1. citybythesea

    citybythesea Registered User

    Mar 23, 2008
    coast of texas
    Originally I had scanned a booklet that was given to me by hospice. The book is awesome in that it gives foresight. Aim Hospice has given permission but in order to make things easier and not add extra work to those wonderful souls workload I have found it on the internet. I am posting the link as I know that when I go to the alzheimers.org website here in the US I do not end up on your website in England. (I wonder if this may have been the problem for you Bruce)

    The link I am posting is 3 paragraphs short of the booklet and that would be the forward. It is identical and just as easy to read. This is a wonderful website and has lots of easy reading to help out every one with a terminal illness whether it be cancer or later stages of dimentia.

    Bless all




    Hope this helps someone.
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Moderator note: At risk of totally confusing everyone - I have now removed Nancy's original post by agreement with her as the post above provides a link to the same information.
  3. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Nancy, thank you for that link. I've looked at it, and now need to download and print it.

    When I have the courage!:(

  4. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Thank you, Nancy

    I logged in earlier this afternoon and saw this during its transition - I'm not sure myself where its place is on the different sections of the forum (understand why Bruce moved it for now) ....... but from me a very heartfelt thanks .... I cannot believe I am looking at a palliative care plan for mum when just a few weeks ago she was so relatively independent ... (of course in our case - it is more complex than 'dementia' alone).

    Agree totally with Hazel - it's tough reading - in the sense we have to be in the right mood - but as with anything in life I believe 'forewarned is forearmed' and having some better ideas how to do my best for mum is - well - some small silver lining for someone feeling totally incompetent at the moment ...

    Love and thanks, Karen, x
  5. jc141265

    jc141265 Registered User

    Sep 16, 2005
    Is it just me, or do other people feel after they have read the link that their loved one has been exhibiting pretty much all of those things for years now?? Just posting here in case, some people new to these behaviours might panic thinking the end is near when it is not always so. Dad has been showing all these symtoms for at least 3 yrs now. For those for whom this link is appropriate I hope you find some solace in its words I know I will be re-reading it when again I think it is time.
    If we didn't try to feed him we wouldn't know he was hungry...but when we do try, he does eat quite well..Check?
    Have told Dad to not fight it unless he wants to, that we will be okay..Check.
  6. Lynne

    Lynne Registered User

    Jun 3, 2005
    Hi Nat

    I had just the same thought. Kind of confirms the "living death" feeling so many of us here have expressed.

    Hope you are well as can be.

  7. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Nat,
    Know what you mean.
    The coolness and change of colour in mum dying was different to that seen before.....an iciness...and different texture to the skin...and the blueness...it wasnt just a faint hue.

    Bruce...just wondered if it would be worth making the link a sticky....if not the ensuing posts.....i think it might be helpful for people if it is permanently around.

    Just an idea.
    Love Helen
  8. zonkjonk

    zonkjonk Registered User

    hey nat, my mum is similiar to your dad and has been for 6 months now...but I found this information very useful after my FIL was diagnosed with terminal lung cancer in april and died at home 11 days later surrounded by family.
    my SIL was with him when he died and had knowledge of this kind of thing....to the benefit of our family.

    I wish for mums sweet release everyday, oh how I hope this doesnt continue for years, but as mum is kind of young (72)and is losing weight despite adequate nutrition I expect that she will decline faster than normal
    she is borderline early onset.
    this disease is totally cruel, and for the families, their worst nightmare come true.
    I hope we are not going "check" in 3 years time.
  9. citybythesea

    citybythesea Registered User

    Mar 23, 2008
    coast of texas
    I think what we as an AD caregiver need to realize is that hospice is palliative care. The signs that hospice mention in their book are all too common to Alzheimers. In order to put them in perspective there needs to be a more substantial problem also....an example would be cancer or in moms case her bladder being with constant infections and the bleed into it that we have been watching of late.

