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Elderly parents

When someone stops eating

44 replies

DowntonTrout · 25/10/2013 12:51

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.

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Report

DowntonTrout · 04/12/2013 22:18

Ok, thanks CMOT that makes sense. Of course they would have seen it on the X-rays! They operated and pinned her and obviously they took lots of bloods when she was in hospital ( 6 weeks in the end) so anything like that would have been present then and they would have spotted it.

Well that's good. Unlikely to be cancer. Whatever this underlying infection is, it could still finish her off, but the thought of cancer just felt so scary. Does that make sense?

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DowntonTrout · 09/12/2013 20:46

So. The blood tests didn't show anything specific, other than low levels, which they think is down to malnutrition.

The GP has visited today and wants to refer mum back to the dementia consultant at the hospital and the dietician. FFS we are really beyond a dietician. I suspect the dementia doctor will want to re- admit mum.

I don't want this to happen. It will be distressing and disorientating for mum and was when all this not eating started. After 5 weeks last time she was admitted they were no nearer getting her eating again, and discharged her both times whilst she was not eating. So what s the point?

The sister says I need to go to the appointment with mum and discuss that we would prefer mum to stay in the nursing home and be made comfortable. That's it then isn't it? Time to make the decision to stop. I am suddenly scared thati am giving up on her

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PacificDogwood · 09/12/2013 20:54

What is admission or going back to a clinic to achieve? Genuine question.
What question does the GP want to have answered by sending her for another opinion? What would an admission achieve? Would it be to try and find a reason for her not eating?

You have signed a DNR form - were other issues discussed as to what other treatment you wish/don't wish for your mother? Antibiotics for a chest infection? Tube feeding? Admission to hospital in case of another fall/broken bone?

Had end of life care been discussed with you?

No, you don't need to go to any appointment, nor does your mother.

The 'decision to stop' is the hardest any person can make for another and I am sorry you are finding yourself in the position of having to consider it.

Take your time.
You have POA (financial and welfare) I hope?
ALL decisions are up to you, in just the same way as if you were making decisions for yourself.

Do you have any siblings you can speak to about this? Is your own dr the same as your mother's? If you like and trust your GP it may be worthwhile batting options around with them whether or not they are also your mother's dr.

Sorry, lots of questions.
It is so very hard

DowntonTrout · 09/12/2013 21:25

Ok. Firstly, I don't have POA. Mums partner, who died, arranged it jointly with his son. It was meant to protect him, but he died suddenly and it is too late to do anything about it. Whilst difficult initially we have been able to forge a decent rapport, although I have never met him. He doesn't get involved and just writes the cheques. He is happy to back any decision I make.

I am guessing the GP has no further ideas. Hence referring back to the consultant. To be frank, I know the consultant has her job to do but she was unable to affect any change in mum previously, other than sorting out the delirium. Basically from UTI and dehydration. Even in hospital mum would only take meds sporadically, as now, I can't see the point in another extended stay when the most they can do is rehydrate and get mum to eat three teaspoons of porridge a day instead of two, or one or non. They can't make her better can they? There is no recovery possible, only prolonging of the inevitable.

The DNR is in place. The GP wouldn't discuss other treatment etc as "we weren't at that stage yet." well we are now, it seems. So what will happen if we say no more? Will they stop offering food? Drink? Meds? Will they provide the nursing home with stuff like morphine to ease mums path? Is that what they mean by making comfortable?

Lastly, I have picked up all along that the professionals were not wanting to discuss a proper end of life plan. Perhaps they felt it wasn't time but they made me feel as if I was pushing her on her way too soon, like I was odd to suggest she was dying. Am I being over sensitive or is it just their job to prolong life until they can do no more even though the patient is suffering?

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PacificDogwood · 09/12/2013 21:31

How have you been able to sign the DNR if you don't have POA?
That's a real issue.
You may need to consider applying for Guardianship ASAP.
If you have a solicitor it would be my advice to spend some money for legal advice on the issue.

Ok.
You need to have a v frank talk with her dr.
Yes, it is hard for drs to concede defeat and stop trying to 'make things better'. They may feel that this is what you want?

What age is your mother?
How long has she had dementia for?

Palliative care is all about making somebody quality of life as good as possible when there is no hope for a cure. It can be very helpful for all sorts of conditions, not just cancer.

Btw, I am not surprised that your mum's blood tests were unhelpful.

DowntonTrout · 09/12/2013 21:51

I Don't know. My DSIS and I went to see her GP to discuss the DNR and we explained about the POA and he was willing to accept us as next of kin. I did the same for my dad but thinking about it, he didnt have dementia and was able to give his consent. As I said, the Attorney is in agreement but I can seek legal advice if needs be. I will give him a ring.

