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Caring for someone with a terminal illness

Practical things after death

When someone dies many decisions and arrangements must be made, many of them difficult at a time of grief. For instance Janet said she had felt numb as she tried to think about the immediate practical things she would have to do. Katie said she had been given a booklet that explained what to do. 

Initially, a medical certificate showing the cause of death has to be obtained. When a patient dies in hospital the certificate will be signed by a doctor and issued by the hospital’s bereavement office. When a patient dies elsewhere, the death still has to be certified by a doctor. Although a community nurse was present when Simon’s wife died at home they had to call the GP in to certify the death. Sarah found the family doctor most helpful when her mother died although she found it strange that he couldn’t put ‘old age’ as a cause of death instead of her medical conditions.

 

Hospital staff had not explained to Maggie the procedure for issuing the cause of death...

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Age at interview: 57
Sex: Female
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So the doctor said that he would do the paperwork and we assumed he’d be back. So we sat there for an hour and a half. We, we rang my stepdaughter, who was on her way, said, “Don’t come in, darling. Dad’s died. Come here. Come to my house and we’ll be there as soon as we can.” And after about an hour and a half my stepson went to see what was happening and apparently, we could have gone at any time, that we thought we were waiting for the certificate, not the death certificate not the death certificate but the certificate to say that he’d died that we needed to get the registration. But, apparently, they said, “No, the bereavement.” They get they then gave us an hour and a half, they gave me a leaflet about the bereavement office and said that they would be in touch and then we’d have to go back in to get the certificate to take to the registrar and because Donald had died out of [county] we had to go to [town] to register the death.

I’d been home about twenty minutes when the bereavement office rang me to say they had it. So I said, “Well, we’ll have to come in tomorrow and do this.” And that’s what we did. End of story.
 

Sometimes it is necessary for a post mortem to be carried out. Mary was offered a private post mortem for her husband so she could find out where his cancer had originated. There were a lot of forms which her brother-in-law helped to complete.

The death must then be registered with the local registrar of births and deaths; in England and Wales within five days. Janet found the registrar very sympathetic and helpful when she registered her partner’s death. The registrar spent time with Janet talking through practical details and advising her how many copies of documents she would need. While Fiona and her sister both registered their mother’s death they decided to share sorting out other paperwork.

 

Cassie felt it was important that she took the responsibility for registering her father’s death,...

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Age at interview: 26
Sex: Female
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Did you have to sort out all the legal stuff, the death certificates and that sort of thing?

Yeah, yeah. I remember I think it must have been the next day or the day after, there was this just this huge anxiety that was hanging over my mum about, “There’s so much paperwork. There’s so much paperwork.” And I just knew that I wanted to help and I still wanted to have some control over everything. I didn’t want to sort of lose any of the control that I’d had and, probably, filling that gap of where I was sort of like there to help and there to care. So I did the best I could, and I’m not very good with the sort of legal work and the paperwork stuff but because they had the business together there was a lot of and the bank cards and there is so much stuff that a lot of that my sister helped do. And my mum did the best she could and I said, “I’ll register the death.” You know, straight away and everyone said, “Do you want me to come with you? Do you want me to come with you and hold your hand?” And I said, “No, no, no. I’ll go on my own. I’ll do it by myself.” And I think I wanted to have my name on the death, on the death certificate, daughter, [Name]. I don’t know why but I think there was something about me being able to do that and certify that he was gone, that he was dead, that sort of was a bit therapeutic for me, in a way, I think.
 

 

Poppy had help with the paperwork from her dad’s friends. When she registered the death she was...

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Age at interview: 27
Sex: Female
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Yeah, I had some help from his best friends, who were absolute rocks. I mean I couldn’t have done it without them. They did a lot of the paperwork but, yeah, I mean I think it’s something as symbolic and as kind of, what’s the word? It kind of corporate, not corporate but just so formal as signing a death certificate, I found really bizarre, that process was… You know, you could just see the list of other people who had died that weekend, you know. It’s just really like a punch in the stomach and that’s only something the next of kin can do, so, you know, I found that kind of, that side of the, it is a process, when someone dies. There’s a lot of papers that need to be signed. There’s a lot of formality. There’s a lot of, you know, small things like phone bills and electricity and everything and shutting it all down and bank statements and closing the bank account, which is so final.

