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Eating...not eating...drinking..not drinking

Splashing About

Registered User
Oct 20, 2019
425
I’ve read so much like this and think I want to post this thread to help me track things.

About 3-4 weeks ago mum stopped eating and drinking. She then had a tiny bit before stopping again. She was then admitted with a chest infection 12 days ago and stopped altogether. We’ve managed tiny sips and half a glass of juice here and there.

Yesterday the consultant suggested she had about 2 months left. She’d been on several days of complete food refusal and limited fluids. She was also deteriorating and no longer mobile.

Today we got her out of bed (with difficulty) down to the day room in a wheelchair and spent 60 minutes playing with the doll. She had 40mls of yoghurt and about 140mls of juice. So it all feels different. As I type this I’m realising that my perspective has skewed somewhat if I think 140mls of juice is life changing...

She did quite a big wee which I also find confusing. The kidneys are finding fluid to process
 

Ray96

Registered User
Sep 29, 2018
87
It is so tough when they start doing this, can she still chew I wonder, is she having trouble swallowing? When mum was in this phase I got her on ensure drinks but then started making soups and smoothies myself and blasting everything in a nutribullet blender to make everything smooth and quite runny.
In a home or hospice environment I think that mum would have gone down hill very quickly because she also became quite aggressive, particularly with me her son, but keeping her at home meant that I could coax her into trying different things, although it can get very frustrating of course when you have gone to the trouble of preparing something that she liked one day and then refuses the next. On one occasion after not eating and drinking for a few days I was desperate to get some fluids inside her and I tried pineapple juice, well after tasing it she had about three glasses I think it was all in one go, trial and error, and persistence did produce some results.

Then she went into hospital and the doctors gave her only a month to live this time last year, and I opted for hospice at home for end of life care. But she actually started to do reasonably well when she came back home, mainly on liquid food and water/juice, by removing solids completely all she had to worry about was to swallow, but sometimes she would forget how to do this and would choke. Anyway, she passed away suddenly this June surprising everyone, she was in no pain and what was described as a natural death, the hospice people were never required in the end, just the district nurses that came regularly and carers. So it's hard to tell exactly what timescale to expect, I think it's best though at this stage to lower expectations, if our loved one no longer wants solids or can't chew, fair enough go for liquid food, I guess it's all about us adapting to them as the illness progresses.
 

Splashing About

Registered User
Oct 20, 2019
425
It is so tough when they start doing this, can she still chew I wonder, is she having trouble swallowing? "..........I think it's best though at this stage to lower expectations, if our loved one no longer wants solids or can't chew, fair enough go for liquid food, I guess it's all about us adapting to them as the illness progresses.
She can chew and swallow fine. She has just decided to stop as far as I can see. Short of prying open her lips and teeth we can’t feed her. Today she nibbled the edge of a biscuit, had a couple of teaspoons fortified yoghurt and small amount of pineapple juice. We offer regularly but she firmly says “no I’m not going to”
I think this is a next stage in the illness. Oddly her mood has improved with less food and drink. She seems happier. She had terrible IBS and diet and consequences have been a huge feature of life for a number of years. That aspect has been removed. I can’t believe she has made a decision based on this as I don’t think she’s capable of that cognitive conclusion.
 

Ray96

Registered User
Sep 29, 2018
87
Indeed, I'm afraid it's just something that they do, refuse to eat and drink, as you say, it's the next stage in the illness. It also seems to me that this can be a rebellious stage, like a child that wants to be naughty, or a form of control that they want to cling onto, in a world where they are losing or lost control of everything in their lives.

