you handle this major event in your life. At this point in the year some may be at conferences or on leave so it might be useful to email several people at once. You need a breathing space and universities have means of giving this while supporting your studies. You will probably need to provide evidence such as a death certificate. The institution will also have counselling services that are able to support you.
Take care
Juggler
x

[jenny lucas]

Dear Alex

Many years ago, in a different 'incarnation' so to speak, I had occasion to do some work for Marie Curie, and I had to talk to hospice nurses. It was the first time I'd entered 'the world of the dying' (it was not to be my last....). But while I was talking to one of the nurses (in floods of tears, I might add - so that she ended up having to comfort me over the phone!) (she was saying how she'd lost one of her patients that morning, a mum, and I just broke down with it!)......she used the term to me 'bereavement virgins'.

Now, that might be a tad 'tasteless' or whatever, so I hope you don't take it that way, but of course what it is getting at is that the vast majority of us who have never experienced 'death' in someone we love, simply have absolutely no idea at all how it's going to feel.

There's another phrase, from a poem (I'm not sure who by), 'After the first death there is no other'.....which means that we are no longer 'bereavement virgins', because from now on in our lives, when someone we love nears death we know, oh we know!, just what we are in for......

So, when you say that the grief that is overcoming you now is a pain you've never had before, this is so absolutely true - grief is a pain like no other, we cannot imagine it or envisage it in anything like the full, pitiless onslaught. While we are still at the 'fearing for their death' stage of losing someone, we already have inklings of it, but the true devastation that it does is like a tornado, a hurricane, lifting us off our feet and absolutely destroying us....

It's the worst emotional pain there is -

I've now lost three people I love - my parents and my husband. The last was the worst for obvious reasons. The death of our parents is 'natural', and should always happen 'that way round' (because the opposite is truly the worst possible.) (not that the grief is not devastating....but it is 'natural' all the same, for them to die before us.) But each time it's devastated me.

People will say to you, and I will too, because it is true....time makes it easier. It doesn't make it 'better' because that would be to imply that we've 'stopped loving the person we've lost'. But it DOES make it easier. This time next year you will NOT be 'as bad as you are now'. The trouble with that truth is that it doesn't help you now - it's a faint 'promise' for the future, but you can't feel that future now. You probably don't even WANT a future ....you just want your mum back.

I don't have to tell you, because you know already, that it might be said that losing your mum 'so quickly' was a 'blessing' for her, because cancer can take a fearful, nightmarish toll, and in a way, a 'quick death' is to be preferred (this is what happened, relatively speaking, to my husband). But that, again, is 'cold comfort' right now.

The blunt truth is that nothing can comfort you - nothing assuages the pain of grief. It is something we just have to bear - and we bear it, in a way you know, for the sake of the person we've loved and lost. I always say 'our tears are our tribute'....with ever tear you demonstrate your love.

It won't be easy, and it won't be quick, but day, by day, by day, by day, the 'acuteness' of the pain will 'ease' to ''chronicness', and that itself will ebb. Sometimes you'll find your self clinging to it - because it's 'proof' of your love, and keeps the lsot person closer in a strange way. You may find you don't want to 'forget' them (our hearts remember.)

In practical terms, I very much hope you are in touch with whoever is in charge of pastoral care with your studies, and get the 'time out' that you obviously need. (To me, it would be incomprehensible for a place that is training you to be a mental nurse, not to appreciate the devastation that bereavement imposes!). If they are unsympathetic, please go to your GP, and get 'signed off' or whatever. Or try the students union as well. Please don't just accept handing in your dissertation for a lower grade...fight for your 'true' grade. You mum, surely, would have wanted you to.

Then, please, 'go easy on yourself' ion the coming months if you can. You'll find, very likely, that you develop days when you seem to be coping well, that you're 'all right' etc, and then suddenly, out of nowhere, something will 'remind' you and you'll plunge over the cliff of grief again.

Please, one thing I'm sure I don't need to tell you, that every instinct is already telling you, but....it is this:

This will make you a better nurse. It cannot but do so. You will know, now, how grief affects people, how it can tear minds to pieces. If there is any 'good' that come out of losing your mum, it is that it will enable you to help others, that much better....that much more sympathetic, with that much more 'common shared emotions' , with that much more 'humanity.' (Just as your experience of your own mum's problems is what will make you a good mental health nurse - you will know what others go through.)

Wishing you as well as possible. The time will come, in years head, when, like all of us who have lost a parent, we remember them with fondness and gladness, with all their difficulties (mine had MH issues as well!), and be so glad that we still do so. Sadness will always 'pang' at us, but it will be bearable, and 'embedded' into us.

