1. Stimpfig

    Stimpfig Registered User

    Oct 15, 2005
    135
    Germany/India
    #1 Stimpfig, Jan 13, 2006
    Last edited: Jan 14, 2006
    Hello

    I would shudder to think what would have happened to mum had I not been there. I also shudder to think what would happen to me if I were to be an AD patient in the future. I have no siblings and no children. I have a lot of good friends but mostly much older than I am. If I were to outlive my husband and my friends and have AD.... ? Would it matter ? Should it matter ?

    I usually cross the bridge when I come to it but what if I couldn't see the bridge or didn't know how to cross even? :eek:

    What can one do now for this eventuality ? I know some of you have talked about living wills and the like but as I said, for someone like me - no siblings or children, how does one go about such things ?

    (This part of my question has now been deleted on request. DEAR MODERATORS/TP MEMBERS : PLS ACCEPT MY SINCERE APOLOGIES. I DEEPLY REGRET HAVING RAISED THIS ISSUE HERE.).
    PS: The capital letters are meant to emphasize and not to 'shout' :)

    Sorry if I offended anyone with my question. I am otherwise an extremely optimistic and positive person :D but I have been asking myself this question for some time and just thought I will post it here for a discussion. I don't even know if this is the right place or may be it should be moved to the Tea room ?
     
  2. inmyname

    inmyname Guest

    Sue

    i believe you are totally correct in giving the matter serious thought and you probably have come to the same conclusion i have that no way would i want to consider the indignity of an existance in a care home or dependant on others

    That was precisely what my Mother always vehemently wanted for herself yet she neglected to sign a living will and now refuses to face the fact of her condition let alone the ability to do anything about it

    So its catch 22 and the dilema of the 21st century for so many forward thinkers especially those who see the suffering of their parents etc
    however right now there seems to be no legal way of acheiving it
     
  3. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    inmyname

    Maybe I take offence too easily, I am feeling not too emotionally strong at the moment, but the phrase "the indignity of an existence in a care home" is not the way I see my mother living. She is happy in her own reality in a care home living a life as full as possible with caring staff around her 24/7, and many visits from her family who love her very much.

    Sue

    As far as I am aware a person with no relatives can make a living will and instruct a friend or solicitor to deal with their day to day needs if they become ill, You could maybe arrange for an EPA at some point too nominating either a close friend or solicitor to act on your behalf.

    Lets hope it never comes to that though, but I agree it is worth thinking through options. The problem I have is when I think I have thought everything through and got it all worked out, something always happens to knock me off balance.
    Oh well that's life I suppose.

    Kathleen
     
  4. inmyname

    inmyname Guest

    I was not wishing to offend you in any way at all

    Merely expressing what i have spent 50 yrs being told

    My Mother has always considered it a total indignity to be in a care home and been extremely nasty about any friends who were in one ....almost the only thing she has ever expressed is a vehement refusal to live anywhere other than her own home

    Now she has AD and unless the Good Lord intervenes theres no way she will be able to live on her own

    If I force the issue I will get the blame and she can indeed be extremely vindictive
    so i am stuck

    The whole issue though simply strengthens my own resolve
     
  5. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    I must say my initial reaction was the same as Kathleen's. throughout my mum's illness we have done all that we possibly can to maintain her dignity. Her clothes are always clean, though the style has had to change because of difficulties dressing her. Her hair has been done. We have included her in all family activities. When embarrasiing moments have happened, and there have been some, I have simply explained to strangers that she suffers from dementia.
    I feel that we must do all that we can to remove the stigma from dementia, and nursing homes. The percentage of eldely people in society is increasing, and more people are going to suffer with dementia, society must change the way that it views mental illness.

    My mum is very ill, but she can still smile. I don't know what she perceives, but she does not appear to be unhappy. I couldn't choose to end her life. I do believe that her illness has brought a closeness in our family that may not have happened otherwise, though it has and continues to be emotionally challenging.

    Amy
     
  6. Michael E

    Michael E Registered User

    Apr 14, 2005
    618
    Male
    Ronda Spain
    I have been concerned about what would happen to Monique if I snuffed it - wondered what the kids would do to look after her - probably not much if anything.

    Recently though, I decided that one of the advantages of living in our western society is that in fact society would pick up the pieces - the pieces being Monique - the system would move in and look after her - not perfectly but she would not end up starving or whatever.

