I'm sorry to be so depressing, but does anyone have such a thing as a checklist of things to do/people to contact after a death?
Our GP has said if it happens overnight or at the weekend I should contact an undertaker, so I'm presuming that a postmortem won't be carried out.
But who else should I notify? I just want to be prepared.
You are from the Uk but here in the US is a website called "National Caregivers Library" I think if you look up that, you'll find some good info. For me, my husband had a real scare and we want to donate his brain for PSP research. The form was gotten by CarePSP.org . It said to get a funeral home and make sure to tell them not to prepare the body. Then it is sent to the nearest Medical Examiner who will retrieve the brain and send it safely to a PSP research facility.
I say all this to say that you can get the funeral set up now for when the time comes. I say that this is a must. Know what your loved one wants, if you have a headstone and a cemetery in mind make sure that all that is in order this again is done with the funeral home. back to National Caregivers Library It provides lots of information to help the carer through this process....I read on activities you can do with the patient....writing memoirs to doing the most active thing they can do. One man loved corvette racing cars. HHis hospice organized cars to the mans home so he coul look at them he actually got to ride in a vintage car around his neighborhood....! That's another thing I don't know how the UK does it (til last week I didn't know how the US did it) but if you can get hospice involved with your loved one, they will help you with ALL of those questions....
Good luck and keep preparing!
AVB
Many thanks AVB yes we are in the U.K.
As far as I'm aware of, the undertaker cannot come unless they have received orders from the Dr. while the pt. is still alive, letting them know that this death is an expected one due to complications from the pt's diagnosis and that it is not necessary that the medical examiner come to the house. If hospice is involved, they can come to verify death and fill out appropriate paperwork. This subject should be addressed with hospice ahead of time. All things related to these actions after the pt has passed , hinge upon the pt's MD making sure that these entities know the pertinent facts about the pt's prognosis and diagnosis. This means that he/she needs to be in contact with the funeral home/hospice ahead of time so the after death process can proceed smoothly. You should provide your Dr with the name and phone/fax numbers of the funeral home and hospice and make sure that the communication is properly carried out and that all parties are 'on the same page' .
If you're in GB I believe that things would also follow along similar guidelines, though I could obviously be mistaken.
You do what you should do for the sake of yourself and for your loved one. It's emotionally difficult enough let alone having mass confusion and a three ring circus when someone dies at home. Tried to hit the important points. As I don't know the personal particulars, apologies if I'm off base regarding your situation.
Take care. Wishing you all the best. Peace,
Elise
Thank Elise, I will tell our GP, yes we are in the UK.
Hi, Steve died early in the morning, we just called out the Rapid Response team, that had been looking after him. They gave us a form and we could then call the undertaker. Don't worry, everyone will look after you. Although up until now, the professionals haven't had a clue how to look after our loved ones, once death is very close or happened, they finally know what to do and can actually perform to a high standard. I know it seems strange, after having to cope with everything on your own, but I can assure you, you will be very well cared for.
Lots of love
Heady
Well said Heady. I thought the same. How much better it could have been if our loved ones had received as much help and attention from the professionals as I got once I was on my own. I hope you are doing OK.
XxxX
Been better! As to my thoughts about the professionals. I got a lovely card from our GP, saying really sweet things. Nearly threw it in the fire, I wish he could have spent that five minutes, caring for Steve, before he died. Hey ho!
Lots of love
Anne
I'm not going to say anything bad about the ones who recently cared for Bruce. However they based prognosis on a healthy man...I wonder if their prognosis would have been more concise had they known how one responded with PSP...
But so far aside from emergency team , we have had really only one who took that 5 minutes....and he was the PEG surgeon....only saw him twice...such a nice man....
Hospice seems very caring, though not well in the know...how bout that
AVB
Thank you Heady for replying, I hope my question hasn't been too painful for you.
