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When someone stops eating

(45 Posts)
DowntonTrout Fri 25-Oct-13 12:51:28

Following on from my other thread about mum I wanted to ask some specifics and thought it would get lost on there.

So mum is settled in her nursing home. She is able to walk with a frame now but is still not eating. This has been going on since July. She is drinking enough and has the high calorie Calgen (?) shots. Her actual food intake is a couple of pieces of banana or a slice or two of carrot, maybe a biscuit, per day. That's it. Even with encouragement. She just covers her mouth and refuses.

Her weight has dropped dramatically. She is about 47kg and skin and bone. At one point, when she was admitted to hospital, she had stopped drinking but they remedied this and she is basically surviving on the fluids. Soft foods are no good either, she just doesn't want to eat full stop.

So, she can't continue like this forever I know. Obviously she has little energy, sleeps a lot, would like to stay in bed all day but they are doing their best to get her up and dressed every day, not always successfully. I think her body can't accept the food anymore, you can hear when a mouthful hits her stomach and it is uncomfortable for her. I think this adds to her reluctance to eat.

How long can she go on like this? the calories from the drinks and shots are keeping her alive but she is so weak that I think an infection would probably finish her off. Particularly as she is also uncooperative with medication. I don't want any interventions, feeding tubes or PEG is out of the question. I am wondering if they should stop the Calgen shots as surely these are artificially prolonging the inevitable? Or would that be withdrawing treatment? I don't know what I'm asking really. It is like being in a state of limbo, just waiting, it is only going to go one way.

CiderwithBuda Fri 25-Oct-13 13:17:54

I'm sorry Downton. It sounds horrible. I can't answer your questions unfortunately but I'm sure someone will be along to do so. Just wanted to sympathise as I understand a little. My mum has just been put onto a soft food diet as she can't chew or swallow properly any more. It's horrible.

YDdraigGoch Fri 25-Oct-13 13:23:04

Having been through something similar with my MIL and DF, I would ask for the Calgen to be withdrawn. It sounds hard, but you are effectively prolonging her life against her wishes. MY DF decided he'd had enough, and stopped eating. He drank cartons of high cal meal replacement drinks for a while, but soon refused them too. He had cancer, so knew he was coming to the end, and was so fed up with the treatment he took things into his own hands.
Are you able to talk to her, to discuss what she wants? Or isn't she capable of that? If it's down to you to decide, then I think you have to make one of the hardest decisions you'll ever have to make - but I think you know what the right thing to do is.

DowntonTrout Fri 25-Oct-13 13:36:37

No, she isn't capable of discussing anything. She is just blank. Will answer yes or no to give a response but doesn't really know what she is replying to.

To get her to eat or drink you have to put it in her mouth, or hand, and then remind her. She will say yes, but will not put things to her mouth.

She did have the fortisip drinks for a while but it is just too much for her to take- could take hours to drink one- which is why they put her on the 40ml shots.

The nurses are worried, I think because they feel they are failing to meet her needs, but what can they do apart from offering and encouraging. And what is it all for anyway when mum won't get any better?

CMOTDibbler Fri 25-Oct-13 13:39:09

I think in your situation, I'd be sitting down with the Matron or nursing manager, and having a discussion of what will be in your mums best interests in the months to come. For instance, if your mum gets an infection, do you want her to have antibiotics or would you like her to be made comfortable and nursed, but see what happened?
I think I would stop the supplements, obviously get them to encourage her to eat and drink, offer her ice cream or anything she might fancy.

My mum is eating less and less, some days nothing, and will rarely eat food that needs chewing or that has lumps. She's 5'8, and probably weighs less than 55kg now - you can see all her ribs clearly. Dad gives her a lot of clotted cream ice cream, which she likes, but the supplements get spat sad so we've stopped trying those.

DowntonTrout Fri 25-Oct-13 14:06:53

Yes I think I will do that. I had filled out forms for her new GP, including a DNR, which they queried. It seems that everyone is so concerned about prolonging life at the moment, possibly because of all the bad press about the LPC, and are afraid of reprisals if they have not done everything they can to keep someone alive.

But what they are prolonging is a miserable existence with no hope for improvement. Nobody wants to stop trying but sometimes enough is enough.

CMOTDibbler Fri 25-Oct-13 14:27:25

You might want to put things in writing after the meeting, so your wishes are very clear - and the staff know that they have written authority.

I agree about prolonging a miserable existence. My mum isn't as far down the road as yours, but I'd say she now enjoys 1 day in 15. Yesterday was one, but today she's back to vomiting and sleeping

alicetrefusis Fri 25-Oct-13 14:28:29

When my Dad went into care and rapidly declined physically and mentally, I spoke to his GP, then arranged a meeting with him, my father and mother and me, to talk about his future care needs.