    Whilst we are around we can make life as good as we can for folks we are looking after but once we go 'toes up' then 'Society' will take the strain... seems not too bad to me.

    Life is full of difficulties and disappointments for all of us as well as lots of good times - do we sometimes try too hard to make the lives of AD suffers too good - that's not quite right - not sure of the words ... but I think possibly we can be too protective. ????
     
  7. inmyname

    inmyname Guest

    Michael

    You have spoken what many deem unthinkable

    "we try to make the lives of AD sufferers too good"

    can anyone tell me what would have happened to sufferers 50 or 100yrs ago
     
  8. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Nat's La-la land

    Then there's another way of approaching the disease. Its hard to keep this approach up but it can make the struggle meaningful in some way. Dad participated in any experimental medication that was being brought out, he participated in clinical trials, and he continues to hold out to this day, just in case there is a chance that someone might need someone at his stage for their research. He also wished for his brain to be donated to scientific research on his death, if it was wanted. This different approach is not selfless, of course each time we have participated in trials, we have hoped we might be finding the medication that can stop this disease, that might save Dad, but it helps answer that dreaded question, how can life have any meaning if this can happen to me/to a loved one?

    This tragedy will not be a complete horror, if in some small way, Dad has helped save future generations from the same fate, or at least helped science stave off the disease for longer. In this way, we kind of look at Dad like a soldier going off to fight for other potential dementia sufferers. We know it is likely he will die, we know he will face tremendous horrors in this battle and I can only hope that if I ever have to face the same fate, I can be as brave as he was/is.

    This might seem like a silly way to deal with a dreadful death sentence, and perhaps we are deluding ourselves. However, I can say that in the past 6 years, medication and research for dementias has progressed in leaps and bounds, and can only think that we should all thank those who have gone before our loved ones that made this progress possible. Hopefully if our own loved ones are defeated in this battle, their deaths won't be in vain but will instead help to save the people of the future, possibly our children.

    Looking at the situation in a colder more analytical way however, I'll let it be known that the thought of getting this disease horrifies me, I have thought, would I commit suicide but then thought is that better or worse for my husband to go through that kind of death or the slow dementia kind, especially if a cure was just around the corner? I have thought it would be easier to not have kids, because at least I don't have to worry about them, or worry about how they would feel if I decided to do myself in, or how they would cope with the years of caring involved. Like Michael has said, I am not overly concerned about if I should have this disease without family around, as society today (at least mine does) does care for such people to some extent.

    As for the question of what would have happened to these folks 50 years ago, as my ever so blunt husband would say, 'why ask the question, its not 50 years ago?'. I often struggle with the concept of caring for Dad to prolong his life for what? My first few paragraphs help me justify this and secondly as long as I believe he still wants to fight this battle, I will not make such decisions for him, he has a right to his battle if that is how he wants to do this, no matter how miserable he may seem to be. If one day he loses that fight, then I will still continue to 'care' for him, one day his body will give out, and then that will be the end.

    P.S. This is just how I feel at this point in time. I may change my mind when we reach a different stage, and Dad is being kept alive by machines, but until then....
     
  9. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    The lighter side

    If I do get early onset dementia, as soon as I walk out of the doctors office I am going to take up chain smoking cigarettes, like I so used to love to do. I will eat as much chocolate as I like, until I am sick of it and I will tell every nasty idiot I've ever dealt with exactly what I think of them and then get my family to apologise and blame it on my dementia. :p

    As you can probably tell, I've thought about this possibility a lot and whilst at the mercy of different moods! ;)
     
  10. 1234

    1234 Registered User

    Sep 21, 2005
    43
    bradford
    TP comes to life again

    Nat great to have you back on board, your posts really make me look at things differently
    Thanks Pam
     
  11. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Michael - "but I think possibly we can be too protective" - I interpet this differently. Isn't this because we sometimes just want them to be happy to make us feel more comfortable? When I'm trying hard to get a smile from Dad and there's no reaction I do sometimes have to stop myself and 'allow' him to be quiet.

    inmyname - "can anyone tell me what would have happened to sufferers 50 or 100yrs ago" - they would be in mental asylums and controlled with heavy sedatives. I think humanity has advanced a little since then.
     
  12. daughter

    daughter Registered User

    Mar 16, 2005
    824
    I have a real problem with the whole idea of living wills. The whole concept rests on an assumption that we will never change our minds.