We are very lucky that our GP is very supportive, as is the Consultant. I am too damned independent for my own good, and try to do everything by myself, as then I know things are done! (I do have Carer's in for an hour twice a day to help with getting G up etc, and for a 3 hour sit in a Friday.) I am pretty useless in asking for help. The enormity of what will happen when the time comes is starting to get a bit overwhelming as G will not talk about the end (which I totally understand). Her speech is so weak and slurred now so don't want to push her now anyway.
I suspect that pretty much all of us on this site is a control freak, or has become one, thanks to PSP. Steve would never discuss the end, but he stopped talking, two years before he died, so I suppose never really believed it was happening.
I would suggest you try and get another sit fitted into your care package. Have you had any respite yet? It really is very beneficial. For me, apart from the break, it provided a safety net, that I knew I had a safe place that Steve could go, if I couldn't cope anymore.
Try not to get bogged down with worrying about tomorrow, I know it's hard, but you must admit, today's challanges are enough to keep the mind extremely occupied!
Sending big hug and much love
Lots of love
Heady
If you are in the U.K. and death occurs during GP hours you can phone and let the doctor know. Someone will then come and certify death but it can be a few hours later. Certain Hospice staff can also certify death but I was told not to ring them outside opening hours. If death occurs during the night or at the weekend phone 111 and tell them. Again it can take several hours before a doctor certifies death. After death has been certified the undertaker can remove the body. They will tell you what to do next.
If your loved one has arranged to donate their brain or spinal chord for PSP research, as did my husband, it is different. The body must be in cold storage within 4 hours. Contact the organisation or hospital where the original donor forms are held before death takes place if possible and they will tell you to contact an undertaker before death so they are prepared and confirm they have suitable facilities. My husband died on a Sunday evening. I dialled 111 and was told a doctor would be with me within 6 hours. I told the phone operator that I wanted someone within the hour so my husband's tissue wouldn't be wasted. I then phoned the undertaker to warn him he would need to collect my husband as soon as the death was certified. The doctor arrived and hour later. My husband was taken from our home two and a half hours after death.
The undertaker told me that several donations failed due to late certification of death and he had never known the doctor to arrive so quickly after a 111 call.
Once the deaths certificate has been issued and you take it to the registrar, they will explain what to do next. They were very helpful.
My husband had seen a GP 2 weeks before death but as that doctor became sick and couldn't write a report, I was told there may be a post-mortem. It didn't happen though as the coroner and two independent doctors had long phone conversations with me and I explained everything.
I worried about what to do after my husband's death but it all went smoothly and everyone involved was very helpful and gave me lots of information.
X
Thanks NannaB, yes we are in the UK
I forgot to mention, that G has told me in no uncertain terms that none of her organs are to be donated, although personally I don't have the same view, I will respect her wishes
Not depressing, admirably strong. Thanks for bringing it up. It's important for us all. Love, ec
It's good to have an idea of the procedures to follow otherwise things can be very confusing. As others have said, the death has to be certified by a doctor before an undertaker can be involved. My experience was in hospital so things were a little more straightforward - BUT it took some time before the duty doctor would put PSP as the primary cause of death. Otherwise, Bugs would have died of a urinary tract infection.
There is a tendency for the underlying cause to be noted on the certificate (easier for the doctors and registrar) and this leads to an under recording of the number of cases of PSP (and probably CBD). After the initial certification has been done, the undertakers will guide you through the next stages. If you are in the UK, the registrar will tell you about the "tell us once" scheme where there is a central organisation that will inform all sorts of agencies. This saved me a lot of time and heartache as there was then no need to constantly repeat information.
My thoughts are with you.
Thank you Tokki
This might be helpful.
ageuk.org.uk/money-matters/...
Best
Kevin
Thanks Kevin, that's a great resource and have bookmarked it for when the time comes.
This is not exactly what you are looking for (as it doesn't address exactly whom to call upon death) but it's in the same vein:
brainsupportnetwork.org/100...
A few things on that list are US-specific.
Robin
Many thanks Robin, all info helps
Oh god, I thought I'd really thought about this but clearly not! I mean I have but I haven't, make sense? Probably not!
