dementia - final stages

Discussion in 'ARCHIVE FORUM: Support discussions' started by mariak, Jan 29, 2006.

  1. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Oh Norman

    You sound so sad. I wish there was something I could say, but we cannot take away each others pain, just let one another know that we are standing alongside. If you were my dad I'd be giving you a big hug, so excuse the familiarity, but I'm sending one down the line now. (Don't know how to do the fancy animations though).
    With love
    Amy
     
  2. keyesport

    keyesport Registered User

    Jan 31, 2006
    1
    9 years caring for my mommy with Alzheimers Disease

    Well I have never done this before chatting online with anyone!! I felt the need I am personally depressed over this ordeal and feel like i should be able to do "something" my mommy has had the disease since late 1997 when I first read the books phampletst I said "Oh no my mommy is just forgetting she will always know me and never look in the mirror and not know herself etc etc well........she still knws me that is about it she still can read but doe snot know what she has a hard time hearing or so I think that is what it is...she don't put words together but you can figure out what she means I guess I am in total denial she lives with me and my husband and goes to day care. I am I guess just asking for "oh its Ok I know how you feel"........I am usually strong but lately I cry alot and feel sorry for myself....I will always take care of her till the day she dies but latley she is mean and I am not required to put her on Risperial to attend day care so she is not violent. I HATE DRUGS /she has no medical problems but ALzheimers

    Oh thanks for listening :) :) :)
     
  3. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya,
    Like you I had never chatted On Line till I found this site, now it seems natural. People here understand. There's no need to pretend. I think denial is a natural element, we deny it until we can deny it nolonger. It is good that your mum can go to Day Care, at least it gives you a break. We always said that we didn't want mum "drugged up", but there was a time when we had to give her something because if not dad would have cracked up. As her illness progressed she became more settled, and we were abe to stop the drug.
    Maybe you need to go and talk to someone about your own health; your family need you well. You must look after yourself.
     
  4. EDITH

    EDITH Registered User

    Jan 26, 2006
    24
    hI kEYESPORT,
    I felt a sadness for you as I read your message about being depressed over your ordeal, although I was most enlightened to read that you feel that you will always take care of your mother until the day she dies. I hope and pray that will be posssible for you because having nursed my mother for 16 years with this cruel didease, I thank God that he gave my sister and myself the strength and courage to care for our mother in her own home throughout this nightmare of an illness for so many years. I do reqalize and sympathise with those who are unable, for so many different reasons, to care for their loved ones and keep them at home. I do believe that the quality of life of an alzheimers patient can be so enhanced by being lovingly cared for by family, there is no better medicine, and believe me the rewards are just unbelievable, but dont misunderstand me, the heartache and pain is always there, the stresses are enormous as you travel the journey with you loved one, and the emotions we have gone through during the 16 years since my mother was diagnosed have been every emotion in the book. There is no way that you will not have these down moments when you actually despair but you can get through these times. Hang on in there and try to keep positive. And yes, your mum will always know you, particularly when she is being cared for daily by you. I know with the expression on my mothers face when I walk into a room that she still recognises me, even though almost every other sense has left her. I admit that she is unable to think, oh heres my daughter, but I do know that she knows I belong to her, and she belongs to me, and that I am the person that gives her all the love and comfort and care required. My mother is obviously in the final stages of the disease, and although it breaks my heart to admit it she is also in the final stages of her life and my only fear at this stage is that at 94 some bodily function will fail to operate and she will be taken into hospital to die. That would kill both myself and my sister after nursing her along every stage of her journey, so its fingers crossed that she will be sent to her maker from her loving home and not a hospital bed.

    Keep up the good work with your mum, the agression she is showing at the moment will probably pass as she moves into a different phase. There are so many different phases through this illness, it is quite astounding.We too are very much against drugs that help to subdue the behaviour, and this is one reason that we never wanted to put mother into care, I do realize that not all homes are alike, and it is not meant as a generalisation, but I do know without any shadow of a doubt, that many homes do manage alzheimers patients through drugs, and this is because there are not enough proper facilities, with properly trained staff in the managemnet of alzheimers sufferers, and therefore they are given drugs to sedate them and make them manageable. Our GP gave mother drugs to sedate her condition in the early stages, they simply zombified her and made her like a cabbage.We Preferred all the shouting and banging from her rather than becoming a zombie, and so we refused the drugs. Somewhere during the l6 years we were given a drug called hemeneverin, I think it is an old fashioned drug, but mother has over the years had 5 ml of the drug when she was so exhausted through constant talking, walking, shouting and fighting that it was eventually only kind to administer the drug for her own peace and comfort. We have never used the drug on a regular basis, but it has always been there should the need arise, and sometimes it has been a god send, particularly if the pateint like my mother, could go for days without sleep, and constantly talking, not words but noises and sqeeling. I am afraid I must apologise for going on, but I do want you to know that there is always some kind of help out there, if there is any I can ever give you, please do not hesitate to ask.
     