Yeah, I had help with that but essentially, the next of kin does the majority of that, or at least signs everything. And they were very good to be as discreet about it, my friends, as possible and just say, “Just sign this.” You know. Because they know that’s painful, to do that.
 

 

Theadora and her father went to the local register office to register her mother’s death. It felt...

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Age at interview: 45
Sex: Female
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Were there practical things you then had to do?

Yes. We obviously had to go and register the death and I went with my father to do that at the nearest sort of registry. That was, and that’s bizarre, because you’re sitting with people who are registering births. And that’s a, in some ways it’s lovely, in some ways it’s lovely because you are sitting with people who are celebrating, I can remember sitting next to a man who was celebrating the birth of twins, and he was in a complete state of shock. And, and it was also in a place where there were people who were migrant, immigrant populant, who were coming in to get various other paperwork around that. And you’re all sitting together in a waiting area, very squashed up and it was very hot as I said. A very hot summer. And you’re registering a death. At one level there was something quite nice because as you know in death, there’s life. Things go on. Life happens. So, I wasn’t appalled by it, but it was a very strange thing to be in that mixture of a place.

But the actual then going in and registering it and doing that was dignified. I couldn’t again say that it wasn’t.

And then we had to do the process to get her buried. Jewish people get buried very quickly. So we needed to sort that out.
 

 

Simon was upset when the registrar said she had to keep the cause of death form signed by the GP....

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Age at interview: 39
Sex: Male
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Yeah I mean the nurses were there so they, they did that for me and then I think they phoned the GP straight away. And at some point she must have come round to officially declare Karen as dead and to fill in I think a bit of paperwork at that time. Not that I had to be involved in any of that but she needed to come in and sort of ascertain that she was dead. And which, I didn’t mind, I knew that they’d have to do that.

And then did you have to go and register her death the next day or, did you have to go somewhere?

Well you’re given a time period of maybe two weeks, that was that was pretty awful I must admit because, well there’s a whole new story of doing that because it’s at the same registry office down the road that we registered our marriage in.

And the woman dealing with me, I went in with my sister and the woman dealing with me just was socially inept and she was she was just utterly clueless. I had a certificate with me signed by the doctor, the original certificate and the woman said that she would need to take that. And I wanted to keep it. Because it was symbolic, this was my wife’s death.

And she said, “Well you’ll get a copy blah, blah, blah,” and I you know and I was saying, “Well no, I don’t want, I want, you know I’d like this one.”

And she’d already just been very officious; I mean the whole thing was just very officious. You know considering I was registering my wife’s death, there was less than, well I don’t know it was only days previously, their attitude was you know the same as when we were, register your marriage.

They were very officious about this being a very legal thing and just inhuman. I mean I was gobsmacked. And, and it started to upset and annoy me, you know being a bloke, being upset actually made me frustrated.

So I think I was already feeling very sort of just awful about the whole thing. And then she started arguing with me about whether I could keep this thing, and I was saying, “Well could you do a photocopy for me?”

And the way that she dealt with it was just very abrupt and very defensive. I mean she, you know, I don’t want to get too psychological but she was so defensive that she got aggressive with me about, “This isn’t your property,” and blah, blah, blah. And it was the most awful, awful exchange I’ve ever had.

Given the circumstances and we didn’t have a sort of stand-up row, I was just sort of being assertive, but it was just very, very disappointing. So, they did send me, I never filled it in but I wish I had, they sent a questionnaire a few weeks later about, “How was your experience?”

Oh.

And, I really, if I’d had more time I really could, would have liked to have spelt out to them how they need to do some training. You know. But anyway.
 


After someone dies the dead person’s ‘estate’ has to be to sorted out, involving a lot of paperwork. A person’s ‘estate’ is their money, property and belongings at death. A solicitor can be engaged to help with this, but at a cost. Mary said she felt overwhelmed by all the paperwork she had to deal with. Fiona and her sister found it helpful that they already knew certain things that would have to be done when their mother died, and they shared the paperwork. Others had been grateful for help with this from extended family and friends.


When a patient dies in hospital the family is invited to view the body in the hospital mortuary. Sarah had never seen a dead body before she and the family went to view her dad in the hospital mortuary. Katie found it comforting to know that her sister-in-law’s body was at the undertakers across the road and she visited several times. Sue didn’t want to see her father’s body in the chapel of rest although her mother found it a great comfort to do so. Jane felt it was important that her children should see their father’s body so they would know for certain he was dead and to allay any fears about what he might look like.

