1. Expert Q&A: Dementia Research, Tuesday 26th March, 3-4pm

    At Alzheimer's Society our research program focuses on improving care for people with dementia today and finding a cure for tomorrow.

    Hannah from our Research Team will be answering your questions on all our research efforts on Tuesday 26 March between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Elle3

    Elle3 Registered User

    Jun 30, 2016
    #1 Elle3, Mar 14, 2019
    Last edited: Mar 14, 2019
    Not sure which section I should be writing this. But it looks like I will have no need to be here now for much longer.

    After suffering from Dementia for the past 5 years, at the age of 82 my dad sadly passed away last night. I was called by the Care Home to say there had been an emergency and dad had suffered a respiratory arrest. When I got to the home, I was told they had been unable to resuscitate him and he had passed away. Ambulance staff were there and Police arrived later.

    It was all very quick and unexpected as he was still very well apart from his Dementia getting worse. Care home staff were just as upset and in shock as I was. All I can say is that at least I don’t have to witness the Dementia taking more and more of my dad away and he died still recognising me and knowing I cared and loved him.

    Elle x

    PS. I’m sorry, I also meant to say a big thank you to everyone on this forum for sharing your stories and information and for all the support you have given everyone and me. I have found this forum such a great help and so friendly. Thank you.
  2. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    So sorry to hear of your dad's sudden passing away. Whilst we know that dementia will inevitably take our loved one to end of life it is a shock when it happens suddenly.

    Your dad would be very proud of you and the constant care and love you gave him. My dad also went suddenly and whilst we have mixed emotions I too was relieved for him that his torment was over.

    Thinking of you and hope the next few weeks are kind to you x
  3. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    south-east London
    I am so sorry for your loss @Elle3 - such a shock for you that it happened so suddenly too.

    I am glad that you are able to take comfort in that your father still knew you and that he was aware of your care and love for him. It does help ease the pain.

    Please don't think that the support available to you here ends with the passing of your father. We are still here for you through dealing with your loss and we have a forum specifically for that purpose at https://forum.alzheimers.org.uk/forums/after-dementia-—-dealing-with-loss.28/

    Please continue to offload your worries and feelings as much as you need to - there are many of us who find ourselves at the end of the carer role but still in need of a safe and supportive place to talk.

    Wishing you strength at this difficult time.
  4. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    I’m sorry to read about your dad’s sudden passing @Elle3. I know how shocked you must be feeling as the same happened to my dad just before Christmas. I too arrived to find the ambulance and the police there.

    As you say, he is now free from the grip of dementia and I hope you’ll be able to see this as a positive in the future.

    Thinking of you.
  5. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    sad news @Elle3
    I'm glad you are comforted by knowing your dad knew who you are and how much you mean to each other, and believe me the relationship will continue to mean a great deal to you
    hearing how upset the staff are makes it clear that they really cared for your dad - I wasn't with dad when he passed but was massively reassured that he was being looked after at the end by folk who knew him well and cared about him and me
    my condolences
  6. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    So sorry to hear of your sad loss. Wishing tou strength for the coming weeks.

    There are many of us still here, using the forum long after our losses, please post if we can help you at any time.
  7. canary

    canary Registered User

    Feb 25, 2014
    South coast
    ((((((((hugs))))))))))) @Elle3

    I expect that came as a shock - please be gentle with yourself
  8. Feistywoman

    Feistywoman Registered User

    Aug 11, 2018
    So sorry to hear your sad news, you must be reeling. As had been said take huge comfort and pride that your Dad knew he was loved and well cared for, take care x
  9. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    So sorry to hear this @Elle3.
  10. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    So sorry @Elle3 I have followed your story of your dad and you have proved to be a truly loving and caring daughter, your dad was lucky that he had you and I am sure that he knew that.

    Be kind to yourself and wishing you well.
  11. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    So sorry to hear your loss, such a shock when he was well in himself.

    Look after yourself
  12. Elle3

    Elle3 Registered User

    Jun 30, 2016
    Thank you everyone for your kind wishes and thoughts. Today has been hard just telling everyone and coming to the realisation that I'm now an orphan at 53. My dad's elderly cousin when I rang her said she lost her mother when she was 66 and she suddenly realised she was an orphan and she said this to me, at least she made me laugh and cry at the same time.

