1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    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. count2ten

    count2ten Registered User

    Dec 13, 2013
    186
    Anyone have any info about NG tube, mum due to have one with a magnet (?) attached that she can't pull out , has to be inserted by doctor because she pulled out the one the nurses tried to put in. I reminded them again that she has dementia and probably won't process this information fully, so they told me they will have to do a best interest decision - I know it's for her own good as she needs nutrition and of course I wouldn't object to anything that was going to help her but just wondering ........what was the point of the LPA she gave me? At what point were they going to consult her NOK/attorney about procedures and interventions.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,730
    Kent
    I suppose much depends on the stage of dementia a person is at whether or not artificial feeding is appropriate.

    My husband was at the end of his life, getting aspiration pneumonia and taking a succession of antibiotics which were non effective when NG tube feeding was suggested to me. I refused, believing it might prolong his life but would undoubtedly cause him further distress.
     
  3. 2jays

    2jays Registered User

    Jun 4, 2010
    11,490
    West Midlands
    Agree with Grannie G

    I pretty sure I would be against NG feeding for my mum if I had to make the decision.

    I know I've had to stand mums ground in the past, mentioning repeatedly that I have POA and am the best person who knows her wishes so that they MUST discuss things with me. Ok, so I was treated like an annoying busy body, but I was kept informed.


    Sent from my iPhone using Talking Point
     
  4. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,282
    SW London
    I would certainly not want it for my mother, and would argue vociferously against it if I had to, but then she is nearly 97 and has been at the advanced stage of AD for a few years. So I would hope nobody would try to insist, when I know it would be very distressing for her.
     
  5. Fred Flintstone

    Fred Flintstone Registered User

    Aug 28, 2014
    133
    S. E. England
    #5 Fred Flintstone, Jun 9, 2015
    Last edited: Jun 9, 2015
    There is a section in the Health and Welfare LPA where the donor may state whether s/he wishes to give his/her attorneys power to order the withholding of life-saving treatment (something like that - it may not sound so drastic).

    If your mother granted you that authority, I believe the doctors are legally bound to accept your instruction. Even if that particular section was not filled in you have considerable standing as Next of Kin and Attorney to be consulted, and have your understanding of your mother's wishes made clear to them.

    There is a tendency in an acute hospital setting for the default option to be to save life (or postpone death) at all costs. The father of a friend of mind had a diagnosis of terminal cancer, and he had been given about 3-4 months to live some weeks before he collapsed at home causing his wife to call an ambulance and to summon their daughter. The diagnosis was of pneumonia, and the doctors were all for setting up intravenous antibiotics.

    My friend and her mother were of the opinion that pneumonia was "The Old Man's Friend", and that "He's had a good life, it's better this way".

    More senor doctors were called and their wishes for him were respected. He passed away quietly in a deep sleep after 2-3 days. Afterwards the hospital consultant told them that he thought they had done the right thing and that was exactly what he would have wanted for himself.

    Had my friend's father been treated, he might have lived 2-5 weeks longer, all the time knowing he was dying, and perhaps with incomplete pain relief.

    These are circumstances quite unlike your mother's, but those closest to the old man I have referred to were confident they were acting according to his wishes.
     
  6. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    15,990
    Toronto, Canada
    My sister and I have discussed this and we have decided that we would not go to any extreme measures such as an NG tube or PEG feeding. It helped us a great deal that my mother had often said when she was well that if it came to it, she did not want to be kept alive by machines. I consider an NG tube and PEG feeding machines in that sense.
     
  7. count2ten

    count2ten Registered User

    Dec 13, 2013
    186
    #7 count2ten, Jun 9, 2015
    Last edited: Jun 9, 2015
    I never thought of it as artificial feeding and being kept alive by machines. What's wrong with me that I can't see the obvious anymore? Mum just had a massive stroke and very poorly, got pneumonia as well. Lost all movement on one side, very drowsy and weak, but they had her sitting out in a chair and was responding to the nurses when they spoke to her. I think she knew me when I visited, gave me a lopsided smile but unable to speak or swallow. They are giving IV fluids and antibiotics and other meds. Still got breathing problems and struggling to clear her airways. Their view is that she won't get better if she can't eat. I think they are genuinely trying to do their best for her. Maybe she has a chance to survive this stroke, I just don't know anything anymore., I have supported so many people through this during my career but can't see the wood for the trees at the moment, I always thought / hoped she would pass peacefully in her sleep and not have to go through all this indignity and discomfort.
     
  8. 2jays

    2jays Registered User

    Jun 4, 2010
    11,490
    West Midlands
    What wrong with you count2ten is that you have so much stress in your life, the fact your basic thinking to get through the day is working is amazing...

    Nothing wrong with you. xxx


    Sent from my iPhone using Talking Point
     
  9. count2ten

    count2ten Registered User

    Dec 13, 2013
    186
    Thank you 2jays , there's always someone on this site to put you back on your feet ...... also had some support and understanding from Mr Merlot tonight.
     
  10. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    There's not a thing wrong with you. You are tired and stressed and upset. I hope you are able to get some rest. You are doing the best you can and that is all anyone can ask. Thinking of you.
     