  5. EDITH

    EDITH Registered User

    Jan 26, 2006
    24
    Final Stages

    hi Bruce,
    I AM SURE YOU MEAN WELL, BUT I THINK IF YOU READ WHAT MARIA HAS TO SAY IT IS PROBABLY OBVIOUS THAT SHE DOES MEAN THE FINAL STAGES OF BOTH THE DISEASE AND HER MOTHERS LIFE, ALTHOUGH AS WE EXPERIENCED CARERS KNOW, IT IS NOT ALWAYS EASY TO TELL. I HAVE BEEN DOWN THE SAME ROAD WITH MY MOTHER MANY TIMES BUT SHE HAS ALWAYS BOUNCED BACK. I THINK HOVEVER THAT I TOO AM IN THE SAME POSITION AS MARIA RIGHT NOW, AFTER SUFFERING THE DISEASE FOR 16 YEARS I THINK MY DEARLY LOVED MUM IS IN THE FINAL STAGES OF HER LIFE, I SIT DAY AFTER DAY WITH MY MUM IN OUR FAMILY HOME WHERE MY MUM HAS LIVED ALL HER MARRIED LIFE AND ALTHOUGH SHE SLEEPS ALMOST DAY AND NIGHT I TALK TO HER CONSTANTLY, GIVE HER HUGS AND KISSES CONSTANTLY AND TELL HER A THOUSAND TIMES A DAY THAT I LOVE HER, AND ALTHOUGH I HAVE NOT BEEN GIVEN THE INFORMATION BY ANY MEDIC, I DO THINK HER LIFE AT THE AGE OF 94, IS COMING TO AN END, AND SOON SHE WILL BE AT PEACE, I AM HOWEVER UNSURE HOW I WILL COPE WITH THE ULTIMATE AFTER CARING CONSTANTLY FOR SO MANY YEARS, ONE CONSOLATION IS THAT MY FAMILY WILL HAVE ME BACK AS A FULL TIME WIFE, MOTHER AND GRANDMOTHER.
     
  6. EDITH

    EDITH Registered User

    Jan 26, 2006
    24
    final stages

    HI MARIA
    I HAVE BEEN FOLLOWING YOUR POSTINGS, AND SYMPATHISE WITH YOU TOTALLY AT THIS TIME AS I AM VERY MUCH IN THE SAME SITUATION. NO MEDIC HAS ACTAULLY SAID THAT MY MOTHER IS COMING TO THE END OF HER LIFE BUT I DO FEEL THAT SHE IS SO VERY FRAIL NOW AT THE AGE OF 94 AND HAVING HAD ALZHEIMERS FOR 16 YEARS I FEEL THAT IT IS UNLIKELY THAT THE IS EVER GOING TO IMPROVE IN HEALTH AND LIKE YOUR MUM I FEEL SHE IS TOO FRAIL TO FIGHT HER INFECTION.

