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Not eating, but not that far gone

TraceyM

Registered User
Sep 21, 2015
16
Hi, I tried to post this earlier, but am not sure it went on the forum. My mum does not have end-stage AZ. She is in FAST1-5, but does not want to eat. She has made up excuses (bad taste, bad food), but ultimately says she has no appetite and simply does not want to eat. She had all sorts of tests, there is no other physical reason. All the advice on not eating seems to be around end-stage AZ. There is no guidance on somebody seeming to choose not to eat. We have had her in respite care, things are getting no better. Is somebody in FAST1-5 capable of making this type of decision? Can we/should we intervene with medication/Ng tubes she seems not to want? Thanks, this is so distressing, she if fading away in front of us even though she is still relatively speaking, in good mind.
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,417
66
Toronto, Canada
Are there any snacks or sweet things that she absolutely loves? If the only thing she wants to eat is cake, let her eat cake. At a certain point, it becomes more about the calories than the healthy items, in my opinion.
 

TraceyM

Registered User
Sep 21, 2015
16
Are there any snacks or sweet things that she absolutely loves? If the only thing she wants to eat is cake, let her eat cake. At a certain point, it becomes more about the calories than the healthy items, in my opinion.
Hi, we are trying everything but she is refusing everything, or sometimes taking one to two bites to get quiet, then nothing for the rest of the day
 

Tin

Registered User
May 18, 2014
4,825
UK
Is the lack of appetite a side effect of any medication she is taking?
 

Emac

Registered User
Mar 2, 2013
186
Tracey my Mum is the same and also not at end stage. She wont eat and drink, though at least she will eat cakes biscuits and ice cream. Not sure what to suggest. If your Mum still drinks will she take Complan or something similar? Maybe you could try that. Will she eat if someone feeds her? Could she be depressed? Is it worth an assessment from the psychatric nurse. Also a nurse friend of mine suggested that when the elderly refuse to eat sometimes it is a form of control i.e. the only thing left in their life they can control so they go on a kind of hunger strike, not sure how to work with that if that is really what is going on. Don't you sometimes wish you had a magic wand? :(
 

Spamar

Registered User
Oct 5, 2013
7,101
Suffolk
Hi Tracey, don't know what FAST-1 is, so can't comment. However, several years ago my OH (alzheimers and vascular dementia) stopped eating, except for very dark chocolate and fresh orange juice. Obviously he lost a lot of weight. I and the gp did everything we could to get him to eat, to no avail. I must admit I had nowhere to go, he wasn't so far along the dementia path that a ng tube would be possible, or tolerated. For no apparent reason, he started eating again. By then, his stomach had shrunk, so food had to be introduced with care. Eventually he regained most of his weight and lived several more years.
I know this doesn't help you, but these things do happen.
 

TraceyM

Registered User
Sep 21, 2015
16
Is the lack of appetite a side effect of any medication she is taking?
Yeah, I should probably have said. Blood tests, urine tests, dentist, removal of all medications, nothing. Her bloods are enviable for her age 87. Every food in the book, stealth feeding through Ensure/Complan, fruit, everything she liked, new things, old things... The lot. she does not want to eat. Tricky huh? She is such a lovely lady, but she takes stubborn to a new level.
 

TraceyM

Registered User
Sep 21, 2015
16
Hi Tracey, don't know what FAST-1 is, so can't comment. However, several years ago my OH (alzheimers and vascular dementia) stopped eating, except for very dark chocolate and fresh orange juice. Obviously he lost a lot of weight. I and the gp did everything we could to get him to eat, to no avail. I must admit I had nowhere to go, he wasn't so far along the dementia path that a ng tube would be possible, or tolerated. For no apparent reason, he started eating again. By then, his stomach had shrunk, so food had to be introduced with care. Eventually he regained most of his weight and lived several more years.
I know this doesn't help you, but these things do happen.
Hi, I'm glad to hear he went on to live well for more years. I hope we can achieve the same for Mum :)
 

TraceyM

Registered User
Sep 21, 2015
16
Tracey my Mum is the same and also not at end stage. She wont eat and drink, though at least she will eat cakes biscuits and ice cream. Not sure what to suggest. If your Mum still drinks will she take Complan or something similar? Maybe you could try that. Will she eat if someone feeds her? Could she be depressed? Is it worth an assessment from the psychatric nurse. Also a nurse friend of mine suggested that when the elderly refuse to eat sometimes it is a form of control i.e. the only thing left in their life they can control so they go on a kind of hunger strike, not sure how to work with that if that is really what is going on. Don't you sometimes wish you had a magic wand? :(
That strikes a cord, how do you get a psychiatric nurse? I asked before and it seemed like I was being 'a fusspot' for asking and I never got a good answer. Mind you I saw where this was going three weeks ago, whilst everybody thought it would sort itself out. Thx
 

Candlelight 67

Registered User
Nov 4, 2013
167
West Sussex
When my Mother first went on donepezil her appetite diminished. Its a little better now. Could it be a side effect of medication?

Now I visit my mother in her flat and give her a proper lunch which she eats if I stay. She really eats very little but she enjoys something small and sweet.

Someone once said to me refusing to eat is someone's last point of control over their person. I can see the truth in that.

I wish you well in finding a solution. People can just snap out of this.
 

TraceyM

Registered User
Sep 21, 2015
16
When my Mother first went on donepezil her appetite diminished. Its a little better now. Could it be a side effect of medication?

