Eating and drinking

Pebbles63

Registered User
Dec 11, 2020
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I seem to be going round in circles! Mum entered a care home at the end of January. She has Alzheimer's which seems to be progressing quite rapidly. Both the care home staff and myself are concerned as she is eating and drinking very little and is losing weight. They have tried all sorts of things, soft foods, finger foods, fortified drinks and soups, snacks, sweets etc. She has been referred to a dietician (who despite being told Mum's not eating and drinking said she call back in a month to see how things are!!), community dentist (no appointment as yet) and the GP has prescribed fortisip (which she won't drink). Mum is also refusing to take medication. She has, so far, refused to allow anyone to do any tests and will not have her covid jab. When I call the care home I get the message over and over again that Mum is eating and drinking very little but there doesn't seem to be any plan in place as to how things are going to work out moving forward. The GP visited today and has again said Mum needs to have a blood test. They've been saying this for four weeks! I'm not sure what else can be done or I guess who should be making any decisions. When would it get to the point where a hospital admission might be considered and what happens if Mum simply refuses to go. I have power of attorney for health and wellbeing but the care home has also mentioned Deprivation of Liberty Safeguarding (DOLS). If anyone has been in a similar position and can offer any advice I'd be very grateful, I am really struggling with all of this. I should also say that Mum seems happy in herself and is not at all distressed.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
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Kent
I should also say that Mum seems happy in herself and is not at all distressed.

Hello @Pebbles63

Is it possible your mum`s body is shutting down?

The care home could continue offering her food and fluids as well as her medication so they are not leaving her be or neglecting her but if she cannot accept what is being offered and is in no pain I would accept this as a final stage in her dementia .

The doctor is suggesting a blood test but it might be a formality to show continued interest. What might a blood test show and would there be any appropriate treatment?

If she seems happy in herself and not distressed, I would accept this situation. It is terribly sad for you but I can`t see how the situation could be changed.
 

canary

Registered User
Feb 25, 2014
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South coast
I wondered whether your mum was reaching the final stages too @Pebbles63
This does not necessarily mean that she has reached End of Life, but as the disease progresses they reach a stage near the end which is characterised by eating and drinking less and less and losing weight. It is indeed caused by the body very slowly shutting down over the weeks and months.

Can you talk to her GP and have a very open chat about how he/she sees this?
 

Old Flopsy

Registered User
Sep 12, 2019
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@canary how your words resonate with me. My OH has now been in the care home just a week an is eating very little so they give him Fortisip, but he does just sip it.

When he was at home I was constantly trying to get him to eat and drink- he would bundle food into tissues and hide it when he thought I wasn't looking. I found these parcels of unwanted food all over- in his pockets, his manbag, etc. Other times I would find food on the drive where he had thrown it out of the back door.

His weight has dropped from 10 st to under 8 st. It was a constant worry.

I had not realised the significance of his reluctance to eat and drink- signifying reaching another stage- it is quite a shock.
 

Pebbles63

Registered User
Dec 11, 2020
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Thank you for your responses. I did wonder whether this was a progression of Mum's Alzheimer's as opposed to anything else. I think the GP wants bloods done to rule out anything else but this will only cause Mum distress. Mum has now lost over 2st in weight in quite a short space of time, this is not due to healthy eating but complete lack of eating. It's very sad as we only had her diagnosis last July. Unfortunately we lost my Dad in the October and they'd been together over 60 years. I appreciate your honest words as my brother and sister seem to think that Mum should be taken into hospital, sedated if necessary, and rehydrated and/or tube fed. The thought of that fills me with dread.
 

Caroline T

Registered User
Mar 22, 2021
27
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Thank you for your responses. I did wonder whether this was a progression of Mum's Alzheimer's as opposed to anything else. I think the GP wants bloods done to rule out anything else but this will only cause Mum distress. Mum has now lost over 2st in weight in quite a short space of time, this is not due to healthy eating but complete lack of eating. It's very sad as we only had her diagnosis last July. Unfortunately we lost my Dad in the October and they'd been together over 60 years. I appreciate your honest words as my brother and sister seem to think that Mum should be taken into hospital, sedated if necessary, and rehydrated and/or tube fed. The thought of that fills me with dread.
Hi, That is very sad for you. Perhaps your Mum is depressed and grieving due to her husbands death. Moving into a home is also a big change in her routine. My Mum also suffered from apathy from a bereavement and didn't want to eat, she has since improved and was asked what she would like to eat, her favourite was cake!! Pretend it is a special meal for a celebration and use colourful plates, paper napkins and pretend it is a buffet or a picnic.
Perhaps you could ask the home to prepare some of her favourite foods and drinks, jelly and ice cream is also a good choice.

The blood tests maybe to test for low sodium levels, infections or vitamin levels. You could try distraction with music or looking at photos as the nurse takes the bloods. That worked for Mum, who is also distressed at the sight of needles.
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,258
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High Peak
Thank you for your responses. I did wonder whether this was a progression of Mum's Alzheimer's as opposed to anything else. I think the GP wants bloods done to rule out anything else but this will only cause Mum distress. Mum has now lost over 2st in weight in quite a short space of time, this is not due to healthy eating but complete lack of eating. It's very sad as we only had her diagnosis last July. Unfortunately we lost my Dad in the October and they'd been together over 60 years. I appreciate your honest words as my brother and sister seem to think that Mum should be taken into hospital, sedated if necessary, and rehydrated and/or tube fed. The thought of that fills me with dread.
I would be filled with dread too. I wonder why your siblings think it is 'OK' to force feed your mother - what purpose would that serve? Besides, the system doesn't really work like that - in order for your mum to be 'taken away and sedated' she would have to be sectioned and certain conditions need to exist for that to happen. I don't think your mum meets any of those conditions - she is not violent or causing herself or anyone else harm. Choosing not to eat would not be considered sufficient reason. Consider also her refusal to take meds or have treatment. That's her decision. So in order to feed her, she'd have to be kept sedated and in bed - for ever. I'd say that's about zero in terms of quality of life.