Mum is 85. she was diagnosed around 6 years ago just after her mastectomy and treatment for breast cancer.

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PacificDogwood · 09/12/2013 22:01

Oh, good you have a sister - I am glad you don't have to carry this burden alone.
Next of Kin is not necessarily equal to POA - I am sure all is fine unless there is any kind of bone of contention when then all hell can break loose. I am speaking from (professional, thankfully not personal) experience. So, if in doubt, seek your own legal advice, even if you then chose not to change anything, at least you know what your and your DSis' options are.

Ok, an older lady with dementia is unlikely to be offered any kind of treatment for a recurrence of her cancer, should she have a recurrence, unless it were for palliative treatment, say a one off dose of radiotherapy to help with bone pain from metastases.
So, unless your mum is in pain or otherwise unwell, seeking a diagnosis is unlikely to change her management.

Hence my question, what is to be achieved by admitting her?

IMNHO, trying to do what is best for her without taking in to account how distressing you find it all, is a brave and difficult thing to do and is not 'giving up on her'.

An experienced GP or geriatrician should be able to guide you through options and to help you find a plan forward.
Would a geriatrician or Old Age Psychiatrist not do a domicillary visit at the home to see your mum?

DowntonTrout · 09/12/2013 22:18

Well that makes sense. I think the GP has decided that there is nothing wrong with mum, (no cancer) other than her late stage dementia and as such is passing it off to the hospital specialist to see if they feel there is something they can do.

I don't want her to go to hospital as it is likely to bring on more confusion and as they told me when they discharged her, it is not a good place for her to be.

I know that the day she dies I will feel that I would do anything for a bit more time. And yet, it's not about me. It's about watching her suffer and starve to death, miserable, while strangers prod and poke. No dignity or quality of life. It is not fair on her to let them continue.

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PacificDogwood · 09/12/2013 22:20

Please remember that dementia is an illness of mind and body - the physical deterioration is as inevitable as the mental one.
'Tis utter shit.
I am sorry.

DowntonTrout · 09/12/2013 22:26

Thank you

It helps to talk about it.

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pudcat · 10/12/2013 08:25

I don't have POA but when Mum was ok she signed a DNR form. Mum has no funds except pension so we didn't think we needed POA. Mum is on palliative care as we don't want her in hospital. She gets worse in there, and it achieves nothing. They cannot operate on her cancer etc. They cannot perform a miracle and make her walk. So what is the point? We want her to end her days in this lovely NH. I just wish she would now pass away peacefully in her sleep and with dignity. I could cry for you Downton.

DowntonTrout · 10/12/2013 08:53

Oh I'm sorry pudcat I didn't realise your mum had cancer and here's me rambling on about it.

How long can they go on for? You know, when my dad was dying, I had him here with me until the last day, heart failure, I used to sit downstairs in the kitchen, listening out for him moving about, and hoping that he might not, that he would have died in his sleep. Of course, now he's gone, I am sad that I wished that time away but at the time, seeing him suffer and fading away in front of me, I couldn't bear it for him.

One night we mistakenly double dosed on the morphine, then next morning he didn't wake up until 11. I did not dare go and check on him, in case I had killed him! We laughed about it afterwards. It was the first good nights sleep he had had in months. He loved the morphine, I can see how it is addictive. It wrapped him in its warm cosy glow and made everything bearable. God rest his soul. That is what I hope for for mum. To stop the struggle and have some comfort and peace at the end.

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pudcat · 10/12/2013 11:09

No need to be sorry Downton. This is where we can talk about things that upset us, rile us etc. Mum's NH found a lump 3 years ago and as she had heart problems they just controlled it with meds. It has now erupted and as the district nurse could/would not go into NH every day after her last spell in hospital, we had to find a NH. She also has a natural gall bladder fistular with stoma bags on it as they couldn't operate on that and it erupted. So totally immobile, doubly incontinent, blind in 1 eye, impaired hearing and vascular dementia caused by all the UTIs and the numerous times she has caught CDiff each time she goes into hospital. Plus not eating properly - she has to be fed. Please can someone tell how this is fair. The NH is brilliant thank goodness, but I do pray for it all to end. She was widowed in 1953 and I ask every day for my Dad to fetch her. Sorry for all this ramble.

DowntonTrout · 10/12/2013 11:20

That's so sad. I'm sorry.

Mum covers her mouth when we approach with food. She is capable of feeding herself but won't. She doesn't seem able to process food anymore so even if we can tempt her to have a couple of mouthfuls her body rejects it. Which is why I wonder why they even try anymore.