    UNLIKE YOURSELF, I HAVE MY MUM AT HOME, MY SISTER AND I DECIDED TO TAKE ON THE CARE TOGETHER MANY YEARS AGO, AND FORTUNATELY OUR FAMILIES WERE VERY SUPPORTIVE IN OR DECISION AND WE HAVE MADE IT WORK. I KNOW IT IS NOT ALWAYS POSSIBLE TO TAKE ON THE CARING OF ALZHEIMERS PATIENTS IN THEIR OWN HOME, AND I CONSIDER I AM FORTUNATE TO HAVE BEEN ABLE TO DO SO, I CANT TELL YOU HOW I FEEL FOR FAMILY THAT HAVE, THROUGH NO FAULT OF THEIR OWN, NO ALTERNATIVE BUT TO HAVE OTHERS CARE FOR THEIR LOVED ONES, BUT YOU SOUND HAPPY WITH YOUR MUMS CARE, AND I THINK THAT IS A GREAT CONSOLATION. I SPEND MOST OF MY DAYS NOW SITTING HOLDING MUMS HAND, CHATTING, KISSISNG, HUGGING, TALKING AND LAUGHING A LOT. MUM HOLDS ME TIGHT LIKE SHE NEVER WANTS TO LET GO, BUT I KNOW SOMEDAY SOON, SADLY SHE WILL. DONT QUITE KNOW HOW I WILL COPE THEN!!!!!!
    ONE DAY AT A TIME MARIA, HOPE YOU FIND THE STRENGTH TO COME TO TERMS WITH THIS DISTRESSING SITUATION, I SHALL BE THINKING OF YOU, - THANK YOU FOR ENQUIRING ABOUT THE PIECE FROM "LET NOT YOUR HEART BE TROUBLED" I WAS SO PLEASED TO READ IT, IT IS BEAUTIFUL.

    KIND THOUGHTS AND REGARDS,
    EDITH
     
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Edith,
    thanks for your message
    it is not so much that I mean well, I was just clarifying the situation. At the point I came into the dialogue to post my reply, the situation was NOT clear from the messages posted. Hence my request for clarification.

    Many people read the threads posted on TP, many people also post messages.

    The points I make when I post are normally meant to be taken more generally than simply for the case I am replying to, since TP is a resource for so many.

    It is very easy to give a reply to what one believes to be the question, when one is simply mapping ones own experiences in, believing them to be the same as the original poster's experiences. That's why I asked for clarification so as not to do that.

    Every case of dementia tends to be a bit different from every other case, and there is also the stage of the dementia that needs to be considered, as well as the physical condition and age of the person.

    Last point is that the sheer quantity of posts on TP makes it impossible to follow all threads completely.......
     
  8. zan

    zan Registered User

    Jan 4, 2006
    96
    staffordshire
    Mariak, I went through the sad ordeal of watching my Mum die in November. She had a stroke that took her speech, swallowing and affected her right side, aprevious one affecting her left. She was semiconscious for about 5 weeks. Despite this I always knew that she was aware of us - she would open her eyes when we spoke, she smiled twice and once she tried to kiss me. Close to the end I knew that she was going but, like you , I think that she found it difficult to leave. My aunty told me that sometimes you have to give people 'permission' to go. On her last Saturday her conscious level was much lower and she didn't open her eyes. As I left the ward I gave her a kiss and said that if she wanted to go to sleep now it was Ok. We all loved her and we knew she loved us. I told her I would look after Dad. I left the ward but was called back half an hour later. Most of her brothers and sisters arrived and we sat around her bed for her last hour or so. After she died I had a few minutes alone with her. I asked her what it was like now. In my head I heard the single word 'lovely'. Some may disagree but I believe it was my Mum answering. Maybe you need to tell your Mum that it is Ok to move on, to take that ship out to the horizon. After her death , someone gave me that poem - it is very special. Thinking of you, Zan
     
  9. EDITH

    EDITH Registered User

    Jan 26, 2006
    24
    Final Stages

     
  10. EDITH

    EDITH Registered User

    Jan 26, 2006
    24
    Hello Zan,

    What a beautifully written sensative message for absolutely anyone facing the trauma of loosing a loved one. Thank you for sharing that with us, and I totally agree, that was your mum answering with that single word 'lovely'. I am very much in the same position with my own mum at the moment, and I shall take heed of your auntys advice when the time comes, as difficult as I shall find it to do so. Main thing Zan, your mum was dearly loved as is mine, and your mum left knowing this as will mine, and that is the most important thing of all.

    AGAIN, MANY THANKS,
    EDITH
     
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Thanks Nada

    Hi Edith,
    Blimey, I guess there is a first time for everything! Normally I am told to stop adding floral enhancements and get to the point! ;)

    In the case in point, I wanted to make the things I said very clear, and not open to misinterpretation. I also wanted to differentiate between final stages of dementia and final stages of physical well-being. These are very sore points for me, having a young wife with dementia, who is in the final stages of the dementia, but may be in that state for another 10-15 years, the gods forbid, for her sake.

    Blame my commercial background where we use PowerPoint for presentations and where points you want to make need to be concise and small in number.