Maybe you should ask your siblings how they'd feel if that was done to them.

Dementia is terminal. There - I've said it. It gets worse and worse and then you die.

My mother had a poor appetite when she went into a care home. She was there for 3 years, just picking at bits and surviving on chocolate buttons and biscuits mostly. I tried everything to get her to eat (as did the carers) but as she told me, food just didn't interest her anymore. She said she couldn't be bothered with it and never felt hungry. It was only in her last few weeks that she stopped eating completely - even chocolate was refused. She was in stage 6 by then but still talked (mostly made up things) and was mobile with a frame, so not in the classic 'final stages'. But she was 'not herself' those last few weeks. They thought she might have an infection but nothing was found, she just went very quiet and withdrew inside herself somehow. Then I got a call to say she'd stopped breathing. (They'd gone in her room and she was dead though they don't say that to you!) The carer had been talking to her a couple of hours earlier.

I think people often stop eating when it gets near the end. The body needs little in the way of calories and it's part of the process of dying. I know our instinct is to panic and try anything when a loved one doesn't eat but there are times like this when it is kinder not to force the issue. It's actually quite difficult to starve yourself to death - think of protesting hunger strikers. But if your mum is not eating it's because her body is telling her she doesn't need to - it isn't some sort of protest.

The last line of your post says your mum seems happy and not at all distressed. Surely better to see out her days like that than sedated in a secure hospital and force fed. Food will not make her better.
(Just my opinion)
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
my brother and sister seem to think that Mum should be taken into hospital, sedated if necessary, and rehydrated and/or tube fed. The thought of that fills me with dread.
It would fill me with dread too.
Tube feeding is simply not appropriate for people with advanced dementia as they find it very distressing and often try and remove the tube.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,443
0
Kent
Nasal tube feeding was offered to me for my husband and it horrified me. I imagined he would struggle with the intrusion and it would cause him more stress than ever.

The consultant who offered it actually seemed relieved when I refused. I felt it was just a courtesy suggestion.

I would only have accepted intervention if I thought my husband was in pain or struggling to breathe.
 

jennifer1967

Registered User
Mar 15, 2020
23,134
0
Southampton
your mum wouldnt be able to reason it out and wouldnt understand why this doctor was attacking her. my nan had refused fluids, food, drips even wetting her lips. as far as my nan was concerned she had made the decision that was right for her
 

Pebbles63

Registered User
Dec 11, 2020
12
0
I would be filled with dread too. I wonder why your siblings think it is 'OK' to force feed your mother - what purpose would that serve? Besides, the system doesn't really work like that - in order for your mum to be 'taken away and sedated' she would have to be sectioned and certain conditions need to exist for that to happen. I don't think your mum meets any of those conditions - she is not violent or causing herself or anyone else harm. Choosing not to eat would not be considered sufficient reason. Consider also her refusal to take meds or have treatment. That's her decision. So in order to feed her, she'd have to be kept sedated and in bed - for ever. I'd say that's about zero in terms of quality of life.

Maybe you should ask your siblings how they'd feel if that was done to them.

Dementia is terminal. There - I've said it. It gets worse and worse and then you die.

My mother had a poor appetite when she went into a care home. She was there for 3 years, just picking at bits and surviving on chocolate buttons and biscuits mostly. I tried everything to get her to eat (as did the carers) but as she told me, food just didn't interest her anymore. She said she couldn't be bothered with it and never felt hungry. It was only in her last few weeks that she stopped eating completely - even chocolate was refused. She was in stage 6 by then but still talked (mostly made up things) and was mobile with a frame, so not in the classic 'final stages'. But she was 'not herself' those last few weeks. They thought she might have an infection but nothing was found, she just went very quiet and withdrew inside herself somehow. Then I got a call to say she'd stopped breathing. (They'd gone in her room and she was dead though they don't say that to you!) The carer had been talking to her a couple of hours earlier.

I think people often stop eating when it gets near the end. The body needs little in the way of calories and it's part of the process of dying. I know our instinct is to panic and try anything when a loved one doesn't eat but there are times like this when it is kinder not to force the issue. It's actually quite difficult to starve yourself to death - think of protesting hunger strikers. But if your mum is not eating it's because her body is telling her she doesn't need to - it isn't some sort of protest.

The last line of your post says your mum seems happy and not at all distressed. Surely better to see out her days like that than sedated in a secure hospital and force fed. Food will not make her better.
(Just my opinion)
Thank you for your response and your honesty. I really feel that my siblings don't understand the nature of dementia and things moving quickly so close after losing my father naturally just want Mum to be OK. Can I ask who decides what stage someone is at? I think this is part of what I'm finding so difficult. The GP is ordering medical tests, the care home are referring to various services but I had thought that Mum would have far more input from specialists for instance a memory team or mental health services? I've recently been in touch with our local memory clinic and they seem to think that Mum should attend an appointment with them at their clinic which I'm sure she will refuse to do.
I also agree with you that I would rather my Mum see have her days being happy and well cared for rather than distressed in unfamiliar surroundings. Thank you again.