1. Rosie

    Rosie Registered User

    Jun 10, 2004
    235
    South East Wales, UK.
    Hi everyone,
    Havent posted for a while but I'd like to talk to you about my Dad. My mam has AD, she is now 68 & was diagnosed when she was just 60. Over the years are getting worse but I feel at the moment she has reached a plateau. She has difficulty swallowing most days , I can sometimes encorage her to eat ( pureed food ) sometimes. She is in long term care & my Dad feels that we are "forcing " mam to eat. Because most of the time the only thing she seems to eat & enjoy is sweet things. So my Dad in his wisdom has made an appointment to see the Consultant at the unit where mam is, because he has bought a book on his rights as the next of kin, and feels that the Dr & Nurses are keepng my mother alive by practically forcing her to eat, which he feels is inhumane.
    He is meeting the Consultant to see if the Doctor himself has any religious views that prevent him from withdrawing food & fluids to my mam. He is going to ask if he could have a second opinion frm another Doctor to see if his views would be any different. I know what he wants, he wants to end my mams suffering, but I think until my mother is unable to swallow & the only way to make her comfortable is through sub cut flluids we as a "family" should leave the decisions to the medical staff. I would appreciate some opinions please.
    Thanks Rosie x
     
  2. Natashalou

    Natashalou Registered User

    Mar 22, 2007
    426
    london
    sorry

    so sorry to hear of this awful situation for you all. however surely witholding food and fluids amounts to starving someone to death? Yes, it MAY end their suffering, but how is the suffering during this process alleviated? Are people sedated?
    I dont have a religious view, but have to say IMHO this really sounds moraly wrong. however I am not as yet in this situation.
    Take Care.
     
  3. Rosie

    Rosie Registered User

    Jun 10, 2004
    235
    South East Wales, UK.
    Thanks for your reply. I as a person feel the same way about withdrawing food. I know most days my mam struggles to swallow and when I try to get her to eat a small amount sometimes she struggles and coughs, and goe's quite red in the face & I think to myself, why am I doing this??? When I see how much distress it causes her, the last thing I want is to cause my mam distress & god forbid actually end up choking her! But I feel so cruel when I'm trying my best to get her to eat something. Am I doing the right thing??
    Rosie x
     
  4. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,419
    I assume from what you say your mother is taking food and liquids only by mouth? That is, she's not being fed by a PEG? In that case I very much doubt that your father will have any success in his quest, although I do understand why he's doing it. They will not refuse to continue to offer food, even if she has difficulty swallowing. Can she swallow liquids, thickened or otherwise? If so she should be recieving most of her nutrition via liquid foods.

    I realise that this is probably going to continue to be an issue for your family even when the doctors refuse your father's request, as I am 99% sure they will do. What you do need to think about is what happens when she stops swallowing altogether. Do you let them insert a PEG, or rather when your father refuses to allow them to insert a PEG as it seems likely he will do, can you come to terms with that decision?

    Jennifer
     
  5. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello Rosie

    This is such a difficult issue.

    When my lovely jolly Dad suffered a stroke and could only move his eyes, was blind and had no swallow reflex. for the last two weeks of his life, the doctor tried feeding by nasal gastric tube, but the food kept coming back up.

    The tube was removed and he was kept on IV fluids for a few days, but was in a dreadful state, howling and so very frightened that we asked for the fluids to be stopped and to let his suffering end............there was never a chance of him recovering.

    This was two and a half years ago and I can still remember that awful sound and the fear in his eyes. Dad died 4 days later, he had probably had another stroke. We spent the last few days telling him it was alright to let go....our minds screaming for him to get better.

    I would never ever want another human being to go through that suffering.

    However, even with this experience, I would say that as long as your Mum is comfortable and calm, if she seems to enjoy the sweet foods she takes sometimes, then still offer them, she will probably stop when her body has had enough.

    Fluids are a different matter though, it must be awful to be extremely thirsty and have no means of stopping the thirst............I still have a niggling feeling that Dad must have been so desperate for cup of tea.

    The decision will be your Dad's and whatever he decides it will be a very difficult time for him, so please give him all your love and support to help him through whatever lies ahead.

    Thinking of you all

    Kathleen
     
  6. Rosie

    Rosie Registered User

    Jun 10, 2004
    235
    South East Wales, UK.
    Thanks for your replies x I try to suport Dad as much as possible and I would not agree either if they suggested peg feeding! No way! My mam has been through enough with this terrible illness! But I will continue to encourage small amounts of food & hopefully mam is still getting some nutriton from what she is able to eat . Thanks guys x
     
  7. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    15,990
    Toronto, Canada
    Rosie,
    You are in a very difficult situation now. It may easily happen that your mother will aspirate food & develop pneumonia. This is very common in the later stages of Alzheimer's.

    But my opinion is that while she can still swallow and seems to want to continue eating, I would continue. When she refuses, that's an entirely different issue.

    I have read in several different reputable places that at the very end, when the body starts to shut down, there is no real thirst and it may actually cause more distress to keep the person on IV fluids. However, it sounds like you are a while from that.

    I think your father is at the end of his emotional rope and is trying to deal in the best way he can. He needs your love and sympathy. I think he will be refused by the doctors. Do remember though, it should be the family's decision, not the doctors.