The GP was great, discussed everything carefully with us all. At the time Dad was sometimes lucid and sometimes not. When asked a direct question about prolonging life or not, he answered , vehemently, 'not'.

A 'Do not Resucitate' was placed on his medical records, and it was the right thing to do for him, though an awful decision to make when the final decision was made.

CiderwithBuda Fri 25-Oct-13 14:31:10

We have already had the DNR discussions. Need to sit down and talk to my dad and sisters soon.

alicetrefusis Fri 25-Oct-13 14:33:34

Gosh sorry Downton sorry just read down to your recent post. So sorry you had the hassle of the DNR being queried. There's a lot of nonsense talked about prolonging life for its own sake, in my view. I would never let one of my beloved pets linger and suffer, so why have to watch a close relative suffer?

For what it's worth my Dad was on the Liverrpool Care Pathway - and it allowed him a peaceful and dignified end. It's all about conmtext and application I think.

I do hope you can get some resolution soon to this awful dilemma.

pudcat Fri 25-Oct-13 21:15:51

Downton If it helps we have discussed an end of life care plan for Mum with the NH. The dr has said palliative care as she does not want to go back to hospital. She is also on DNR. The NH are fine with this as Mum had decided this before she got vascular dementia. I totally agree that enough is enough. It breaks my heart to see my Mum and others in the NH like this.

DowntonTrout Fri 25-Oct-13 22:35:57

Thanks pudcat and everyone.

I just feel like I've had enough, I can't bear watching this and im fed up of visiting and worrying and not getting anything back. Plus feeling guilty for not being able to do anything and guilty for wishing it done with- if I could I would run away.

But of course I won't do that. I'll see it through. It's hard though, really hard. And sad, incredibly sad.

Needmoresleep Sat 26-Oct-13 07:06:59

flowers flowers flowers

alicetrefusis Sun 27-Oct-13 17:56:11

Oh Downton - I understand. I wished it done with too. It's absolutely OK to feel like that. And it is hard, and it is sad. More than I ever thought it would be.

Thinking of you.

pudcat Sun 27-Oct-13 19:06:33

I wish it done with as well. I never know how my Mum is going to be each time I go. After the most awful time 2 weeks ago the last 2 visits were a lot better and Mum was happy. Today was awful, she kept saying she was unhappy, no one liked her and they did nothing and didn't feed her. The nurse said she ate her dinned and had won at throwing bean bags at skittles. I gave up after half an hour and came home. Nearly 2 hours travelling in this weather for a sad visit. She will not remember I have been.

skyblue11 Mon 18-Nov-13 18:11:05

Downton, so sorry to read this, I can relate to how you feel.

my Dad had DLB and he became unable to swallow, I too had to watch him die, it's the worst thing you can go through seeing a loved one suffer. The worst thing for me was we had this end of life care, palliative care supposedly when he had a sign above his bed in hospital saying 'nil by mouth' then he'd get staff leaving full meals in front of him I was so upset. I feel sure he was in pain and the hospital were awful, no time for him, i managed to get him into a hospice the day he died at least with a little dignity in there. We had the peg feed talk and decided like you not to, but twice later we were asked about this and our decision as the hospital staff didn't communicate so Mum phoned me in tears and I had to go and sort it all out again, horrible just horrible. So I feel for you and what you are going through, people say this memory fades and better ones surface, it's been nearly 3 years and I still have flashbacks.
It will be over soon, my dad was like this for 4 weeks and it seemed an eternity. There's not a lot you can do, I like you wanted to run away, not be there, felt sick at each visit then guilty for leaving him there, I know it's bad but you will pull though x

Hanorah Mon 02-Dec-13 13:30:38

Has your mum had steroid tablets ? Sorry if you already discussed this on your other thread, I couldn't find it. Steroids made a huge difference to my mum's appetite, she went from turning away when food appeared on the TV to being able to enjoy a 3-course meal. They do come with some nasty side effects, including weakening the muscles in the legs, and eventually those start to outweigh the benefits. But for a few months she was a new woman.

Needmoresleep Mon 02-Dec-13 22:30:46

Downton, how are you? How is your mother?

DowntonTrout Wed 04-Dec-13 20:46:45

Hi all. Mum is no better. Worse really. She has bouts of sickness, when she cannot keep her medicine down. She is surviving on a couple of Calogen shots a day. Her fluid intake is decreasing, so 350/400ml daily, which is not enough. She will have a couple of bites of toast or 3 or 4 teaspoons of soup, maximum. When she is sick she will not let anything pass her lips for a day or two.

She started with an infection a couple of weeks ago. I recognised immediately that she was delirious and alerted the sister to a possible UTI. It was quite funny really, well if it wasn't so tragic. Her mind must have been going at a million miles an hour, but everything was jumbled up, she was looking inside my cardigan for pockets for fish and chips and telling me about animals jumping through the trees. It was entertaining but I knew something was wrong.