Terrible to watch, I have been there and It all comes back to me like it was yesterday, I sometimes forget about how bad things got with my own mother.
I know in some European counties they come to your house with an IV when someone gets very dehydrated, but they don't do that in the UK, this is what worried me the most with mum and did cause urine infections and severe damage to her kidneys in the end.
 

tryingmybest

Registered User
May 22, 2015
631
I know just how you feel. My Mum is at home with me, and I am her sole carer. She still has a little mobility but I do everything for her as she can't do anything at all for herself and is also pretty much non verbal. She seems to have spells of not eating or drinking then picks up a little but the past couple of weeks its been really hard to get her to take more than a couple of sips of every drink I make her and she's only been eating a mouthful of banana and sometimes an eigth of a sandwich. Just says no and starts crying everytime I try. I've had her bloods checked and a nurse has looked her over including her mouth but can find nothing physically wrong. She has been checked by the SALT team. I've taken her to the dentist too and have a doctors appointment on Tuesday. I just don't know what to do but I think what is worse is the constant crying, wailing, pacing and drumming of her feet and constantly tapping of her fingers plus awful uh uh uh noises all the time. It's heartbreaking. I just wonder how much longer she can go on like this, or me for that matter.
 

Splashing About

Registered User
Oct 20, 2019
425
I know in some European counties they come to your house with an IV when someone gets very dehydrated, but they don't do that in the UK, this is what worried me the most with mum and did cause urine infections and severe damage to her kidneys in the end.
We discussed fluids. If we felt the dehydration was causing the confusion and that was contributing to the failure to eat we’d have had them. However fluids will not help that aspect...it will cause increased incontinence, increased need for personal care, make bed sores more of a risk and ultimately make her unhappy. So we agreed with the consultant that it wasn’t a good plan
 

Splashing About

Registered User
Oct 20, 2019
425
I know just how you feel. My Mum is at home with me, and I am her sole carer. She still has a little mobility but I do everything for her as she can't do anything at all for herself and is also pretty much non verbal. She seems to have spells of not eating or drinking then picks up a little but the past couple of weeks its been really hard to get her to take more than a couple of sips of every drink I make her and she's only been eating a mouthful of banana and sometimes an eigth of a sandwich. Just says no and starts crying everytime I try. I've had her bloods checked and a nurse has looked her over including her mouth but can find nothing physically wrong. She has been checked by the SALT team. I've taken her to the dentist too and have a doctors appointment on Tuesday. I just don't know what to do but I think what is worse is the constant crying, wailing, pacing and drumming of her feet and constantly tapping of her fingers plus awful uh uh uh noises all the time. It's heartbreaking. I just wonder how much longer she can go on like this, or me for that matter.
This sounds incredibly hard. I feel very lucky that my mum is in hospital and we have support. I wonder if your mum is in pain? Can you call a GP before Tuesday?
 

Ray96

Registered User
Sep 29, 2018
87
Just one more tip from me that might help, remember that our loved ones sense of taste alters, I found that sweet drinks/smoothies/porridge worked best, I generally added honey to things, also cheese in food, like cheese in homemade soup. Oh and Mirtazipine calmed her down and improved her appetite a little.
 
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tryingmybest

Registered User
May 22, 2015
631
This sounds incredibly hard. I feel very lucky that my mum is in hospital and we have support. I wonder if your mum is in pain? Can you call a GP before Tuesday?
She's been doing this on and off for 3 years and had all sort of pain meds to no avail. I really don't know if she's in pain or not but she can't tell me as doesn't speak. I read somewhere they find it comforting to keep making repetitive noises. This is the first doctors appointment I could get after waiting 2 weeks. I'm not holding my breath as they will say the usual thing that there's nothing they can do and it's part of the disease. I just find it so distressing day in day out but it must be so much worse for my poor Mum.
 

tryingmybest

Registered User
May 22, 2015
631
Just one more tip from me that might help, remember that our loved ones sense of taste alters, I found that sweet drinks/smoothies/porridge worked best, I generally added honey to things, also cheese in food, like cheese in homemade soup. Oh and Mirtazipine calmed her down and improved her appetite a little.
My Mum just cries and refuses whatever I give her. As you say, just like a little child. She was put on Mirtazapine back in February and initially it calmed her and improved her appetite but no longer sadly, despite increasing tbe dose.
 

