Swallowing problems - what comes next

Discussion in 'ARCHIVE FORUM: Support discussions' started by keen2108, Jun 26, 2006.

  1. keen2108

    keen2108 Registered User

    May 24, 2006
    I have been told today that my dad is having problems swallowing and that his condition seems to be deteriorating rapidly. The doctor rang from his nursing home to say that he is now in bed. They said to prepare for things to happen rapidly.

    Anybody know what I can expect now. How long is rapid - days or weeks??
  2. Lynne

    Lynne Registered User

    Jun 3, 2005
    Hi Keen

    From accounts of similar cases I have read about on here, weeks I think. But of course, it depends how strong your Dad is physically at this point. If he has already lost a lot of weight & condition, he may not have much in the way of reserves to draw on once his food intake drops.

    My sympathies at this awful time. Try to accept that your ordeal (and his) may be coming to an end, and it's time to let go now nothing further can be done.
  3. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex

    My Mum has had this same problem on and off for the last 6 months or so, we think she has stopped swallowing, then she starts again, but others stop and slip away fairly quickly.

    Mum has stopped again over the last couple of days, but has not yet been kept in bed, we have to again wait, watch and hope for the best for her.

    It seems another cruel part of this awful disease, no rules, no timescale, all of which drains everyone nvolved.

    All I can do is wish you all well and hope, for all your sakes, that your Dad is comfortable and nature takes its course as gently as possible.

    Thinking of you

  4. strawberrywhip

    strawberrywhip Registered User

    Jun 26, 2006
    swallowing problems

    hello there ..I work on a medical ward, and our SALT team (speech and language therpists) often see elderly patients who have swallowing problems from time to time. If it is not related to a stroke, it is often to do with muscle tone ..their explanation was that if an eldelry patients was weak, possible had a por dietary intake, then like any other muscular effort (walking etc) swallowing would alse be affected. It is connected to their overall weakened state.
    As you probably know nutrition can be administered by many different methods ..Naso gastric feeding, intravenous etc etc. However I do feel that there comes a point when the patient and the family just don`t want too much intervention and the most important thing is symptom control ..good mouth care , and to keep them as confortable and peaceful as possible with close family around them and to accept that they are moving into a palliative care mode. ..rather than whipping them into an acute hospital and strange frightening surroundings.
    Because the technology is available sometimes people seem to think they must do everything possible, and sometimes it pays to take a step back ..consider what your relative would want. It is very distressing to see patients rushed in from nursing homes very poorly,and they end their days with us, rather than peacfully in their own rooms with family around them. I would certainly choose the gentle methods for my own parents having seen both sides of the coin.
    Best wishes to you alll
  5. Sandy

    Sandy Registered User

    Mar 23, 2005
    Hi keen2108,

    There is a lot of sense in strawberrywhip's comments. As Kathleen has said, this could just be a temporary set-back or the begining of something more serious.

    Just in case it is the begining of something more serious, it might be worth taking a look at the Alzheimer's Society's position on palliative care:


    Take care,

  6. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Keen,
    Sorry to hear about your dad. Did the doctor say whether he is able to swallow fluids. If he is not taking in any fluids then it could be days, rather than weeks.
    Maybe you need to phone the GP tomorrow, or the NH and ask if they could be clearer about what they meant.
    Thinking of you. Love,
  7. Libby

    Libby Registered User

    May 20, 2006
    North East
    Hi Keen

    Sorry - nothing to add - just wanted to say that I was saddened to hear that your dad is not at all well.

    Thinking of you

  8. alex

    alex Registered User

    Apr 10, 2006
    Hi Keen

    Everyone is different, my partner died three days after losing his swallowing reflex even though he was on an i.v. drip, but he had been very ill for a long time, doctors said it was more than likely the result of a stroke.

    Sorry to hear your bad news, i do know how your feeling as its still fresh in my mind (its only two weeks since my partner died).

    My only advice would be to make the most of whatever time you have left, whether thats days or weeks, as you will gain comfort from it later.

    Sending you a big ((HUG))
  9. keen2108

    keen2108 Registered User

    May 24, 2006
    Thank you for all your replies. The problem I have regarding visiting is that I live a couple of hours away from the nursing home and have a one year old daugher. Add to this the fact that I am the only next of kin then I feel really guilty about not being able to get there very much. My parents had a big age gap so I'm only in my 30's when dad is 80.

    My mum is sometimes available but my parents divorced nearly 30 years ago so my mum can babysit with notice but still works fulltime and lives an hour away.