 The only legal requirement in the UK regarding funerals is that the death is certified and registered and the body properly taken care of, by either burial or cremation. Funeral ceremonies in the UK take many forms. They differ according to a preference for burial or cremation, and in line with any religious beliefs or affiliation. People can organise it with or without the help of a funeral director. The Natural Death Centre is a charitable project which gives independent funeral advice with information on all types of funeral. It is particularly helpful for those who wish to have an inexpensive, family-organised, and environmentally friendly funeral. 

Some patients had discussed with the carer before their death how they wanted their body to be disposed of and what they wanted at their funeral. This could be comforting for the carer as they could arrange everything knowing that it was what the deceased person wanted and it could avoid potential conflict between family members who might have wanted to do things differently. Sometimes only certain aspects of the funeral had been specified in advance so families had to choose others based on their knowledge of the person’s tastes. Some could also draw on their recollections of conversations from long before the person had been approaching death.

Ruth’s mother had sorted out her funeral and paid for it in advance. The deceased person’s bank will release funds to settle funeral costs even after their account has been frozen, so long as it contains sufficient funds. Janet found the funeral directors helpful and feels fortunate that she knew exactly what her partner had wanted for her funeral. Val didn’t know her husband’s wishes regarding his funeral, but found he had underlined tracts in his bible and these were used at his funeral. David organised his wife’s funeral using clues from before she died; it was not overly religious and had music she liked. Cassie’s father did not leave any specific wishes for his funeral only that he wanted to be cremated. Cassie and her mother arranged the funeral together, choosing music they knew her dad loved. It was difficult deciding who should carry the coffin but her mother chose people she felt would be honoured to be coffin-bearers.

 

Mary found it difficult to make decisions at the undertakers and chose the most expensive options...

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Age at interview: 68
Sex: Female
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And we, he took me to the undertakers and that was a kind of surreal oh, experience, you know, I think I thought to myself, “Oh my goodness. I can’t believe I’m in an undertaker’s place.” I’ve never been in an undertaker’s place in my life, you know. It had always been someone else’s responsibility, you know. My eldest brother sorted out the arrangements for my parent’s funerals. My brother-in-law had sorted out the arrangements for my parents-in-law’s funerals and I was used to being the youngest in my family and now, all of a sudden, I was the last one left. And I had to make decisions.

So we sat at this table and there was a side of me that actually, you know, inappropriately wanted to laugh because if my husband had been there we’d have been joking and saying, “My goodness, you know. There’s, what is this? Is this the, you know, these people are like the Addams Family,” [laughs]. And there was a there was a grandfather clock chiming somewhere, you know. It was all sort of a bit gloomy and we sat round the table and they said they gave me a catalogue and they said, what kind of a coffin did I want and I’d said, “Well, you know.” And they said, “Well, this is the less expensive end of the range and that’s the more expensive.” And I just turned the page to the most expensive and I said, “I’ll have that.” And I just did the same, whatever choice I was given I would say the best and the most expensive [laughs]. And, at the same time, there was this questioning voice in my head off, “Yet can you afford it?” Because he was the one who looked after the finances, not me. He’d always looked after the finances but my thinking at the time was, “Well, he deserved the best. He deserved the best so he’s going to get the best.”

We were planning that year to have a combined party because we were both sixty. We were both going to be sixty that year and our daughter was going to be thirty, our younger daughter. So it’s and we were going to have a combined party and we had a caterer, our favourite caterer, who had done family occasions before and we were going to ask him if he would do the party. And I rang him up and I said, “We were going to ask you to do the party but really sorry, but would you do a funeral?” And he went, “A funeral?” And I said, “Yeah, I’m sorry to tell you, you know, my husband’s died.” And he was really shocked because he and my husband got on really well and he said, Oooer, I’ve never really done a funeral but since it’s his funeral, we’ll do it.”