    Blame also my background as a programming analyst!

    Finally, blame my wish to try and cover all possibilities.

    P.S. hand slapping not considered, even for a moment. :)
     
  12. EDITH

    EDITH Registered User

    Jan 26, 2006
    24
    Hi Nada,

    Thank You For Your Warm Welcome, Much Appreciated, Also For Your Kind Sensible Words.

    Regards

    Edith
     
  13. EDITH

    EDITH Registered User

    Jan 26, 2006
    24
    Hi Bruce,

    Tell you what, lets not blame anyone or anything eh, and lets forget about it, I totally understand where you are coming from, and I'm sorry if I misunderstood.

    I am sorry to hear that you have a young wife with AD,our situations are vastly different as my mother is now 94. Reflecting on what our postings were initially regarding - final stages- Can I ask, simply out of curiosity how you know that your wife is in the final stages of the disease, no one has ever informed me of my mothers stage, although I do not feel I actually need to be told, at 94 years of age and having been diagnosed for l6 years, as much as it greives me to say it,I know mother is in the final stages of the disease, and of her life. Obviously it must be a doctor or consultant that gives this information, or perhaps psychiatric nurse? Our GP dosent appear to have any clue whatsoever about alzheimer's disease, and the mental hospital that mother takes a weeks respite occasionally do not seem to give any indication as to the stage mother is at. Perhaps this is because we never ask. I do also have a sister of 69 who was diagnosed with the disease two years ago, her illness simply escalated out of all proportion so very quickly, and she became almost cabbagelike, almost immediately. Incredibly sad, I cannot see her surviving anything like the l6 years mum has survived, but in her condition neither would I wish her to. Mums situation was so different having two daughters to care for her 24/7, her quality of life was much improved through having us care for her in her own home and almost carrying out a normal life, when we went visiting, she visited with us. When we went shopping she shopped with us, when we went on picnics, mum came along too. Her grandchildren treat her absolutely normal because they have been brought up with great grandma being great grandma, and they think every family has one of these funny sort of grans that they adore and love to bits, even though there are times when she becomes incredibly cross, they have no fear. It has only been these past three or four months that mothers mobility has become such that it is not now quite so easy to enjoy the normality she has enjoyed for such a long time. My sister and I have to come to terms with it being wind down time now, and with great difficulty we are trying to prepare ourslves for the inevitable.

    Regards,Edith.
     
  14. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Edith,
    You are so fortunate that your mother did not start to suffer with this illness until she was 78.
    Amy
     
  15. EDITH

    EDITH Registered User

    Jan 26, 2006
    24
    Hi Amy,

    Which goes to prove that in our depths of despond we all have something to feel fortunate for and yes for me it could be that I had my mother much longer than many, and because she was possibly older than some when she was diagnosed, her condition has probably been slower reaching the final stages than if she had been younger when she started with the disease. And my father had her for a longer time too, he was 94 when he died 10 years ago so they enjoyed a gloriously long retirement before he died, again it is something to be thankful for. The sad part was that he could not cope with mothers illness because he was so old, he simply couldn't understand what was happening to her, and certainly couldn't accept that he was loosing his soul mate, He died of a broken heart. M y sister too was less fortunate than mother, she was diagnosed at the age of 67, and the illness escalated so quickly, she is virtually a cabbage at 69 and it is so verysad, she certainly has not had the quality of life that mother has been able to maintain throughout her illness. What age was your parent when diagnosed.
    Thank you for your posting, hope to be in contact with you in the near future.
    Regards
    Edith
     
  16. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Edith
    I have reviewed the 7 stage version of the stages of dementia, and Jan fits the final stage in terms of her condition. Her GP at her care home agrees Jan's dementia is that far advanced - I asked her explicitly. The GP also says that Jan may live another 10 years, or even more.

    This is why I originally made that differentiation of 'end of dementia' and 'end of life', because they can be very different.

    Dementia is not put as a cause of death on death certificates - it should be reflected there in some way, a lot of us believe.

    Clinically, it is generally something else that takes dementia patients from us - breakdown of the immune system, pneumonia, virus, heart failure. But dementia itself - as far as I understand - does not actually terminate life - that is done, as it were, by proxy, by the dementia causing a body organ to fail.

