1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    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. kat57

    kat57 Registered User

    Apr 5, 2016
    mu mum has dementia and over the last two mums seems to have forgotten to eat and how to eat, she has no interest in food, and seems to be dying in front of my eyes. I am at my wits end, the doctors don't know whats wrong with her. Has anyone else come across this, I've tried everything to get her to have something.
  2. la lucia

    la lucia Registered User

    Jul 3, 2011
    I'm assuming that you have had a referral to the SALT team just to check her swallow etc? My mother recently began refusing to eat and it became a bit of a challenge.

    She loved her food, would give me grief if she wanted her lunch and it wasn't ready and despite her dementia would still go out for lunch with friends occasionally. Then she had a stroke and her swallow became weak and she needed prompting.

    The swallow hasn't improved but after a while her appetite returned. She also has 2 Fortisip nutritional drinks a day. Everything else that was lost or damaged by the stroke returned after intensive therapy.

    Then she had a fall and was back in hospital where she has refused the same posh pureed meals she was woofing down at home. No one could figure out what was going on. The only thing she would eat unprompted was Belgian chocolate mousse when I brought it in.

    I go to the hospital (it's a specialist reablement ward) most lunchtimes and I'm the only person who can get most of a meal down her. It's hard work! I figured that it becomes a vicious cycle - if you don't eat your stomach shrinks and appetite diminishes further.

    Lunch involves lots of cajoling, bribing (chocolate mouse), constant chatter as a weapon of mass distraction, countdowns - just eat 5 spoonfuls then you can... 4 spoonfuls etc., "oh I've got to return the plate just finish this bit..." etc., All constantly repeated dozens of times. It's exhausting but it kinda works.

    It may not work for you because there's so many possible reasons for why it may be happening but I guess it's about trying to find a way in. For my mum I wonder if it's about maintaining some control over her life when she's lost so much.

    I've searched every thread on this subject for ideas and I understand it can be a phase that passes or it can become a permanent state of play. If that's the case I can see my mother in the future ending her days on Belgian chocolate mousse.

    The loss of the ability to initiate things - the need for prompting - was for my mum, both an effect of dementia and then was exacerbated by the stroke causing a hemorrhage in the same part of the brain.

    She comes home in a few days so it will be interesting to see if the return to familiar surroundings has any effect on her appetite. It could go either way.

    Maybe you could try offering less food more often? Exaggerate the favourite foods? A week on ice cream is better than nothing I reckon specially if there's even a smidgen of pleasure to be had. Fortisip or similar is really useful too in between. My mum gets 2 a day prescribed.

    It's so hard to know why some people with dementia reach this situation but I guess if physical reasons are ruled out by SALT then only trial and error and time will tell.
  3. kat57

    kat57 Registered User

    Apr 5, 2016
    apologies for not replying sooner, things have got worse with mum, shes in bed most of the day and wandering around the bungalow at night, she also has been diagnosed with ovarian cancer, so you can imagine its a busy time, I have tried eating with her, my 3 year old granddaughter also tries to get her to eat, but she refuses, her doctor is concerned shes not having fluids, but I cannot make her eat or drink, this is a terrible illness. Many thanks for your replies I wish you all the best with your own family illnesses.
  4. Mollygoose

    Mollygoose Registered User

    Dec 19, 2014
    Carers mam is getting worse

    Mother is 90 with dementia ! We have carers coming in 4times a day ! So how come when I call which is twice a day she has messed all over the toilet and floor on her bedsheet and her clothes ! She is double incontinant and hardly eats or drinks unless we feed her ! I go in and find she has no pad on ! I Talk to the carers most days and they recon that all is well when they leave ! So is it just bad timing or what ? But I seam to be doing it all ! Has anyone else had the same problem ?

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