    Hospice care is set up in the US tobe for patients that dr.s feel have maybe 6 months to live...but once again they know that each person is different. Our hospice has an AD patient who has been with them for 4 years. He will go way down then rally and thrive. Tho his thriving is not a life tobe envied.

    I posted this originally with this in mind:

    Mom has recently gone into hospice. The information on this link is very helpful if you feel that this may be the time. I don't recommend reading it unless you feel the end may be near. It can be quite easy or can be hard to read. Please don't read just the article that has been posted as there is much more info on this sight that is very useful to a caregiver. I hope it will help to bring peace to you as a caregiver.

    Personally for me I do not think it is appropriate to a patient who has AD, unless they are in the very late stages. Stage 7. Mom has been stage 7 for 3 months now and she went from 4 to 7 over night it seems. Thanks to a few strokes. Did I think hospice was approprate for her....not until a few weeks ago when her catheter bag filled with blood instead of urine.
    That comes and goes. Do I feel she will be with hospice long? For her sake I hope she at least sees the birth of her first grandbaby..I know she won't know what is going on, but I at least will have the comfort of a 4 generation pic (I know selfish of me.)

    I do feel however that there are other articles on the website that can give comfort to the caregiver of a AD patient. If you stop to think about it there comes a time in their life when you have to take over and in reality you are giving palliative care from that point. Maybe in bad health but will still live a long life and you know it you still want them comfortable.

    I think a few weeks (?) back there was a thread on dying of AD. It came to no conclusion but the point with this is that the patient has AD and eventually he/she may die. With a health problem you watch them die with AD they can still die a normal death but we say AD because they had AD. I Know this can be different cases also because some AD patients are young..but do you get my drift. This is all about a state of mind that has to be achieved to get the patient comfortable and if you are uncomfortable so is your AD patient.

    (Sorry I feel very strong about this.....and I promise I was not on 2 soap boxes, just one:eek:)

    I hope I have not offended anyone.

    I hope those of you who read this ahead of time will be able to understand me and I hope it will make it easier on you at that time.


  10. CYN

    CYN Registered User

    Jan 4, 2008
    east sussex

    I read something similar regarding the stages of death and when the time came i did find it a comfort to know what to expect when my husband passed away.

    Cynthia x x
  11. Tina

    Tina Registered User

    May 19, 2006

    I read this at a time when I was getting ready for the death of my beloved aunt and grandfather. I was up all hours googling, reading, looking for information on various (respectable) websites, and the one for which you provided the link did a lot for me, also in the aftermath of death, trying to comfort my uncle, and then about a year later, another uncle after the death of his wife.

    While I've not been able to look at the When Death Is Near section since, the parts on grief and bereavement have been very helpful.

    All the best,
  12. Katie Malarkey

    Katie Malarkey Registered User

    Mar 29, 2008
    Just to say thankyou for posting 'When death is near'... you'll see it gave me the info I needed, exactly when I needed it.
    Much love to you
    Katie xx
  13. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007

    I think many people will find this useful. The timescales I know can very as Mum went through the extremity cooling and discolouration, breathing pattern changes etc just a couple of hours before her death but the others were there for years beforehand. However my Dad, whose end came from cancer did show most of these in the last day of his life together.

    Dementia is a long bereavement.

    A book I found of much comfort this year, while Mum lingered on was "Final Gifts". It is written by a hospice nurse and described many of the situations mentioned and many of the unique things that can happen at this time. I would recommend it to anyone in those final days as it, despite its subject matter, a very comforting read.

    THinking of you all at this time

  14. lilacwarm

    lilacwarm Registered User

    Apr 5, 2008
    #14 lilacwarm, Nov 18, 2008
    Last edited: Nov 18, 2008
    I have read this thread tonight hope it brings others comfort
  15. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    sorry, Helen, it took me 6 months to see your suggestion :eek:

    I've made the thread sticky :)
  16. colin.pitman@ho

    colin.pitman@ho Registered User

    Aug 11, 2008
    chalfont st giles
    coping with uncertainty

    iaalleda found many of the comments helpful but i find the waiting and uncertainty difficult.twice my children have been calle.d to the home expecting the end i feel in a limbo
  17. CraigC

    CraigC Registered User

    Mar 21, 2003
    #17 CraigC, Nov 18, 2008
    Last edited: Jul 3, 2010
    Glad this has been made a sticky.