    GPs in my experience have very little knowledge of dementia unless a family member has had it. Likewise nurses who are not specialising in the area. Likewise just about everyone else in the world who has not had direct involvement. "It's just getting a bit of short term memory loss, isn't it?" seems to be the way they think.

    That's why TP is so unique. It is a sharing of experiences by those who know, through experience of effect on the life of a loved one. Not all experiences are the same, hence some confusions at times. :confused:
     
  17. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Edith
    there is a very good fact sheet which goes some way to explaining the later stages of Dementia
    http://www.alzheimers.org.uk/Facts_about_dementia/How_dementia_progresses/info_later.htm.
    Every case is is different,I have cared for my wife now for 7/8 years and still things vary at times.
    I do not believe that anyone including consultants can give an answer as to the stage a patient is at but I do believe that those sharing a loving bond with a partner/wife/husband can have a very good idea of what stage their loved one is at.
    My humble opinion from a husbands point of view.
    Norman

    Edith you share my wife's birthday January 9th.
     
  18. EDITH

    EDITH Registered User

    Jan 26, 2006
    24
    Hello Bruce,

    I am of the same understanding as you regarding dementia itself not actually terminating life.

    I do find it very frustrating and rather sad that medics have very little knowlege of dementia, in fact I am of the opinion that family of patients are the people that become quite expert over the years in understanding and dealing with the consequences of the illness. I certainly feel that you have had to experience the illness in someone close to have any understanding at all. Friends often ask me different questions about my mother and how AD affects her and has affected her over the years. I find great difficulty in making them understand,people unaffected by the disease simply do not have a clue. I am pleased to have discovered this site because it's good to talk to people who share your views, frustrations and sadness. It is interesting to hear how AD affects patients differently and how families try to deal with their, guilt, disappointment, frustrations and sorrow.

    Regards
    Edith
     
  19. EDITH

    EDITH Registered User

    Jan 26, 2006
    24
    Hello Norman,

    I haven't had the pleasure of speaking to you before but I have read many of your excellent postings.

    Thank you so much for the information, I have looked at the fact sheet and from what I read, my mother who is 16 years into alzheimers must have been in the latter stages for at least 10 years. We have been extremely lucky though that she has never become incontinent which I think is marvellous at this stage. I do think having one to one care 24 hours a day does have a lot to do with that though, we seem to just know when she needs the loo, little mannerisms and such, perhaps if she was in care she would easily be classed as incontinent. I remember when my dad was in a care home for a very short while, he asked for the loo one day and I went to ask the staff who were taking a coffee break, for assistance to the loo. The matron - THE MATRON, I ask you said "oh don't worry he 's alright, he is padded up". I will not tell you how I reacted to that. In fact I will, I got on the phone to Social Services who had insisted dad went into a home after a spell in hospital following a broken hip, and I insisted they got my dad home without further delay. They were of the opinion we simply could not cope looking after dad and mum. Well we showed them, and six months down the line the social worker responsible for putting him in that place actually apologised and admitted that she would never again enforce that upon any family without putting the caring situation at home to trial first. Sorry I have diverted a little there haven't I. Regarding the stage situation that this was initially regarding, I think, what you describe as your humble opinion, which I am sure it is anything but humble, is quite right. I am sure that if you are travelling this journey with a loved one, you have a rough idea of what stage you are at or at least the patient is at. It greives me to have to say it,but sadly my darling mum is, I know, very close to the end of her journey through this cruel disease. It is somewhat brave of me to actually say that because although it should be a kindness to both carer and patient, I can't quite see it that way. The phrase I most hate to hear in the whole wide world is "It's a blessing" To loose ones mum, under whatever circumstances, could never in my opinion be regarded as "a blessing".

    Once again, many thanks for the information. I have seen several postings where you have recommended facts sheets, good on yer.

    Kind regards,
    Edith.

    Fancy your wife and I having the same birthday. She must indeed be a very special lady!!!
     
  20. I am very confused (having not been there before) with the "advanced" stages of Alzheimers.

    I wonder if anyone can help.

    My father, a sufferer as I have said in other threads for over 5 years, but perhaps with dementia before, now takes to talking to another imaginary gentleman in the mirror of my parent's dining room, in the mirrors of Marks & Spencer - anywhere there is a reflection...

    He obviously sees himself but does not recognise it is him. Is this an advanced stage?
     

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