1. sharon128

    sharon128 Registered User

    Jul 15, 2007
    Hi everyone,
    my mum has been getting worse over the last few months she choked in january and was advised by the salt team (swallowing team) to have a pureed diet and thicken liquids, she was addmitted last sunday with a chest infection and a very high bm(blood sugar),she was discharged on weds evening back to the care home and on friday she choked and had a cardiac arrest,the doctors took us into a small room and told us the next twenty four hours where critical, and she's not for resusitation. She has pheumonia now because some of the food went into her lungs, today my dad and i asked if she could have a peg(a tube in her stomach)but unfortunatly she's not suitable has her alzheimers has progressed to far so now we are faced with her choking to death not a peaceful but a traumatic death when it happens this could be anytime. It's so sad what a horrible way to die. Yes i know that being diagnosed with alzheimers is a progressive disease but why can't it be peaceful not traumatic my poor mum is suffering enough.
  2. 2jays

    2jays Registered User

    Jun 4, 2010
    West Midlands
    So sorry to hear your news. ((HUG)). My thoughts will be with you
  3. CaPattinson

    CaPattinson Registered User

    May 19, 2010
    West Yorks
    hi everyone

    Dear sharon i remember replying to you when you said your mum was pocketing food. What you are telling us now is beyond comprehension - I am so very sad, but I have no words of comfort. Every avenue will have been explored I expect. I am so very very sorry that it has come to this. my thoughts are with you, Sharon. I hope you can be strong. God bless. xxx Chris
  4. Jo1958

    Jo1958 Registered User

    Mar 31, 2010
    Sharon, I'm so sorry to hear your sad news, there isn't an easy way forward for you or your dear mum. You and your family are in my thoughts.
    Kind regards, Jo
  5. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    How incredibly awful for you mum and for all of you. Thinking of you. Izzy x
  6. Nan2seven

    Nan2seven Registered User

    Apr 11, 2009
    Dear Sharon - This is so sad and so distressing for all of you. I do hope your poor mum is not in too much discomfort.

    Thinking of you and sending love, Nan XXX
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I`m so sorry Sharon. It must be dreadful to witness.
  8. Sandy

    Sandy Registered User

    Mar 23, 2005
    Hi Sharon,

    I'm very sorry to hear the situation that you and your family are in.

    It may or may not help, but it sounds like the medical team, in not putting a PEG in, is following the Alzheimer's Society's guidelines on palliative care for people with dementia:


    Has she had her swallowing evaluated by a Speech and Language Therapist (SaLT)?

    There are some things that can be done with the thickening of fluids and feeding techniques to reduce the risk of choking.

    Sadly, the reduction/loss of the swallowing reflex can occur in the very late stages of dementia.

    You should be discussing with her medical team all the steps that they can do to keep her comfortable through this final stage of her illness. They will not let choke to death and should be able to offer the appropriate palliative care to make her as comfortable as possible.

    Take care,
  9. Reb

    Reb Registered User

    Jun 13, 2010
    Shocked to hear

    Is it inevitable that the the swallowing reflex goes in the late stages of dementia?
  10. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005

    I am sorry you have to face this. I found this website which helped me - my husband also has swallowing difficulties, is on pureed foods and thickened drinks but still has problems.


    (I hope the link works).
  11. Sandy

    Sandy Registered User

    Mar 23, 2005
    Hi Reb,

    Welcome to Talking Point (TP).

    I wouldn't think that it's inevitable, but it does seem to be common in advanced dementia.

    A document on the Royal College of Speech & Language Therapists' website stated that

    Dysphagia is the term for some degree of difficulties in swallowing.

    The Alzheimer's Society's factsheet on later stages of dementia says:

    from: http://www.alzheimers.org.uk/factsheet/417

    Is your mother showing signs of swallowing difficulties?

    Take care,
  12. maryw

    maryw Registered User

    Nov 16, 2008
    Hello Sharon, what a distressing situation for you and your family. Do keep in close contact with the doctors to ensure your Mum receives the best palliative care. Xx
  13. sharon128

    sharon128 Registered User

    Jul 15, 2007
    thanks for your support

    thank you to everyone for your support
    mum has pureed food and thickened fluids which was advised by the salt team, we spoke to a gastro-enterolgist yesterday (doctors who deal with swallowing)about the PEG but because she pockets her food and is forgetting how to swallow now she could even choke on her own saliva because she has forgotten or forgets to swallow. Naso-gastric feeding is not an option as the don't like to do this as this can be more dangerous as asperation can occur so we just have to wait and see we don't have much faith left. sharon
  14. sharon128

    sharon128 Registered User

    Jul 15, 2007
    better news

    This afternoon all drips,oxygen removed mum sitting up looking around she's not done that for ages,although she still has pheumonia the doctors have come up with a care plan to ensure mum's future emgergency admissions are less. The salt team have increased her thickener in her fliuds from 3 to 6 and she is now on long term antibiotics so if she should asperate or get any infections these should'nt have to much affect on her. The home has been given instructions on the positioning to help prevent mum choking.
    We were phoned by the home earlier this evening to say she's back there. We now wait with baited breath to see what the next problem will be, I am emotionally exhausted if i can get to sleep tonight i intend on having a lie in. thanks for listening
  15. allylee

    allylee Registered User

    Feb 28, 2005
    west mids
    Hi Sharon, my mum lost her swallowing reflex in the last 12 months of her illness too.Her nursing home managed her pureed diet well but on one occasion she stole food off another residents plate and ended up being rushed to theatre for removal under anaesthetic.

    I didnt want mum to have a PEG tube inserted as her quality of life was very poor by that stage but of course thats a very personal decision for each family.

    I hope you get a peaceful night , love to you all x
  16. sharon128

    sharon128 Registered User

    Jul 15, 2007
    feeling numb

    Went to see mum this afternoon what a change from yesterday, she was alert, shouting the best we'd seen her in months,but today she looked haunted and waxen, we spoke to the home and my dad and i have spoken to the pallative care nurse who is going to visit mum this afternoon and we are going to see the GP along with the nurse perhaps tomorrow. Today i feel spaced out and numb but still very emotional, I hope the team can help mum she looked so scared it must be so traumatic not being able to communicate, it's like that for us not being able to know if she's in pain,scared or trying to tell us something. Got to got the phone's ringing
  17. sharon128

    sharon128 Registered User

    Jul 15, 2007
    better outlook

    Hi everyone
    yesterday it was doom and gloom, we spoke to the pallitive care nurse and rang mums GP, wheels to make her comfortable are now in place, yesterday i thought mum was going she had a haunted exression and looked very waxen her chest sounded terrible. We discussed pain relief and sips of water instead of food to stop her choking, awake most of the night going over have we made the right decision. We saw the doctor on her way out from visiting mum this morning her chest is clearing and she's has prescribed morphine patches,she also said mum had been fed and she swallowed it we both hugged the GP. Upon seeing mum she's still looks poorly and she had her eyes open and was propped up in bed. I feel a little better now not so anxious now things are in place.

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