    Love
    Joanne
     
  8. Rosie

    Rosie Registered User

    Jun 10, 2004
    235
    South East Wales, UK.
    My mam several years ago developed a terrible chest infection and a lot of the older frail patients passed away, we were told to expect the worst, meaning my mam would not pull through & I sat by her bedside praying for it to end, but she pulled through, even the staff were suprised she survived, and said she must be a strong lady. Before the illness , she was a hard worker & was always as busy as a bee, so maybe the way her lifestyle was before has helped. But my Dad just wants the suffering to end and I understand that but " he" cannot decide that the best way would be by withdrawing food, I have spoken to him over & over and explained that when I visit and I encorage mam to eat I'm not always succesfull but she does swallow the food eventually, its a long slow process but I feel that if she is still able to do this no-one can make the decision to stop food.....
     
  9. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland

    I agree with you, Rosie. As long as your mum is able to take food, however slowly, the doctors will not agree to withdrawing it.

    When she is unable to take food by mouth, they will suggest a PEG, and then you have the right to refuse. You have said you will refuse, and again I agree with you.

    My mum refused food after a stroke, and they wanted to put a PEG in. I refused.

    My view is that as long as your mum is taking food willingly, she is hanging on to life. Once she refuses, as there is no prospect of improving the quality of life, prolonging the suffering would be wrong.

    Just my view. One I followed with my mum, and I hope my family will follow with me.

    Take care, Rosie. I know how hard it is to cope with this situation.

    Love,
     
  10. Rosie

    Rosie Registered User

    Jun 10, 2004
    235
    South East Wales, UK.
    Thanks Hazel xx
     
  11. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,419
    Something has occurred to me Rosie. I may well be wrong but is it possible that this is your father's way of ensuring that YOU don't feed her? You say you've had many discussions about it, and that you both feel differently about the issue. I wonder if your father asking them to stop feeding your mother has as much to do with his unwillingness to have a major argument with you over it, rather than a feeling that she simply shouldn't be fed. I can see if I was in a similar situation as your father, it would be so much easier if "the doctor" said she shouldn't be fed, rather than have an argument with my child about the wisdom of feeding its parent. I'm not saying that either of you are totally wrong, or conversely that either of you are totally correct. The problem is, once this disease has run its course in your mother, the pair of you are going to need to continue to have a relationship, and this has real potential to form an impenetrable barrier between you.

    I think if I was in your position, I would think very carefully about the line between coaxing someone to eat, and forcing them to eat. Don't get me wrong, I'm not saying that you're doing the latter (although it may appear that way to your father), simply pointing out that there can be fine line between the two. Culturally, I think often we think care=food, and there's no doubt that feeding someone gives us something to do, makes us feel as if we're making a difference, when we visit. However, if an entire visit is taken up attempting to get her to eat a mouthful of food, perhaps there needs to be some balance?

    Another thought is perhaps if you choose to continue to attempt to feed her, and your father finds it distressing, that you should do it when he's not there.

    Some or all of these points may not be relevant to your situation. Make of them what you will.

    Love
    Jennifer
     
  12. Rosie

    Rosie Registered User

    Jun 10, 2004
    235
    South East Wales, UK.
    I never visit with my Dad, very rarely because I like to spend time with my mam and play records she likes to listen to, comb her hair, cut her nails, massage cream into her skin. The only time my father visits is to take my mams washed clothes there. He always asks how was my mam when I visit and I always answer honestly, if she has taken food reasonably well I tell him. My father just wants it all to end & I think he thinks by withdrawing food would be a easier & quicker way! I dont agree!
    Rosie
     
  13. Rosie

    Rosie Registered User

    Jun 10, 2004
    235
    South East Wales, UK.
    I'm sorry if I sound a bit angry but I get days, as I shoud imagine we all do! I know my mams suffering and I would never in a million years want her to suffer more than she has already done but I just don't agree with my father, I'm not sure what he's trying to do!
     
  14. Rosie

    Rosie Registered User

    Jun 10, 2004
    235
    South East Wales, UK.
    He told me today that he has spoken to a "nurse" on the ward, and this nurse has told him that my mams losing weight rapidly and she is only eating "sweet foods" and so is not getting the nutrition she needs but I'd like to say my mams skin is intact, and she has no pressure sores! So what does that say??
    Rosie x
     
  15. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Rosie, love, you've every reason to be angry. You want to do everything you can for your mum, and that's natural.

    Don't worry about being angry, just post whatever you feel. We'll support you.

    Love,
     
  16. Rosie

    Rosie Registered User

    Jun 10, 2004
    235
    South East Wales, UK.
    Thank you all. Rosie xx
     
  17. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Rosie, my heart goes out to you and your dad. You are both trying to do what you feel is right.

    It is sad that you do not see eye to eye on the subject of feeding (whatever the right and wrong of the situation).

    Try not to judge dad. He is coping in his way, as you try to cope in yours.
    I do hope all of you, especially mum, gets some peace from this intolerable desease soon. Your mum would be so proud of you.
     
  18. Rosie

    Rosie Registered User

    Jun 10, 2004
    235
    South East Wales, UK.
    Thanks Connie, we're all trying to get by & cope in our own way, thanks for your words. Rosie xx
     
  19. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,732
    Kent
    Dear Rosie, you sound stronger than your father, if you don`t mind me saying so.

    It seems you are still fighting to help your mother as much as you can, while your father has witnessed enough and is unable to take any more.

    I don`t know the answer, there probably isn`t one, but she is your mother as well as the wife of your father and I believe you have as much right to continue to care for her, as your father has to have his views.

    I do hope you can both reach an agreement.

    Take care, love
     
  20. Helena

    Helena Registered User

    May 24, 2006
    715
    Rosie

    My Mother refused food
    The nurses tried to cajole her
    she refused meds
    they tried to hide them in yoghurts etc
    she took them out
    it was her way of saying enough is enough
    My sister and I respected her decision as did the doctors
    C Diff made the final decision
     

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