1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Hali1

    Hali1 Registered User

    Dec 12, 2015
    5
    Hi there,

    My grandad had a stroke two years ago and swallowing has always been the main issue.

    In the last few months, the fact that he has vascular dementia has been raised and though he had repeat chest infections last year, this year he had no hospital admissions for the chest until the beginning of October.

    He was admitted with aspiration pneumonia in October and since then he has been admitted repeatedly for the last two months. He has been one week in hospital, one week out and then back again. This cycle has continued.

    When he doesn't have the infections, his cognitive abilities are good. He is very responsive, he communicates (despite the fact that his speech was affected by the stroke), he laughs, he watches tv, he has a nice quality of life at home with his family.

    So my main question is about PEG feeding. In the past we were adamant we didn't want a PEG but at this stage, his swallowing is becoming so poor that it seems the only option. Though i fear the hospital may deny him this.

    Questions:

    - Should we push for a PEG?

    - And how do we convince the hospital to do this? As i feel they may refuse it based on his comorbidities.

    Many thanks for your help.
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,216
    Merseyside
    Welcome to TP :)

    When I have to make decisions I always think what would by Dad want for himself & take it from there?
    Do you know your grandads wishes? Have you discussed the pros & cons with the Drs?
     
  3. meme

    meme Registered User

    Aug 29, 2011
    1,955
    Female
    London
    If you know his wishes that is all good..but otherwise it is up to you and the hospital...personally I would never want peg feeding for myself or for a relative or loved one at this stage...
     
  4. Leswi

    Leswi Registered User

    Jul 13, 2014
    120
    Bedfordshire
    I think the simple answer is that you can't push for PEG feeding, a Consultant will suggest that option if it is considered necessary and appropriate. Diet modifications such as thickened fluids, soft and purée diet would probably be tried first.
     
  5. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,623
    USA
    I'm so sorry to hear about your grandfather, Hali1. Welcome to TP. It's always open!

    Apologies if you have already tried this, or I get the terminology wrong, but have you had an assessment from what I believe is called the SALT team? If not, I would pursue this.

    I think you might also benefit from more information from/conversation with the consultant, doctors, nurses, other staff, et cetera, so you can have a clear picture of all the possibilities and the risks and benefits of each.

    Best wishes in this difficult time.
     
  6. Hali1

    Hali1 Registered User

    Dec 12, 2015
    5
    Thanks


     
  7. Hali1

    Hali1 Registered User

    Dec 12, 2015
    5
    Thanks

     
  8. Hali1

    Hali1 Registered User

    Dec 12, 2015
    5
    Thanks. We have done all that for two years. Recently the swallowing has deteriorated drastically and the only option is NG feeding or a PEG.

    And i have found in the two years that we have cared for him, that we have had to push and fight for everything.

     
  9. Hali1

    Hali1 Registered User

    Dec 12, 2015
    5
    Thanks Amy. Yes he has been reviewed and we have 'risk fed' for two years but the swallowing has deteriorated significantly.


     
  10. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,110
    Toronto, Canada
    My sister and I have decided not to go for PEG feeding, but when my mother was well, she was very clear about not wanting to "be kept alive by machines" and we think PEG feeding falls into that category.

    It is a very personal matter and I think you need to research things carefully and have a thorough discussion of all the pros and cons with a medical person.
     

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