I lost my husband 5months ago to lung cancer I feel like you go through loosing them twice because cancer takes so much away from before anything happens .I was with my husband from The age of 16 dealing with this is extremely hard people around you try to understand but they dont really and there is so many stages you go through with grief as well.
Hello, I understand completely. I couldn't cuddle Ken or get a hug for months before he passed. It wasn't his fault, and of course the daily life you used to have changes and shrinks as the illness progresses. The feeling of loss started for me almost upon diagnosis. I almost feel as though I have been widowed for longer than the 2 weeks I have. There is no shock, just the dull ache that sits in your belly and sucks away the colour.
It's been over 6 months since my wife passed some days are just bearable most days are like walking in a nightmare it just sucks the life out of you very hard to come to terms with it
When my husband was ill and dying all our focus was on making his last days as comfortable and safe as we could. Teams of nurses, doctors, family and friends came and went. New nurses with different responsibilities took over from not quite dying to definitely dying. I did all his personal and emotional care and I would not let anyone else take this from me. What I realise from this support group is that there is little time given to the fallout of the one person who loved their partner more than life itself. All the medicine all the drama all the tears all the making other people feel okay strips your soul down to the when will it end. When it ends you rush around with the funeral and then nothing. Nothing and nothing for day after day, week after week, month after month. Perhaps cancer research et al could look to the left behind.
Absolutely, you have described it perfectly. I have often thought it would be interesting and helpful if there was a questionnaire for us all to fill in asking about our feelings about the journey we are on. What we feel could be improved on and asking for suggestions. These could be used to help the medical profession with their care. It could also be used as guidance for others in our situation. We could also say how we feel and what we wish for from friends, family and neighbours before and after the bereavement. I know we are all different but it could be helpful. I have been so angry with people who appear only to call for gossip and never really bothered before. I feel like saying if you want to come in and interrogate me then there is a £10 charge which I will donate to macmillan. Then we would see who genuinely cares. I guess I'm a bit angry, take no notice. I hope that you find your path much love Pam x
I absolutely agree with you. I would only add one more thing. A guidance for workplaces as they have no idea, how to deal with bereaved people.
I had a horrible experience from my own line manager, who said this, when my husband was in hospital
' You wouldn't think, how much money the NHS is wasting just by keeping people in hospital '.
My husband died three weeks later.
I cannot forgive her for saying this. This was the most painful thing to hear from my own line manager. It still terribly hurts
I experienced a similar situation from our McMIllan nurse associated with the local hospice plus the supporting medical nurse who made home visits before Anne was hospitalised. ( Anne unfortunatly never got into the hospice.) Our McMillan nurse couldn't do enough for us on a day to day basis whilst Anne was dying in hospital. All smiles and empathy. Then Anne suddenly passed away and it all went dead. Not a single courtesy phone call from either of them to say they'd heard Anne had passed and so offer condolences. I felt as if all their support had just been part of the job - and so onto the next person. About a month later I got a letter from the hospice offering counselling. Too late for me I'm afraid. That missing phone call would have meant everything.
Love and Light.
At the end of all our journeying will be to find ourselves back where we started knowing the place for the first time. TS ELIOT.
I had the same Macmillan nurses were brilliant my wife went into critical care she passed in there 1 and a half days later I have had nothing from the hospital from that time till now you would think something could be put in place to help the ones left behind not just blank
The most heartless and pragmatic people always end up in senior positions. They have absolutely no idea of people skills which personally I don't think can be taught. They get to those positions because they support the corperate ideology: profit and efficiently.
Remember we used to have a Personel Department who dealt with people - persons? Now it's named Human Resources. How cold and inhuman is that term? People are just a resourse these days like a cog in a machine.
Love and Light
We feel lost, there is no script to follow, we are left without guidance. Many of us have been full time carers and that job is gone, we are left drifting. Our future is in our hands, but we don't know what to do with it. Perhaps we can help each other.
Hi Needing friends,
You have said it so well in your post: Those of us who were fulltime carers, but also those who were not fulltime carers but still always there throughout the long or sometimes not long journey through cancer, are suddenly lost now because that purpose, that task, that meaning in our lives is gone. I used to feel this a lot in the months after Paul died but also now I feel this sort of pointlessness, being-without-purposeness, from time to time. I felt it, for example, when I came back from my Christmas holidays: Here I am at home again, only having to look after myself, noone to care for, noone to help, noone whose life I can try to make better with my love and care... As you say: I am drifting, my future is in my hands, but I have no idea what to do with it. It's a feeling that sometimes causes me a feeling of panick when I go into it too much.
Helping each other is what we do on this forum I think. But it would be lovely to meet up with others on this forum in person sometimes. If only we were living closer to one another.
By the way: I am traveling to the UK tomorrow to do my end-of-life companion course. If any of you live in the Lewes/Brighton area, I would be very happy to meet up for a coffee or glass of wine in the evening.
I also like the idea of meeting up for a coffee. But as you say, if only we were living closer to one another.
Love to everyone xxx
Just want to 100% second your position on employers being more senstitive toward carers / grievers
I work and live abroad and have taken some time (6 weeks/ unpaid) off to support my mum in caring for my dad. My workplace and my boss in particular have been so impatient around my dads terminal illness. Every time I speak to my boss she asks what his doctors are saying, and if we can ask them to be more clear about “how long this will go on” so that she can plan around it. I won’t say what I do, but will say that it’s not exactly a life or death kind of job, and that 6 weeks is a drop in the ocean in the grand scheme of things (I’ve been with this company for 10 years) .
Another employee relations horror story- One of my cousins (30) died while I was working for a high street fashion retailer and I arrived for a shift at 6am the day of his body going into the church, only to be told to come back and do a night shift because some area manager was going to visit the store to following day. When I explained I couldn’t because the ceremony was at 6pm and then the funeral was in the morning they said “can you not just go to the church after the night shift” I refused to go home and sleep for the night shift and was so angry I spent the whole day silently crying on the shop floor (in front of customers!). My mum came to pick me up, and when i explained to her what had happened she told me to walk out and never go back, which I did. It felt good.
But here I am stunned to find myself in the same situation over 10 years later.
I’m sorry that you lost you partner and that your employer has been so horrifically unsympathetic. I wish there was something we could do to change the perception /conversation around this.
Hi Needing Friends,
What you describe is called anticipatory grief and it is something that many of us seem to have experienced, including myself. On the day Paul and I drove home from the hospital where we had heard that his PSA had risen, I was crying and shocked and felt like I was now beginning to lose him. The grief was so bad. And I think the only reason why it didn't hit me much in the months that followed was that I needed to keep going, needed to do so many things, wanted to do everything to keep Paul as well and as comfortable as possible... And when he died, it was absolutely heart-breaking of course but somehow I felt a little bit, the tiniest little bit, more accepting than I think I would have felt if I hadn't gone through this anticipatory grief for months, even though much of it was not felt consciously. So what you have experienced is a very normal phenomenon. I hope you are okay today and sending love.
Your post describes exactly as I felt from the day of diagnosis, I used to wake in a morning and for a nano second I had forgotten the situation ,and then a physical pain like a thump in the chest brought me to reality,the worst feeling in the world .
I too felt like you a little bit more accepting of his death when it did come, still heartbroken and not in the least thinking “it was for the best”.If anyone had said that to me I would have given them a punch, even at my grand age,
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