Now I visit my mother in her flat and give her a proper lunch which she eats if I stay. She really eats very little but she enjoys something small and sweet.

Someone once said to me refusing to eat is someone's last point of control over their person. I can see the truth in that.

I wish you well in finding a solution. People can just snap out of this.
Thank you. A couple of you have mentioned control, and although she has always accepted help, there may be something in it. I tried to get her to eat chocolate the other day, presenting it as my guilty treat to myself, and invited her to join me. She set chocolate with me until my husband said 'good calories!'. I genuinely think this is her choice, for whatever reason, just need to get her to change her mind!
 

Emac

Registered User
Mar 2, 2013
186
That strikes a cord, how do you get a psychiatric nurse? I asked before and it seemed like I was being 'a fusspot' for asking and I never got a good answer. Mind you I saw where this was going three weeks ago, whilst everybody thought it would sort itself out. Thx
My Mum is in a care home, so they organised this as they thought she was depressed and so did we. If your Mum is at home maybe the GP can organise this? Never mind what other people think- you are the expert re your Mum!
 

TraceyM

Registered User
Sep 21, 2015
16
My Mum is in a care home, so they organised this as they thought she was depressed and so did we. If your Mum is at home maybe the GP can organise this? Never mind what other people think- you are the expert re your Mum!
Thanks
 

MrsTerryN

Registered User
Dec 17, 2012
769
Mum has lost about 25 kilos since may 2014. Variety of reasons. She now has endless supply of tomato sauce chips and cheese with crackers. Also very nice soft drinks. I dont worry about the calorie content with mum anymore. She also eats most days one meal with the staff at the nursing home.
However I had said she is not to be forced either food or liquid. Mum had lost so many 'rights' this is something she still can control
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,417
66
Toronto, Canada
I tried to get her to eat chocolate the other day, presenting it as my guilty treat to myself, and invited her to join me. She set chocolate with me until my husband said 'good calories!'.
I think your idea of sharing treats is a good one. Tell your husband to be quiet next time. :D Perhaps if it's a social setting she might eat? It might be a little difficult for you but if you could eat with her, it might help.
 

TraceyM

Registered User
Sep 21, 2015
16
Mum has lost about 25 kilos since may 2014. Variety of reasons. She now has endless supply of tomato sauce chips and cheese with crackers. Also very nice soft drinks. I dont worry about the calorie content with mum anymore. She also eats most days one meal with the staff at the nursing home.
However I had said she is not to be forced either food or liquid. Mum had lost so many 'rights' this is something she still can control
Fair point, thanks
 

TraceyM

Registered User
Sep 21, 2015
16
I think your idea of sharing treats is a good one. Tell your husband to be quiet next time. :D Perhaps if it's a social setting she might eat? It might be a little difficult for you but if you could eat with her, it might help.
It is difficult at the moment, but we are trying to get a home near us. That would help a lot.
 

janey106

Registered User
Dec 10, 2013
139
Having similar problems with Mum but she is still at her own home wth 82 yr old Dad. Had a previous 'no eating' phase but it passed for about 3 months and recently restarted. Been again tonight and Dad eating nice dinner my sister had taken them but Mum refused all food all day ( but refused to get up until 1.00 pm anyway). Dad had begged her to eat but she refused. I asked her nicely then told her if she refused to eat she would be poorly and she would have to go to hospital .... She agreed to a bacon sandwich and vanilla slice. ( Salty food and sweet things are her chosen foods). When Dad asked her why she did it for me she admitted it was because I made it for her. Dad offers to make her food but she refused before I arrived. Took a while (my excuse is another long day at work) but dawned on me she now spends much of her waking time worrying where Dad is, he hasn't been home, is he in hospital etc, but he is there only she thinks he is her deceased Father so her worry is probably killing her appetite and she would never have let her Dad make food for her because 'it's not his job to cook'. A bizarre evening tonight, started forgetful, argumentative but then asked me what I do at work ( she thought I was at my first employers place which I left 30 years ago) but then asked me some insightful questions and was able to reflect on the challenges my work brings. Felt so good to have my old Mum back for half an hour. Then she reverted, like the scene in The Notebook.

On Nurse front, we demanded a Consultant assessment nearly 2 years ago and he was the one who recommended mental health OT. She (and Consultant) are our 'go-to' favourite people now.
 

little shettie

Registered User
Nov 10, 2009
218
My mum was similar. She lived alone and just wouldn't eat. She's a very determined strong willed lady and as people have suggested with your mum, it was a control thing. Have you tried reverse psychology with her? I know its so difficult but I think the more you try, the more they dig their heels in and refuse to budge. I just left the subject well alone and found that mum had eaten biscuits and then gradually other things but it had to seem like her decision to eat not mine. A tough one and I feel for you. Hope its resolved soon. xx
 

Kitten71

Registered User
Jul 22, 2013
157
East Yorkshire
The carer in my dad's nursing home said dad will sometimes eat for some carers but not others. As others have said, perhaps it's a control thing. Have you heard of Fortisip drinks? I think you have to get them through the doctor but may be able to buy them from the pharmacy. They are a protein/calorie drink which may be easier to consume rather than solid food. Another thought is are there any problems with her teeth? My dad had oral thrush after a course of antibiotics and he wouldn't eat or drink anything hot. I'm not sure I can think of anything else to suggest but I hope you have a breakthrough very soon xx