So, yeah, so they did and yeah, that all passes off almost in a, you know, I couldn’t be specific about it because I was in a bit of a daze to be honest. I know that I know that they keep giving you choices, you know, and later on, it occurs to you that you might have made a different choice but I just I made a choice at the time, you know, and they said did I want him to be kept overnight in the church, you know, and I can’t ask him. I can’t say, “Would you like to be kept overnight in a church?” You know, [laughs] so I thought, “Ooh, well, what if someone breaks into the church and then, you know, it would be and, you know, there are some funny people around at night.” And it felt insecure so I said, “Oh, no. Keep him in the undertakers.” You know, and, “Would you like him to be brought to the house beforehand?” So I said, “Yes, oh, yes.” Because he loved his home and I know he’d miss his home and so they did.
 

 

Sarah and her brother planned simple funerals for their parents in the little cemetery chapel....

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Age at interview: 57
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So did you find that organising the funeral fell to you?

It, well, it did we did, my brother and I, yes, we took it on. We’re rather a do it yourself family and we did do it all ourselves and my brother actually trained as an actor originally, so he was, he wanted to officiate and, and we simply had, we had it, Mum and Dad just liked things simple really and we had it in the little chapel in the local cemetery where the burial was. So it was sort of old fashioned these days but sort of, because actually, as it happens, the crems are a long way from here so although Dad might have preferred to be to be a crem because he said that once. One; I don’t think he was that bothered and two; for Mum, it was it meant that she could be at Dad’s funeral, that it was just local because it would have been too far to travel to the to the crematorium, as it happens, from here.

And my brother and I, we just, you know, we both we chose poems and wrote things and got cousins to say things and didn’t involve anybody else actually, apart from friends and family. Obviously, it was a funeral director, who was lovely and local and very good and we did the catering ourselves and it worked very well for Dad. And it was a nice chapel because Mum and Dad obviously, not being in their home area and being the age they were, there weren’t a whole lot of friends of theirs who could attend. But the carers, I mean the agency gave, I found out the agency gave the carers time off to come to the service, which I think is fantastic. I still haven’t written to thank them.

So they were just very personal services and then, because it was in a chapel and a cemetery, it was just a short drive down to the actual woodland burial site and Dad conveniently died, he liked things efficient. He conveniently died in March, which was when they put the, one of the two months they put the trees in and at before the end of the tax year, so that was very helpful [laughs]. And Mum, obviously, was at Dad’s and we just did a personalised for her but with, with her music that she’d chosen. And it wasn’t too snowy at that point so it was yeah, can’t say a rerun but it was, you know, it worked so well and we were happy with what we did for Dad that we just followed the same pattern for Mum, which just felt right really.
 


Poppy describes her father as, ‘a very unconventional and eccentric soul who never conformed’ and so his funeral wishes were not traditional. He did not want anyone to attend the crematorium but wanted a garden party for all the family and friends. David (Interview 35) felt it was important to take his sons to their mother’s funeral. The wake after her funeral reflected her wishes to have a social thing rather than a ‘standing around glum-looking thing’ so there were lots of flowers, lots of great food and lots of people including ‘children dashing around having fun’. Theadora arranged a traditional Jewish funeral that was attended by about 300 people. As Jewish funerals traditionally take place very shortly after the death, she had to rely on people passing on the message about her mother’s death quickly amongst their networks.

Although Susan made all the arrangements for her mother’s funeral, she did not feel the need to attend herself. Janet’s partner’s parents were unable to attend her funeral due to a medical emergency, so Janet arranged for the service to be recorded for them. Heather had arranged for a friend to give the eulogy at her husband’s funeral, but unfortunately he was stuck in traffic and missed it. Heather had given a copy to someone else but they had forgotten to bring it to the church. Heather remembers ‘an awful silence’ when the eulogy should have been read. Peter (Interview 33) found it a great comfort to hear things about his daughter’s life that they hadn’t known, from her former school and college friends who attended her funeral.

After a cremation families are given a choice of what to do with the ashes. They can be kept or disposed of by the undertaker or given to the carer to keep at home until they decide what to do with them. Jacqui had her husband’s ashes scattered where they had done their courting. Val hasn’t decided what she wants to do with her husband’s ashes and is concerned about the costs of a casket and burial.

 

Lynne was angry that the funeral directors expected payment so quickly after her mother’s funeral...

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Age at interview: 53
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And is your life getting back to normal now or not? How do you feel about things?