Ray96

Registered User
Sep 29, 2018
87
My Mum just cries and refuses whatever I give her. As you say, just like a little child. She was put on Mirtazapine back in February and initially it calmed her and improved her appetite but no longer sadly, despite increasing tbe dose.
I'm sorry to hear that, it's so difficult to know what to do next and make the right choices/decisions, particularly when your dealing with this interior agitation and depression that arises in people with dementia. I know that there are other medications that you can try like memantine and antipsychotic drugs, but the GP has only limited knowledge of Psychiatric drugs of course, the memory clinic would be your best bet. Some of this medication can come in liquid form, and you can crush some tablets in a little juice if she wont swallow whole tablets or spits them out. Very much a case or trial and error.

Sorry I'm not being much help, it's hard, I know.
 

Splashing About

Registered User
Oct 20, 2019
425
100 ml of Fortisip taken today and about 4 teaspoons of yoghurt with crushed pills.
Jaffa cake, shortbread, rice pudding, more yoghurts and fortified drinks, bread and butter, pineapple juice all refused.

Excellent mood, singing and happy. The less food, the happier she gets. She is almost back to the normal mum pre chest infection. It’s bizarre to realise how little sustenance she is having.
 

Splashing About

Registered User
Oct 20, 2019
425
Nothing taken in whatsoever today. The nurses looking after her know she is end of life but “we’re not there yet” and I agree it could still be a while. She did sleep most of today. No urine output for about 48 hrs I think.

She point blank refuses anything whether it’s mouthcare, drinks, fortified yoghurt, ice cream, milk, pineapple juice, rice pudding...all her favourites. It’s a very firm no and angrily shouts “go away” if you persist.

Consultant discussed EOL care with us today. I was distressed to see her asleep most of the day but grimacing a bit and I realised it was a mouthful of phlegm causing her distress. She refused to open her mouth to allow tissue to wipe or suctioning or mouth-care. He wants to assess her for a further 48 hrs before instigating anything. We discussed palliative care. Straight after this we went back into her having a little chatter to herself and I questioned the conversation. It’s a complete rollercoaster
 

canary

Registered User
Feb 25, 2014
12,189
South coast
(((((((((((((((((((((((((hugs)))))))))))))))))))))
This is a very hard time. It is possible that she may bounce back and start eating again - it happens more often than you would expect, but there again, of course, she may not. It is truly a roller coaster. I felt I was in limbo land and all I could do was wait.

Make sure you dont forget to eat and sleep yourself in all this
xx
 

Splashing About

Registered User
Oct 20, 2019
425
I don’t want to eat. Part of me wants to fast with her. I am aware I need to eat to be able to function and support her and my dad.

I gave up on working today. I feel like I may never work again.
 

tryingmybest

Registered User
May 22, 2015
631
I'm sorry to hear that, it's so difficult to know what to do next and make the right choices/decisions, particularly when your dealing with this interior agitation and depression that arises in people with dementia. I know that there are other medications that you can try like memantine and antipsychotic drugs, but the GP has only limited knowledge of Psychiatric drugs of course, the memory clinic would be your best bet. Some of this medication can come in liquid form, and you can crush some tablets in a little juice if she wont swallow whole tablets or spits them out. Very much a case or trial and error.

Sorry I'm not being much help, it's hard, I know.
Mum has Vascular Demrntia and Memantine can only be prescribed for Alzheimers or Alzheimers with mixed dementia. I wouldnt be wanting to put Mum on antiphyschotic drugs. We are not under the memory clinic as she was never formerly diagnosed via that route. A psychiatrist from the Court of Protection came to my home and just said Mum had no capacity due to Vascular Dementia. We were going through a very contentious case with CoP and the judge sent him as there was no formal diagnosis so the Memory Clinic will not deal with Mum sadly.
 
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tryingmybest

Registered User
May 22, 2015
631
@Spashing About I'm so sorry. It truly is heartbreaking and a total emotional rollercoaster. Hugs. X