    The nursing home environment is very nice but I can't really take a crawling baby to visit in these circumstances.

    I am going this Thursday t visit but I have been warned that he can't converse much. The doctor asked me what they want me to do because they think he may get a chest infection because of the swallowing problem and therefore pneumonia can happen. They said they can treat with antibiotics but it will just be delaying the end because other problems will occur. An awful decision but as my dad attempted suicide last year I think I know what he would have wanted. To go as peacefully as possible.
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    this can be the normal progression and I have already recorded that I want no intervention - other than to stop any distress or pain - should this happen to my wife.
  11. mel

    mel Registered User

    Apr 30, 2006
    hello Keen
    Please don't feel guilty about not being able to visit your dad as often as you'd like....he would understand.
    It's a very heavy burden to bear when making decisions about treatment and I think you've answered your own question....do what you think is right for your dad.....
  12. Lila13

    Lila13 Registered User

    Feb 24, 2006
    But Mother Nature used to let lots of people die who can now be saved. Many of us wouldn't have survived without medical intervention at various stages. Probably in a more "natural" society many old people were left to starve, or put out in the snow.

  13. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    I am sure your Dad would expect you to put his grandchild first and foremost. You cannot do everything and it seems you are give a lot of love and care to your Dad. |My thoughts are with you at this very difficult time. Unfortunately it brings home to us that we all have this sort of period to go through and it seems that only people on TP have the true experience to give comfort and advice.

    Take care and best wishes Beckyjan
  14. keen2108

    keen2108 Registered User

    May 24, 2006
    Well I went to visit dad on Thursday and he looked awful. He is sleeping most of the time and cannot communicate at all. He isn't eating anything and is having a tiny amount of fluid. They said they thought he wouldn't make it through the night or perhaps only to Friday. It's now Sunday and he is comfortable but nothing has changed.

    I noticed he stopped breathing for quite a long time and I thought the worst but then he would twitch and start breathing again.

    This waiting game is horrible as you don't feel you can get on with things as you are waiting for the phone to ring. You feel guilty if you go to the shop in case they ring with news.

    Thanks for all your kind words and support.

  15. Margarita

    Margarita Registered User

    Feb 17, 2006

    Why not get a cheap mobile they do them now for £24 pounds Just a thought.

    I do feel for you as what is happen to you was happening to me with my mother sister over xmas just gone . I was the only next of kin. My thoughts our with you
  16. keen2108

    keen2108 Registered User

    May 24, 2006
    I was prepared for something to happen at the end of last week. Well as prepared as you can be. Now the days are passing I feel awful that I said no intervention. He must be so hungry and thirsty. I feel I am making him suffer. I know he wouldn't want to go to hospital and the nursing home can't put him on a drip without him going to hospital.

    I wish this was over for him - I hope that doesn't sound awful.
  17. Margarita

    Margarita Registered User

    Feb 17, 2006
    #17 Margarita, Jul 3, 2006
    Last edited: Jul 3, 2006
    No it does not sound awful and I hope you don’t mind me sharing this, but I felt relief when my untie pass away as it went on for weeks all I could do was hold her hand & think of the happy memories we share when I was younger , about your dad when you say he must be so hungry and thirsty try not to think like that , its his wishes your respecting .

    My untie was at hospital they gave her morphine to help her along the way to her passing as they stop feeding her and giving her water the morphine Because she had a stroke also Diabetic so could have been in other pain I read that when your body go in to salvation that you don’t feel anything .

    who know which way is the right way to do it ,its all a living hell when your living in it . just keep telling yourself your doing the right thing for your dad and that is all that matter .
  18. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Keen,
    As you said, dad is sleeping most of the time. His body will be closing down and his drive to eat will be gone, so he will not be hungry. By taking a small amount of fluid, he will be keeping his mouth feeling fresher and comfortable, and no doubt the Nursing staff are keeping him as comfortable as possible. Hang in there Keen; there is nothing at all wrong with wanting this to be over. Thinking of you.
  19. Grand daughter

    Grand daughter Registered User

    Jun 29, 2006
    Hampshire, UK
    I'm so sorry, it's such a hard time for you. Try not to feel guilty, you are doing all you can.

    My grandad can't swallow much at the moment either, sometimes we can get 100ml of fluid down him but sometimes he chokes and it's awful - or he just spits it out - he's stopped eating too. But this has happened before, you prepare yourself for the worst and they cling on in there! They are stronger than you think sometimes.

    My thoughts are with you x

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