  11. count2ten

    count2ten Registered User

    Dec 13, 2013
    186
    Thanks Amy, and everyone else being so supportive. I seem to have two separate threads going at the moment and probably should have posted this here instead, so apologies for repeating myself. It's still early days and it's very difficult to know how much she is processing or understanding at the moment, and how much is down to the stroke, the dementia , her personality or just exhaustion. Probably a combination. Still on the rehab ward, so seems hopeful, but this NG tube situation has really got to me, I know it's just routine stuff and thousands of people have them inserted , and I know it's the only way they are going to get some nutrition into her but , knowing that she may not fully understand what's going on, I just hope they are gentle with her and explain exactly what they're doing and why. I keep thinking what she would do if she had to make this decision for herself, she would probably say yes , being very practical and sensible as she was, if it's necessary do whatever you have to do. I know there are lots of you out there coping with much more on your own but it would have been so good to have a sibling to share this responsibility with. It's been such a shock, on top of what has felt like a constant state of emergency for so long , being on call at all hours, unable to fully relax, have a day or an evening out without expecting the phone call or worrying if she was ok . I know I'm stating the obvious, you are all too well aware of the stretched-nerves syndrome. (Sorry, self pity is my only excuse to eat chocolate and drink wine.)
     
  12. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Count2ten, no worries if you have multiple threads running.

    Perhaps a vain hope, but do hope you got some rest/sleep/something last night.

    I do think it's one thing to know we will have to make decisions for others, and then another thing at the moment we have to make those decisions. All you can do is the best you can, and I am sure you are doing your best to make a good, conscientious decision, with the help of the medical staff. It is not easy, no matter the circumstances, and your circumstances are very challenging.

    Remember there are no prizes here on TP for who is coping with what without support. I know you what you mean; I often read stories here and think, I don't know how they do it, but that doesn't change the fact that we all have a lot to cope with, whether it's by ourselves or at home or whatever the case may be. You have quite enough to be getting on with.

    For what it's worth, I'm an only child, and I hear you on doing this alone.

    You don't need permission, but again, for what it's worth, please consider permission granted for all the wine and chocolate you need to get you through right now (although please don't make yourself ill). I don't think you sound like you're wallowing in self-pity. I think you sound like you are in a terribly difficult situation and are coping the best you can.

    We know it's hard.
     
  13. Isabella41

    Isabella41 Registered User

    Feb 20, 2012
    901
    Northern Ireland
    I'm of the opinion that NG feeding is artifically keeping someone alive as without it they would die. If this is done for someone as a temporary measure - say after an accident or such like then i've no problem however if it will only prolong the life of someone who is not going to get any better I struggle to see the benefit.
    Thankfully my aunt and I have had this conversation and her wishes are no articfical intervention should the question ever come up. She wants to be allowed to go when she is no longer able to eat and drink herself.
    I do really feel for you as its such a hard decision to make.
     
  14. count2ten

    count2ten Registered User

    Dec 13, 2013
    186
    Everyone keeps telling me it's still early days with her stroke so even though she can't eat or drink herself at the moment I'n hoping that maybe she will recover some of her independence. So I just have to go with the decision to insert the tube, if she will let them .. what happens if they can't, will they go for a peg feed?
     
  15. 2jays

    2jays Registered User

    Jun 4, 2010
    11,490
    West Midlands
    #15 2jays, Jun 10, 2015
    Last edited: Jun 10, 2015
    Take a step back

    Yeah I know, easy typed hard to do

    my thoughts, but Harsh words coming up

    from someone who sat with their mum 20/7 (I had to sleep sometimes) for almost 6 weeks when she was in intensive care, before she was diagnosed with dementia, with septic pneumonia, kidney failure, lung damage from the use of incubation tubes, tracheotomy care and was then was left alone to pick up the pieces from the messy emotional situation they were left to deal with - mum with dementia that she is rapidly declining from and daily loosing her dignity

    Close your eyes if you don't want to read this.... Sorry for my harsh words. I do have so much empathy for what you are having to deal with xx

    Your mum has dementia. She's not going to get better. What is the point of prolonging her life? What is the point of putting her through things that may be very painful and scary for her, and at the end of the day might not help her.

    Is the point to make sure she is pain free and has as decent death as she can in the circumstances?

    Hard oh so hard to make decisions like these. And only you can make them. You know what you want for your mum, sometimes we look at situations selfishly, mostly we look at situations to see what we can do as a benefit for the person we care for and sometimes we look at situations without seeing what's the best decision.

    These are my thoughts made from my perspective xx






    Sent from my iPhone using Talking Point
     
  16. Fred Flintstone

    Fred Flintstone Registered User

    Aug 28, 2014
    133
    S. E. England
    I have read 2jays recent post shown above.

    It makes for painful reading but is close to the thoughts I was having.

    Count2ten, I feel for you.
     
  17. 2jays

    2jays Registered User

    Jun 4, 2010
    11,490
    West Midlands
    Hoping you are as ok as you can be today count2ten.

    Thinking of you xxx


    Sent from my iPhone using Talking Point
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.