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A difficult subject-End of life

Posted: Sun Nov 25, 2012 3:49 pm
by ladybird
I have just read Barrowgirl's thread telling us her mum had passed away and There was some brief discussion about "end of life signs".

I know this is an extremely delicate subject for so many of us but it is also something that so many of us have to face. I was wondering if there should be a small area of the forum, perhaps "stickied" here that we could discuss this?

At the forefront of my mind is the knowledge that some of us have lost our loved ones with no warning or those who have had painful experiences and I worry that this topic could be upsetting for them, I would absolutely hate to go blundering in with them thinking they are forgotten..they never would be.

It is just that for those who are facing end of life caring, whether hands on or at a distance, I think we really do need to be prepared..IF it is possible. We all have so many differing circumstances and so much combined experience, who better to prepare others than someone who has been thorough it themselves, who has the emotional involvement that only a carer can truly understand?

It is just a thought..I would very much like to see how others feel about this.

Re: A difficult subject

Posted: Sun Nov 25, 2012 4:08 pm
by Minnie
Hi Sis,
I agree with you, I read Barrow girls last post in the thread, but found it very
close to the bone, I could not bring myself to answer it. I felt guilty about it,
but it brought back to many painful memories, which my mind is still finding
very hard to deal with, but I think your right if it helps
somebody talk about the last moments, we should listen and try our best to help,
even with a virtual hug.
Minnie

Re: A difficult subject

Posted: Sun Nov 25, 2012 4:18 pm
by crocus
I posted on that thread after much thought, but was aware that it might upset someone. I am very happy to delete it if that would be best.

Re: A difficult subject

Posted: Sun Nov 25, 2012 4:45 pm
by ladybird
Crocus, I have the opposite viewpoint which is why I started this thread, it is a subject that many of us have experience of and could use that experience to help others. I see nothing wrong whatsoever with what you have written as it was in keeping with Barrowgirls thread. Image

Re: A difficult subject

Posted: Sun Nov 25, 2012 5:25 pm
by Minnie
Crocus,
I think it was good you could talk to barrowgirl in her thread, if I could talk
about the very end I would, right now I cant. but I agree with sis, it would be
an important thread for people . to help them. on the other side of the coin
when I cared I never wanted or had the courage to face the death of your loved
ones, no one really wants to. , you do not want to face change or even
contemplate them going.
Minnie

Re: A difficult subject

Posted: Sun Nov 25, 2012 5:35 pm
by Juggler
I think that sharing the experience will provide insight and comfort to those who haven't been there.
Mum died of cancer. I asked the Marie Curie nurse to call me when Mum was close to death (she was staying overnight and I asked this at midnight). I heard her call me just after 2am and she apologised that she was a few moments too late. I was quite confused that Mum seemed to breath out until the nurse explained it was the air leaving her lungs - something I'd never thought of.
I was very grateful that, before we went to bed, the nurse had told me what was going to happen and that afterwards she invited me to help her lay out Mum's body. It was a very special thing to be able to do for my Mum.

Re: A difficult subject

Posted: Sun Nov 25, 2012 6:44 pm
by Nilla
I will bring this to managements attention as I think its a good idea

Re: A difficult subject

Posted: Mon Nov 26, 2012 6:05 am
by madeliaette
Agreed - good topic. Before Dad's dementia diagnosis - anything could hve been the cause at any time.... I often went to bed wondering if he would be alive the next morning if he wheezed a lot or got extra angry/depressed, or... things he got over though he told me he wouldnt. Now I have been reading about dementia, it seems that this causes many of his problems - such as leg weakness, depression, anxiety, confusion.... Susie sent a link that has been very helpful on the 7 stages of dementia - and I can see that Dad is not yet on the last stage - but when he gets there, recognising those final signs of that final stage is going to be useful.

Another thing that might be helpful - is a to-do list for post death. I sdont know if anyone else feels that would help or not>? I mean - say one morning opne of us goes down and finds our caree has passed away - what exactly do we do.....
I assume we call an ambulance to 'make sure' - but i always see police at the houses of people who have died - are we supposed to call them instead/as well? In the past one needed a drs certififcate to say someon was dead - do the ambulance do tha>?

If we could discuss this sort of thing - it might help those of us caring for the elderly to know what to do when the time comes... if you dont think it too morbid or distasteful a subject.... Maybe others have experienced deaths - but I was in Australia when my mom and aunt passed - and too young when my grandparents passed... so I dont really know what one does...

Re: A difficult subject

Posted: Mon Nov 26, 2012 8:53 pm
by ladybird
Madeliaette, as you have mentioned post death, I will post my experience here.