    Our judgement about the quality of life that we deem as unacceptable now, might not be the same in the future. Timing is key.

    For instance, when we are very young, we consider 30 to be old. What happens if/when we get to 30? It certainly does not feel 'old'.

    We can look forward and picture ourselves having to endure the "indignity" of going into a home with horror. Will we necessarily still see this as an indignity if it happens? Even if we do, does that mean our lives are no longer valid?

    There would have to be so many stipulations as to when we consider this stage is reached. Are we going to stipulate we will have had enough when we are no longer mobile or able to take in fluids? Or will it be when we are incontinent? Or how about when we appear to have stopped caring about anything? Will it be when we are at the stage of having to enter a Home or when we are diagnosed? What about when we're grumpy or aggressive or not tidying our house? This is a frighteningly never-ending list that is also open to mis-interpretation by others.

    Anyway, these things do not necessarily happen all at once and, in AD at least, there are often times when lucidity re-appears even if only for a short time. Who can judge that it will never re-appear again? I can still see glimpses of my Dad, the way he was, and cannot say that will not happen up until the very end.

    The look of pleasure sometimes on my Dad's face when he is given a ginger biscuit with his cup of tea or the sense of contentment he must feel when we put on his warm big coat and he says "Jolly good". The love you can often see in his eyes for my Mum or when the corner of his mouth goes up as he smiles at a joke - aren't these moments still very valuable to him and not just to my Mum and I?

    And who is to say similar moments would not happen for him if Mum and I were not there to witnesss them?

    I believe we cannot make blanket assumptions about how we will feel or what we will want, especially if we were to be suffering from AD, and be certain this will not change.

    People do change their minds and where there's life there's hope (that last bit is just my opinion and I reserve the right to change it at some time in the future! :rolleyes: )
     
  13. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    But surely Hazel, a 'living will' can be changed by the testator, so long as they are still self-aware and of sound mind, just as a conventional will can & should be reviewed to allow for changed circumstances. It's not set in stone.
     
  14. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Lynne, yes, if they are self-aware and of sound mind, but I was just trying to say if they are not then I assume it will be carried out, even if (in lucid moments) that person has changed their mind and still finds some enjoyment in living.
     
  15. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Not being picky Amy, but with respect choosing to end someone else's life was not the subject suggested. It's all too easy for threads like this to veer off course and get into VERY dodgy territory.

    No offence meant
     
  16. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Michael; do you honestly believe this? Or are things SO different in France?
     
  17. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Lynne

    Knowing little about living wills I've just spent some time reading Internet articles. Thankyou.

    My post was in reponse to


     
  18. daughter

    daughter Registered User

    Mar 16, 2005
    824
    "you probably have come to the same conclusion i have that no way would i want to consider the indignity of an existance in a care home or dependant on others .."

    It was this statement that also prompted my reply. There seemed to be some suggestion that we could activate a Living will instead of entering a care home. I apologise if I upset anyone but perhaps I over reacted because I felt that I suddenly had to justify my Dad's existence! :eek:
     
  19. inmyname

    inmyname Guest

    Everyone has a different point of view on certain illnesses and the end result ......ie a care home .........my Mothers is extremely strong and I can see why

    She is entitled to her strong opinion just as i or anyone else is

    To many many people having to be treated like a baby or a small child again and loosing your independance in a secure care home when you are 89 is indeed a total indignity and they want none of it

    However to even discuss possible views on this on this forum is outlawed
     
  20. Michael E

    Michael E Registered User

    Apr 14, 2005
    618
    Male
    Ronda Spain
    I think things are pretty similar between the UK and France - What I was trying to express was that having thought about what happens to Monique if I snuff it first, I decided not to beat myself up about it....

    It will not be great for her but the system will move in and take over - she will not be left alone, starve in the streets, wander around in a daze till she's hit by a ..whatever.

    It would not be great or even very good but she would be cared for to some extent -

    Nothing much I can realistically do to change that, not a fate worse than death -

    There are many areas in this world where the repercussions of my mortality on Monique's life would be total disaster. Not bear thinking about but in much of Western Europe and a few other countries (USA???) Canada etc.. the state will provide some form of care.
    Or am I wrong??? Just what I think and have observed but I could be very wrong??

    Michael
     

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