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. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,846
    Suffolk
    Hi
    Quick resume for those who don't know. OH, age 82, went into a care home for respite shortly after Easter, for respite. It was extended cos I got tummy bug, then he got chest infection. From 3rd week in May the respite was made permanent.
    He has last stages of mixed dementia, Alzheimer's and vascular and was diagnosed about 8 years ago, although he had it at least 2 years previous to that.

    Since he has been in the home he has lost weight ( about 10kg, 62 kg to 52 kg), lost ability to walk, lost most of his speech. He is not eating ( he has previous form there, went down to about 47 kg but recovered). That was about 5 years ago.

    Over the last three weeks he has fallen out of bed 3 times, cutting head and elbow. I have also seen him have fits that only last a few seconds, but often with both arms and legs flailing and eyes rolled up. I am assuming that it has been these fits that caused him to fall out of bed.

    Over the last two days he has looked quite ill and I have assumed this was cos he really was end of life. Today, however one of the nurses told me that she had been feeding him with hi cal fluids with a syringe, I am assuming via the mouth. To be fair, he is looking better, but that might be sleeping for 24 hours!

    Normally his eating is poor, because he refuses most food!

    Now, when he had constipation and I asked them to undertake things that have worked for him before, this wasn't done for several days until a gp came. I have been told that the diet team has been asked to see him ( not SALT, who, I understood, did these things). I don't think the home are actually giving him the type of food I asked them to give, but on the other hand, he's just not eating former favourites anyway. But some meals don't seem appealing to a poor appetite!

    Note that he is very stubborn!

    Now, my question is, can they just change his diet without consultation ( I have LPA h&w)? I have visited daily whilst he has been really bad. I realise if he doesn't eat, that's it, but by refusing food, I feel, it's his decision. I would not permit PEG feeding or nasogastric tube, both if which would be removed by him in short order anyway. So why are they prolonging his life doing this?
    Surely this should be a decision to be made after consultation?

    I have found it very hard to let go completely after caring for so long, maybe I'm hypersensitive!

    Sorry for long read!
     
  2. Beate

    Beate Registered User

    May 21, 2014
    11,495
    Female
    London
    Have you had a meeting with the care home and told them of your concerns and wishes? Maybe you could also meet with the GP and the diet team to a) gain a clearer understanding of his deterioration and prognosis and b) impress on them his/your wishes? It would probably be helpful if they were set out in writing, ie in which cases you would allow hospital admission and in which cases you would not, and which treatments should or should not be undertaken etc.
     
  3. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,491
    Female
    Near Southampton
    #3 Saffie, Jul 25, 2015
    Last edited: Jul 25, 2015
    I think the carers will take instructions from the nurse where the care of the resident is concerned and the nurse will be told what to do by the GP. That's what happened in Dave's nursing home anyway.
    I believe SALT usually becomes involved when swallowing becomes a problem or a person is holding food in their mouths, possibly for that reason, rather than refusing to attempt eating.

    I do think NH staff see their duty as doing the best they can for the residents and will not want to just let somebody fade away without trying to help them eat and especially to drink. They will have certain strategies but whether this should include using a syringe, I'm not at all sure so I would ask for a meeting to discuss your OH's Careplan regarding feeding. A request to meet with the GP for clarification wouldn't go amiss either.

    Best of luck, it's not a great time for you. Much sympathy. xxx
     
  4. canary

    canary Registered User

    Feb 25, 2014
    9,383
    Female
    South coast
    Mums CH is like saffies - the GP has the ultimate say about this sort of thing. I have filled in a form to say about my wishes for thing that should, or should not be done, but I must say that I had not considered syringe feeding and I havent covered this either.

    I agree, talk to the GP, or get a meeting with the manager and GP to discuss your concerns.
     

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