My mum was 91, in end stage heart failure and was receiving hospice care at home (pfft-a careworker but now is not the place for that), we had been told that she had very little time left. I live at the other side of London with no car so to get there takes me about 2 hours.

I knew mum was going to die and on the day she did, was looking online for the number of the funeral directors she wanted us to use. I received a call from the careworker who informed me that mum had just passed away, she also told me she would be calling mum's GP to pronounce life extinct (to say mum had officially died).
When I arrived, 2 careworkers were there at the opposite end of the flat from where mum was. I spoke to them for a few minutes then went to see mum. In retrospect, this should never have happened, they should have checked with me to see if I needed one of them to come to the room with me rather than go alone.
I have seen death before and it does not scare me but this was my mum. I managed but with great trepidation..all was as I expected it to be. Careworker asked me to sign timesheet which I did, they then left.

At this point I should add that I knew the next people to call were the undertaker, as doctor had been. I'm not absolutely sure but think that an ambulance is not necessary if the person had been receiving end of life care and was under the care of medical personnel- mum had district nurses going in three times per day.

I looked for the certificate of life extinct from the GP but it wasn't there. I knew that the undertaker cannot take a body without certification and hunted everywhere, there was no certificate and by this time GP surgery was closed.
I thought I should call the district nurse team..and then discovered their notes were missing too. I looked for a contact number for the careworkers but they had taken their file so I had nothing, no proof of anything.

I called the undertakers understandably distressed, he told me that he would have to call the police to check that the info I had provided was correct.

To cut this short, in the end 2 police officers came to the flat, they were furious that I had been placed in that situation of them having to check there were no suspicious circumstances to mum's death. As I had provided the name of the hospice service that the careworker came from they had called them to verify and had spoken to "the singularly most unhelpful individual I have had the displeasure to talk to"..as the sergeant put it. The police were great, treated me with the utmost compassion and understanding and gave the go ahead for the funeral directors to take mums body.

The community matron from the district nursing team came to the flat next morining as she had heard what had happened, she was very disturbed too. She even came with me to the funeral directors that day so I wouldn't be alone.
Turns out that it was the careworker from the hospice who had removed the nursing notes, the GP had not prepared the certification as she planned to do it the following day-said that the nursing notes should have been enough. Was very apologetic when she realised what had happened and what I had gone through needlessly.

The point of all this is to say we can prepare as much as possible but things can still go wrong. We do need to know who to call, what certification we need for a body to be removed from home or hospital, what signs there are if our loved one is about to die, is there anything we should be doing if we are with them..so many unanswered questions.

There are great booklets produced by many charities but I think the fact that we can talk to each other here, in our own space, is invaluable.
In the period leading up to mum's death I took great strength from this forum and it made it easier to cope when mum did die..I would dearly love to do whatever I could to help someone facing the same situation if possible. I think most of us probably feel the same way. Even if it is a virtual hug, as Sis Minnie has said, it is helpful.

Got tears in my eyes now so shall shut up. x

Re: A difficult subject

Posted: Mon Nov 26, 2012 9:48 pm
by bowlingbun
Sadly, I found my husband dead in bed, he was freezing cold, and had obviously died some hours earlier (heart attack). I called the ambulance, they explained that the police would be called, as it was an unexpected death, and that there would be a post mortem, so he would be taken to hospital. I already knew that was the procedure (I used to work in a small hospital in the outback of Australia and it was one of my jobs to ensure procedures were followed). A local undertaker arrived, I think they had a contract to take unexpected deaths for post mortem. It was the company we'd already used for an earlier family funeral, and it all went very smoothly. To anyone who may be facing this in the not too distant future, I would say that whilst a death in the family is obviously distressing, that the undertakers are very experienced and will be very kind and gentle, and will guide you right through the process, step by step. Most important of all is knowing the wishes of the deceased. Fortunately, my husband and I had discussed this, quite by chance following an article in a magazine, he was adamant that when his time came, he wanted no fuss, no frills. There seemed to be an expectation that we would take our steam roller, traction engine and lorry in some sort of parade, which others have done - but we were in no fit state to sort out anything like that. When people were surprised at our low key approach we could explain that it was exactly as he had wished. Nevertheless, the largest chapel at the crematorium was packed to overflowing with all his friends. It is also worth considering who you would like to give the address, my OH's best friend declined because he knew he'd be too upset. We wrote to tell everyone on our Christmas card list to tell them what had happened, and to contact the funeral director if they had any queries, which certainly took the pressure of us - but we were always told who had called them. Sorry, this is a bit disjointed, but I hope that for those who might be in a similar situation, it might help.