Kindest regards, at a dark time of your life - Jenny

[bowlingbun]

Alex, I'm sorry for your loss. In view of your chosen profession, this is an enormous learning experience for you too. Understanding the loss of a loved one, and the after period, will make you far, far better at understanding the feelings of others. It's an experience that you can't sweep under the carpet, or ignore, because it touches your very soul. Your tutors should understand this, if they don't, what business do they have in their job?

[Alex_1504]

You guy's are awesome. I'm speechless. This weekend I'm doing back to back 12.5hrs shifts on placement. I want to reply properly but that will have to be on Monday. I'll post back and also thank you individually.

Bowlingbun - The comment about 'touches your very soul' almost made me cry, in a good way. Your post has given me the confidence to express to Uni how significant it is in terms of what I've gone through. You've empowered me basically. It cannot be swept under the carpet.

Jenny - Agree 1000% with everything you've said. The bereavement virgin saying is perfect. Makes sense. Will reply in more detail Monday. Thanks for taking the time to write all that. Was like therapy for me.

The others, sorry to not name you, I'm shattered, don't feel too good on top of everything. Head cold. Will grab you guy's Monday

Thanks so much, you've helped me more than you know x

Alex

J

[Pet66]

Alex
I'm so sorry for your loss.
I'm going through what's known as ambiguous bereavement as my husband has dementia and am slowly losing him. Reading the replies you have received were very humbling to me.
I do hope you feel better soon re head cold.
Also find you very brave to share your feelings.
Pet 66

[jenny lucas]

Alex - glad we've been able to respond to you in a way that resonates.

Bereavement is something that will affect everyone who loves. Grief is the price we pay for love. There's an (ancient for you!) song by Simon and Garfunkel (of whom you may never have heard of course!), that says 'If I'd never loved I never would have cried'....and that sums it up really.

Grief is one of the most 'bonding' emotions in humanity - because it is the result of the other most bonding emotion in humanity, ie, love.

We live in a culture that not only 'denies' so much of grief - eg, compared with Victorian days, when we wore mourning and 'everyone knew' we were in bereavement - but also can seek to 'play down' grief. I don't think I'm misleading you when I say I recall an article a year or so back in something like New Scientist or Scientific American, which was about the latest version of the DSM (I think that's it - you'll know better than I do - it's the Dictionary form the American Institute of Psychicatry, or whatever they're called, the people who 'decide' what is and what is not a mental illness, etc etc etc), and it was proving very controversial because 'grief and bereavement' had been included as a form of mental illness.....

It defies belief, but the idea was that 'grief' is an 'abnormality'....and it also said that anyone who was still 'grieving' after two weeks was in a stare of mental illnesss.....

Now that is so OBVIOUSLY AND SCREAMINGLY WRONG (to the point of insanity itself!), that you can understand why being 'sad' that someone we love has died (!!!!!!!!!!!) is something that seems to imply 'oh, that's mentally and psychologically unhealthy' (!!!!!!!!!!) is itself incredibly and unbeliaveably 'wrong'.

Now I'm not going to 'preach' (I hope!), but the one 'profession' that does accept, wholeheartedly, the horrendous pain that bereavement causes are 'priests' (or equivalent), because they deal with the ultimate tragedy of the human condition - which is death. So perhaps, if you wanted, you might catch the hospital chaplain, and 'have a word' with them maybe, and see if they can 'resonate' with you - at the very least they should understand what you are going through right now.

People in 'ordinary life' often feel very awkward about death (I've had people avoid me because they didn't want to have to ask about how I was after my husband died!) (I can't blame them in a way), but anyone who has been bereaved knows exactly what you're going through. In a way, the bereaved, or those that have been in the past, are all 'in it together'.

Wishing you strength to get through this bad, bad time - work can help, and 'keep you going', but as I say before, 'go easy on yourself' as well.

Kindest thoughts, Jenny.

[bowlingbun]

Alex, after my husband died, I gave up sitting on committees and getting involved with community things, because for a while, I felt I had nothing to give, my usual bouncy personality had been replaced by a deflated balloon, but the feeling passed in time. For you, this may have implications for work. Just keep plodding on, and this feeling will pass. As you are relatively young, this may be the first time you've realised the need to "Be Kind to Yourself". As you go through life, there will be Life Changing Moments which you may only recognise when looking back. Allow yourself an early night, allow yourself to admit "No I REALLY don't want to do that", to choose an early night rather than socialise with your mates. During the last few years, I've lost six relatives and had all sorts of major health issues. These are the life preserving principles which have helped me through my darkest hours, when "the fan" seems to have been permanently pointed in my direction! I also make sure I see some good in every day, the flowers in bloom I nurtured from cuttings, the strawberries waiting for me to pick them for tea, the woodpecker looking for grubs in my lawn.