She is now starting to refuse the high calories Calogen shots, which are like 40ml of milkshake. They were what was keeping her alive.

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Moreisnnogedag · 10/12/2013 11:40

Downton I hope you don't mind me commenting on a long running thread. I work with patients who have broken their hips and so am involved in some of those patients end of life care.

You are doing the right thing. I am sorry that your GP isn't being more helpful - it is their role as a family doctor to help recognise when someone is near the end and to plan accordingly. Your dm is indicating that she has had enough and I think trying to get her on a good end of life plan is important.

Personally I'd go to the geriatrician and speak to them about this and see if you can get palliative care involved as your GP seems reluctant. An ELP not only gives the nursing home the ability to manage her symptoms but also stops them calling out an ambulance in the dead of night if she takes a turn for the worse.

Does your relative have medical or financial power of attorney (or both)? If so, then he does need to become more involved or give you a document saying that he is in agreement with your plan of action. Because essentially it he has medical power of attorney, they should be running decisions past him almost as if he was your mum IYSWIM.

This is a really hard time for you and please make sure that you look after yourself. Dementia is a very cruel process and should be (in my mind) treated the same way as if a patient had heart problems or diabetes or even cancer.

happygirl87 · 10/12/2013 11:56

So sorry Downton. Similar happened with my GM, she was in and out of hosp for a year, being put on a drip to get her back to a livable wieght and then sent back to the nursing home where she lost it all again. When she was low weight she would have fits due to mineral deficiencies, where she would go rigid and bright red and shake The last time in hosp she had a DNR and wanted Liverpool Care Pathway- we were told "not at that stage" but then after a big fit she lost all ability to communicate and they agreed.

As soon as the poking/prodding, attampets to feed etc stopped she was brighter, and I hope her last day was happy,with DD& DGCs. She had very little hearing and refused to communicate towards the end, but the about 12 hours before she died I held up the whiteboard we had been using to speak to her with a message saying "you are beautiful" and she shook her head and pointed at me: "no you are" . LCP was definitely best thing for her quality of life and dignity and the end

and hugs to you at this horrible time

DowntonTrout · 10/12/2013 12:09

I will speak to the person who holds POA. He is not related by blood or marriage to any of us, as I said, I have never met him. I'm sure he will send a signed letter to state he is in agreement. He has no desire to be involved and it wasn't meant to be like this but unfortunately it's what it is now. Time overtook us and as mum was no longer capable of making decisions I was too late to overturn thevPOA and would not have been granted it. We did not know about it until it was too late and it had to be made full very quickly, otherwise we would have had no access to mums money and no way of paying for mums urgent care. It was a mess at the time, but it's worked out ok.

Now she has full CC funding.

I have found the professionals very difficult to work with from the start. It's like getting blood from a stone. No one volunteers information and I can only thank god for the Internet because I have had to search, beg and be very tenacious to get information, to get the right care, to get SS involved and even have had to check and recheck mums medical notes as so much of the information on them was wrong (for example notes about the hip replacement which she never had and the hip fracture was written up as the wrong leg- so they were treating the wrong leg! Jesus!)

I asked once what would happen to someone who had no one to speak for them as I found the idea terrifying. They said that an advocate would be appointed. Well I'm pretty sure an advocate would not have gone to the lengths I had to.

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DowntonTrout · 10/12/2013 12:11

Thank you happygirl I fully intend that mum will not go back to hospital.

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PacificDogwood · 10/12/2013 12:20

I am sorry you have not had more support from the professionals you've dealt with.
Your mum's kind of situation is bread and butter work for many GPs, but some will be more experienced in dementia end of life care than others.

I would suggest contacting your mother's surgery and setting up a formal meeting with her dr - maybe a double appointment in her name that you attend. Or you and your sister?
Assuming you and your sister are in agreement, make it quite clear that you do not wish further hospitalisation and have it documented in her records.
Find out if there is a way to let OOH/NHS24 know about that decision too - remember they have no access to your mother's records after hours.
Discuss end of life care and LCP (I have not mentioned it because of the horrible press its been getting - believe you me, it is a great tool to help a person near the end of their life to have a peaceful end). People can be put on the LCP and taken off again if appropriate.

If your mum is putting her hand over her mouth when she is offered anything to eat, then she is making her intentions quite clear, isn't she? I'd be guided by that tbh.

Wrt POA, yes, get a letter from the person holding POA stating that he is happy to have you make decisions. But still investigate getting a guardianship. And here's another point: who's the executor of your mother's will?

and to you and pudcat.

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