    When mum was close to death the lady from the hospice sent me a similar booklet, it was before we'd even discussed death. At the time I was in total denial and thought mum would recover as she had done before. Her loss of appetite was definitely the most worrying although she ate like a bird for the last six months anyway.

    I put the booklet in a drawer for a week and then one day opened it and read every word - it was just a few days before. The denial got a good bashing and although it was incredibly painful, reading the booklet helped me come to terms with things a little better, the penny dropped so to speak as there were just too many similarities. Nothing nothing prepares you when death is near in my opinion, but a little more information at least helps you come to terms with the practical things that you never expect.

    With children it is even more difficult, I confess to hiding my daughter from the last few days.

    In my opinion this is the most important part when death is near. I think mum was looking for me to let her go and yes almost permission. She needed to be alone for moments too and it was difficult to get the balance just right (this is perhaps different for someone with dementia, mum died from COPD).

    I'd really like to add one thing. It would have made a world of difference if someone had handed me the booklet with so many painful facts, instead of sticking it in the post. If I could sat and read it with someone close by and not alone it would have made a world of difference to me. We are all different, but I could have done with someone to talk to at the time. So some may find it easier to print it off and find the right time to read it or if you a people person like me, the right person to read it with and talk to.

    Kindest Regards
  18. cotswold melody

    cotswold melody Registered User

    Nov 26, 2008
    Thank you thank you thank you. This thread was exactly what I needed, exactly when I needed it. I am a carer on a one to one with a lovely lady who is nearing the end of her life (after reading this nearer than i thought!) Her husband is having problems coming to terms with the imminent loss of his wife (understandibly) and is insistant that she should eat/drink more. Today he took things into his own hands and encouraged her to 'drink more' and as a consequence she was sick. Had she been on her own she would have choked to death...It was my lunch time, luckily her daughter was there and acted very fast to help the lady. Now 'armed' with a print out of this leaflet I feel, hopefully, that the husband may be able to let her go at last. He is the last person to give 'permission'..I am sure that is what she is waiting for. So so sad.
  19. Libbie

    Libbie Registered User

    Dec 8, 2009
    I have just read the link at the top of this thread and it is very accurate. Having sat with many gentlemen and ladies through their dying process over 10 years of working at a nursing home for people with Dementia and Alzheimers' Disease, I have witnessed all these stages many times. Almost always the same pattern takes place, however the stages can vary in intensity, breathing can be louder or softer, discolouration can be darker and spread more over the dying person's body. In most cases the dying process is a peaceful one and an experience to be cherished and a privilege to be part of. When my dear Dad passed away in February this year after 15 years with Dementia, it was an honour to share his final moments on Earth. He seemed aware I was there and seemed to know when to let go although his consciousness seemed to have gone at that point. It's hard to explain but he knew when to go. Telling the dying person you love them and that it's alright to go is so important and does help the process for transition into the next World/Heaven. Nobody wants to think about their own passing, but it does help to know about the dying process and also it can help their loved ones cope when the time comes. Thank you for the link.
  20. Libbie

    Libbie Registered User

    Dec 8, 2009
    To add to the post above mine about offering fluids to someone who is dying - this is not good practice as the person could aspirate. Offering fluids (preferably thickened) at the beginning of the dying process is acceptable by syringe if the swallowing reflex remains intact. Where there is no swallowing reflex it is best to use mouth swabs to keep the mouth moist and fresh. Giving fluids when the person really can't accept them is more of a danger than a help at this stage and can cause extreme discomfort which the dying person might not be able to communicate effectively.

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