Yeah, I suppose now. I mean I was, the first sort of week after, there’s just nobody prepares you. As much as, my mum was very organised and she’d got life insurance and she’d got a will and she told me what she wanted at the funeral and what flowers and all the rest of it that’s, you know, nobody was to wear black. But the reality is, yes, you just run around because you have to go to register her death and everybody wants, you have to write to all these people, HRMC about the pension and all these different, and the mortgage company and all of that side of it and arrange a funeral and pay for the funeral. And, you know, no sooner have you had the funeral and then they send the bill in and they give you seven days to pay the bill and yeah, it’s just, it’s all about money. Everything to do with death is about money, whether there’s money in the pot for you to have a carer, whether you’ve got money to pay for the funeral, whether you’ve got money to do this and yeah, it all revolves around money I’m afraid. The only people that seem to get rich are the funeral directors [laughs].

So was it a good do, her funeral?

Yes, it was. Don’t remember too much about it but everybody that went said it, I did her proud. We did a church service, just one hymn, just the Lord is my Shepherd and the guy that took it, we know. He’s not a friend but he’s an acquaintance. He also my, married my daughter and our son-in-law last September, so it was quite and he did mention that in the service. And yeah, we had Dancing Queen to going in and then we did a civil service at the crematorium. So she had two and then she was cremated. In fact, her ashes are still there in a box. I haven’t, yeah.

Have you thought about what you’re going to do with them?

Yes, my mum wants, when my dad died my mum bought a grave from the council at our local cemetery, which is now full up. They’re now building a new one but we’ve got one of the last plots. So we’ve got the grave there with the headstone and everything and my dad’s ashes are in there. She wants to go in there with my dad. But I’m really cross again, with the council because they won’t let me dig the hole in the grave to put the box of ashes in. They have to dig the hole and they charge me three hundred pounds plus VAT to dig a hole. So everybody is on the take as far as I’m concerned.

The money that people want to do things and I just said to the guy, “Look. I’ve been on a manual lifting course. I’ve got hard hats. Steel toe capped boots and a high vis. I’m quite happy to dig a hole to put my mum’s ashes in.” He said, “I understand what you’re saying but I can’t do that because everybody would start doing it.” So, for the moment, Mum can stay here for, she can stay here in the warm.
 

 
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Julie's partner wanted his ashes to go into space, but at the moment she still has his ashes on...

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Age at interview: 58
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And did you talk about the funeral, how he wanted that? Did he have views?

Well, he’d always spoken about it even before he was ill he wanted to be cremated and he wanted his ashes to go into space.

Right.

They don’t take all of them, only small amounts, so I’ve still got the ashes.

But you have arranged for some to go into space.

Well, I haven’t done it yet but [laughs] I’ve still got them in their entirety on my dressing table [laughs].

How is that? Do you feel that that keeps him around you or it’s just how it is?

It’s just how it is. I mean, you know, I was talking another friend of ours and we have we had a mutual friend, who passed away, and he took care of this old man’s funeral etcetera and he took his ashes on holiday with his with the family [laughs].
 


Keeping occupied helped some cope with the immediate time after the funeral. Although most people managed to inform family and friends of the death, after the funeral there were often others who had to be informed. Janet recalls responding to many letters and cards of condolence.

Any equipment that had been obtained on loan to support patient care in the home had to be returned. Sometimes this was collected very shortly after the death. The nurses arranged for all the equipment Cassie had for her father to be removed within two days, and then a week later the nurses came to collect any medications that were left. In other cases the equipment was not taken away quickly enough. Roger (Interview 32) found his garage was ‘stacked up with equipment’ which he struggled to get collected, until he contacted the local Patient Advice and Liaison Service (PALS) who arranged collection within a couple of hours. Heather found that the oxygen was collected very quickly after her husband’s death, but on the day of his funeral the hospital bed supplier rang to arrange to service the bed rather than take it away.

Carers also had to sort out the personal effects of the patient. For John (Interview 12), collecting all his son’s things from university was very sad and brought back memories of Tim as a student, who loved university. Susan had to clear out her mother’s house after her death. She found over 2000 photographs which her husband is sorting through for the family. For some carers who have shared a home with the patient, there is no need to rush sorting through possessions. Georgina has been gently going through her mother’s things and although she thinks she may be keeping too much, she feels she has ‘all the time in the world to go through things’.


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Last reviewed December 2017.
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