Her GP agreed an put her on antibiotics, which she wouldn't/couldn't take. They managed to get some bloods. The GP had the results today and her platelet count and white blood count are low. They wouldn't discuss it any further as the GP wants to review the results "properly" before he says anymore. That doesn't sound so good to me. The sister says they need to make sure that if the infection is treatable they can work out how to treat it. Or if it is something more sinister that is underlying, like if mums cancer has come back. I was shocked when she brought up cancer. It had never crossed my mind, I've been so focused on everything else.

PacificDogwood Wed 04-Dec-13 21:00:24

Oh, Downtown, that sounds so hard and awful sad.

I came on this thread with some gems of wisdom re the eating issue, but things have obviously progressed.
What I am going to post I am saying as a GP and also as the granddaughter of a 100 year old woman who is severely demented (my gran is like an infant in all her needs), so I hope some of this is helpful in a small way.

It sounds as if your mother is nearing the very end of her life, I am sorry. If a simple UTI is causing her confusion it is certainly worth treating with an antibiotic. If she refuses/cannot take it, she can recover from it or it can get worse and lead to sepsis and death.
It is very worthwhile, whether cancer rears its ugly head again or not to have a long 'end of life' chat with her GP: how much active treatment do you feel is appropriate? Where do you want her to be looked after? Is there a way to inform OOH drs of your mum's condition and your wishes for her care (lots of people don't know that GPs/OOH/hospital IT systems are not automatically dealt) to avoid middle-of-the-night 999 ambulances to A+E which is often inappropriate and very distressing for all concerned? Is there a way to have "just in case" medication at the care home for OOH nurses/drs to give to your mum if she becomes agitated/in pain in the middle of the night or at weekends?

Re the food issue I agree to stop the supplements and keep offering her anything that she likes: ice cream, custard, yoghurt, chocolate, bits of cheese, anything that is calorific and that she likes.

Dementia is a progressive illness of mind AND body - they both declined, sometimes one more rapidly than the other and it sounds like you mother's body has reached the end of what it can cope with.

I am so sorry you have to go through this. It's shit and dementia is a right bastard.
Looking after my gran is very, very hard for my mum and I am of no practical help as they live in another country from me.

Please look after yourself and try and make your decisions based on what is best for your mum, not what makes you feel less uncomfortable (withdrawing feeds is such a counterintuitive thing to do, I know).

I hope none of what I wrote will sound unnecessarily cruel x.

DowntonTrout Wed 04-Dec-13 21:40:27

Thank you so much for posting that.

I will see what the GP has to tell us tomorrow. Obviously malnutrition will have a part to play in the blood results, very little to be done about that now. The sporadic antibiotics may have just been enough to clear up a UTI, maybe not. But if it is something more I can't see any treatment being worthwhile.

I am wondering if the hip fracture is responsible for this rapid deterioration. Well, I know it is with the dementia, but could it also have triggered a recurrence of cancer?

PacificDogwood Wed 04-Dec-13 21:48:31

Oh, when did she break her hip?
And what kind of cancer did she have?

No, I don't think that a fall which leads to a broken bone can 'reawaken' cancer, but it it is possible to break a bone without much force if there is in fact cancerous deposits in the bone IYKWIM.

My gran has severe osteoporosis and has broken more than one rib/vertebrae turning/being turned in bed sad.

CMOTDibbler Wed 04-Dec-13 21:56:44

Really sorry to hear this Downton.

The fracture couldn't trigger a cancer recurrence, and they'd have spotted on the xrays done when she broke her hip if there were bone metastases that weakened the bone there.

DowntonTrout Wed 04-Dec-13 22:08:38

She fractured her hip in July. Her second fracture in 10 months. She was out on a trip to the theatre. Hard to believe that just 4 1/2 months ago she was fit, well, eating properly and cognitively well enough to enjoy outings like that. The first fracture didn't trigger anything like this.

The other day she was asleep and she just looked dead. I actually took a photograph of her. That may sound morbid and wrong but I just felt the need to record her deterioration. how someone can lose 20kg in just 4 months, god it's grim.

Oh. She had breast cancer and a mastectomy but over 5 years ago now. It just seems odd that the sister brought that up, before the blood tests actually. She said she didn't like mums colour, that she looked like there was something wrong.

PacificDogwood Wed 04-Dec-13 22:16:59

I know what you mean about documenting what's going on.

My mum took a photograph of my gran lying in bed on the morning of her 100th birthday this summer - she was lying on her side in a kind of fetal position. She looked like some kind of Egyptian mummy. With a nightie on. Once up and dressed she looked great (she has a full head of bright white hair which is a real feature), but the person she once was is long gone.

I think the cancer theory is maybe a bit of a red herring tbh. A recurrance would not just necessarily show up in a blood test and treatment would be inappropriate anyway.

She may simply be reaching the end of her rope sad.
I am so sorry x.

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