    Nothing is simple though. As dad was well and in good health apart from the Dementia he very rarely saw a GP, the only GP he has seen was one last Thursday, but he was an out of hours GP. This has all been explained to me by the Coroner. The Coroner has said he would rather not do a Post-mortem and after speaking to the out of hours GP they have concluded that the reason for dad's death was A1 Dementia, ie. late stages, which was obvious to him and a Paramedic who attended last week (I wasn't told about this fully, only that dad had woken with a limp that morning and seemed in pain, specialist nurse came out but could see nothing wrong so prescribed paracetamol, but the unit nurse said dad got worse throughout the day so she called the surgery again and demanded they send a GP and that's when the out of hours GP came, who also could see nothing wrong, but dads STATS dropped whilst he was there so he called the ambulance (this is the bit I did not know about), but they decided between them that it would not do dad good, taking him to hospital due to his late stage Dementia). Can I ask has anyone heard of A1 Dementia?

    The problem now is that the out of hours GP does not have a Death Certificate pad and does not know how to get hold of one, but he is going to try, then there is the problem of how I am going to get the certificate once it's done. Now the Coroner has said I can accept the reason for death as Dementia but if I don't want to, then he will carry out the PM, but the conclusion could still be the same, reason for death Dementia. I have seen far too many episodes of Silent Witness to really want to put my dad through a PM and if it can be avoided I would be happy to accept their conclusion, I didn't quite say it like that to the Coroner but along those lines.

    Elle x
  13. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    When my dad died unexpectedly the coroner agreed to let dad's normal GP do his death certificate so there was no postmortem. I was asked about the care he received at the care home and as I was happy with it the coroner signed him over to GP.

    Dad died in December and hadn't seen GP since the October before.
  14. Elle3

    Elle3 Registered User

    Jun 30, 2016
    Thanks Bunpoots. I think this is what the coroner wants to do now with my dad, it's just that it's complicated by the fact the only GP that has seen my dad in the past year is an out of hours one and he currently does not have access to a death certificate pad. I hopefully will know more tomorrow as the Coroner is going to ring me again after he has spoken again to the GP. Elle x
  15. charlie10

    charlie10 Registered User

    Dec 20, 2018
    so sorry for your loss @Elle3 ....we hope for a quick and easy death, but it doesn't lessen the shock if it happens. And losing a parent when you're older doesn't make it easier, he was still your dad. Take care x
  16. Maggie

    Maggie Registered User

    So sorry about reading that your father has passed away so suddenly

    I cannot undertand why the doctor is worrying you
    about not having a pad to register your father death .

    As you have to pick up the Death Certificate at your local
    nearest register office.

    Also even if the course of death is not known they will issue a temporary death certificate, so probate can be sorted out & send it in the post.
    which is not going to happen in your father case.

    As that is what happened with my son.
    Then after postmortem, I got another one stating course of death.

    Hope you don't mind me telling you this.
    Just wanted to ease your mind.
    I know how traumatic sudden death can feel like.
  17. Sirena

    Sirena Registered User

    Feb 27, 2018
    So sorry to hear about your dad, Elle, it must be a shock as he seemed in relatively good health.

    I agree with you that I would avoid a post mortem. I hope the GP can sort out the death certificate so you don't have that additional worry.
  18. Elle3

    Elle3 Registered User

    Jun 30, 2016
    Update. I have now been told that the out of hours GP who saw dad had got mixed up and thought dad was another patient, so no ambulance etc, he just saw dad for a minute about his leg. So he is unable to sign off the death certificate. The Coroner has now informed me that they will have to do a PM and that is booked for Monday morning. He said it will mainly be done via biopsies, hopefully this will determine cause of death and results will be in by the afternoon or Tuesday and then I can see about Registering the death. He also asked could tissue samples be sent for research and training purposes and I agreed.

    In the meantime I have booked the funeral for Friday 29th March at 2pm, undecided whether to book a wake as I think so few people will attend the funeral. The cost of the funeral was also a bit of a shock, it was a lot more expensive than I thought it would be, due to it being classed as out of area as dad no longer owns a property in the borough (I sold his house in November) and his care home was closer to me within a different borough, so no subsidy can be applied.

    I then followed this with a visit to dads bank, it was nice that they all still remember dad, I don't even need to give them dad's bank details they just know them and they were all sad to here the news of dads passing. I have an appointment booked with them for next Friday. I will definitely have to go through probate in order to settle everything. But account still active for now.
  19. Jale

    Jale Registered User

    Jul 9, 2018
    So sorry for the loss of your Dad, be kind to yourself
  20. lis66

    lis66 Registered User

    Aug 7, 2015
    So sorry for your loss ((hugs))

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