Anyway I thought when it does happen I'd ring the hospice and they'd take over but maybe not, if it's out of hours? So from reading I'm thinking 111? And then it could take hours before they take my Dad? Oh god, I do NOT like the thought of that!! I'm a bit funny about this!! What I mean is, I don't really like/relish the thought of a dead person in the house! Anyone understand?
Sorry this may sound wrong cos I'm talking bout my darling dad but this worries me, a lot!!
Crikey, I'm pleased you've posted! I need a bit of clarity! I can already hear Heady saying, don't worry til it happens, just get on with today, but I am worrying
HELP!! X
Ok Satt2015 .......... breathe!
Don't panic as it really won't help, it's just a wasted emotion. The link that Kevin_1 has posted explains a huge amount.
I going to the hospice tomorrow afternoon for counselling, and a friend has just emailed me to say she has left some info for me with the counsellor, so will let you know what that says once I've digested it.
I totally understand your thoughts of having a dead person in the house. That doesn't worry me ..... yet,! I am hoping that I will look at it as a shell, and not the person I love, but I won't know until it happens of course.
How are the rest of your family feeling, are you able to talk freely with them?
You can't let go of that breath now!
Thank you gadget geek
I think I'm gonna ring my counsellor at the hospice tomorrow to discuss further (good idea of yours, thank you)!!
This just made me panic a lil bit, but it's something I need to face!!
Bloody Psp!
X
Sorry for the delay in coming back to you with the link that th hospice gave me (we've been having a difficult time with yet another infection).
Look at: which.co.uk/money/what-to-d...
Aww thx you x
Oh yeah and sorry no, I've not discussed this, yet.....with family, in any detail, I need to get my head round it first! X
Again I understand, I haven't discussed it with my family either
Bless you, it's very very difficult isn't it? ❤
Totally. But with this I don't want anyone taking over. It will be the last thing I will be able to do for G ☹️️
😓
I know that feeling. Talking about their imminent death as if you're asking them where they want to vacation! I did have that talk sort of yet again , the other day. I asked B " is he ready to die "no"; is he prepared to die, "yes"; is he in pain/ does he panting bother he/ does he feel out of breath, "No"is he scared/sad "no"; does he want to continue with the morphine,"no"; Does he want to continue hospice began numerating the months, ex. for 1 month 2 ,3 etc...no answer he then said two months....In the beginning of this conversation, I laid my feelings out on the line...that I believe his condition has gotten worse and it scares me. I am as uneasy giving him Morphine as I am not giving him the drug, but I feel like I am forcing death with the hospice hanging around....I think I told him I don't want him to leave but I want him to know it's ok......
I tell you I was sweating bullets I was so very direct and he seemed ok with it...asked more q's, he answered ,we got up to start his day! This was not the first conversation though most of them was bringing up my death and what I wanted ...no funeral donate all body etc....and asking if he wants that too ...So I have never talked directly to him about his death and illness.
Whew that was a hard conversation, for me at least...I wonder if other patients would be upset bringing their prognosis up for conversation....
AVB
We are lucky, after my father in law passed, my mother in law bought her plot and paid for her funeral. Here in Canada, the funeral home arranges posting the death notice in the papers and gets all the necessary paperwork done with the government.
Also, in Canada if someone dies at home we have to call a Coroner, they pronounce the person dead. If it happens in the hospital you have to pay a doctor to do this...then we arrange with the undertaker to retrieve the body.
Like so many have said, after death everything runs quite smoothly, pity that it couldn't run smoother when they were alive.
In our case, we also used our accountant to help out with the financial aspect of death. You have to transfer property, bank accounts and retirement funds over to either a spouse or children. Getting sound financial advise from someone you trust is key.
Just a few thoughts from our experience
Hugs
Paola
Things to do for PSP – sing a PSP country song (badly!)
Death because of Aspiration 
CBD - Cause of death was pneumonia.
Impact of family death on PSP
