Mum refusing food/drink. What now?

[Downnotout]

I have not posted for quite a while now. Mum was settled in a home and doing ok.

She fell, 5 weeks ago, and fractured her hip. She needed an operation to pin it but the doctor warned us that she might not walk again.

She became delirious in hospital. Whether from the fall, the anaesthetic, or a UTI. She deteriorated very quickly and began refusing food.

Mum was released back to the home just 16 days ago. She has not eaten since and is barely drinking- only a sip when prompted. She is very weak, has lost so much weight her bones are sticking out and even a sip of water gives her dreadful gas, which is painful. Mum is sleeping a lot, but when awake just says she wants to die. She also keeps taking these shuddering great breaths as if she is struggling to breathe.

I can't believe I have had to raise this with the care home. It seems no one was aware how long it has been since she has eaten. I think she has ketosis, there is that awful metallic smell about her. I have asked them to call the doctor, who will come tomorrow, but they say he will ask if we want mum to be taken to hospital. I don't know. What will/can they do? Is this likely the end stages? If so, how is it managed? The home/hospital/hospice? I can't bear to see her in this state, there is no quality of life and she just wants to die.

 

[cab]

Ahhh hun so sorry to hear about your mum

The hospital might be the best place just to get something inside her I do feel for you

sending hugs your way x

 

[stillcaring]

if your mum wants to die then I think you should respect that and not cart her off to hospital where they might force feed her to keep her alive. See if she can be made comfortable where she is until she gets her wish. Stay with her lots so she knows she is loved and cared for as it doesn't sound like it will be for very long.

having said that it is utterly unforgivable of the home to not know when she last ate - but that doesn't mean that it wouldn't cause her a lot of anxiety to be moved now,

 

[Downnotout]

There is a food diary. I read it today. That's how I know.

It seems there have been a number of **** ups by the staff. Mums key worker left suddenly. No one else has been appointed yet. Each staff member entered the diet in the diary with no one checking previous days, each thinking that if she didn't eat that meal she would eat the next.

No one has seen her eat for 16 days. There is record of half a cup of tea or a few sips of juice, but that is all. Today I got an inch of nutrition drink into her. She got terrible gas/ indigestion and then diahorrea. I think she is unable to ingest anything anymore.

 

[min88cat]

Hi Downnotout, that is absolutely appalling and totally unacceptable. I would file a complaint to the home tomorrow. That is pure neglect and they should not be allowed to get away with it. We were notified by the NH within 24 hours of my MIL refusing food and drink, and the GP was called immediately. We requested that she be kept at the home rather than be hospitalised and for her to be kept comfortable and pain free.

I would be raging mad in your situation.

 

[Downnotout]

Thank you. I know it's not right.

I just wonder what happens now.

I don't want her fed by tube or anything. I don't want her to go through anymore discomfort.

The GP apparently did not see her when she was discharged from hospital. He said he had her notes, the hospital said she was eating and drinking so there was no need for him to come out. This is blatantly not true.

 

[FifiMo]

If hospital is mentioned then you are right to consider what that would mean. It is not going to automatically change your mum's point of view about not wanting to eat. They might then investigate whether there is a medical reason for not eating, but bear in mind that this may subject your mum to more poking and prodding and maybe procedures such an endoscope or colonoscopy to rule out things like blockages etc. So, ask yourself if this is what your mum would want to happen for starters. Then if she still isn't eating they may look at alternative means of feeding. There are mainly 2 options. One is using a nasal gastric tube the other is PEG feeding. Both are difficult with dementia sufferers because there needs to be a degree of understanding and cooperation from the patient in order to be successful. For example, how do you get them to refrain from pulling the tubes out or worse pulling the PEG device out. If a PEG device is mentioned, you need to know that involves a surgical procedure to put a tube directly into the stomach, so another general anaesthetic would be needed. Neither option is permanent solution and the PEG has added risks of infection around the point of entry into the stomach ...not easy to manage if the person doesn't understand the need for good hygiene and the nursing staff at the home can't really monitor things 24/7. Lots to consider, none ideal, more likely to fail and yet again you will have to consider what your mum wants, what you want, what the GPs advice may be.

If your mum stays where she is and continues to reject food, you will find that the body starts reacting to lack of nutrition. By this I mean that your mum will start sleeping more and more. The body will start to shut down in order to protect the major organs ... The big gasps for breath may be evidence of this process already having started and you could check with the GP if this is the case. You know your mum better than everybody. What is your view? Do you think your mum has reached the limit of her endurance? Should you continue as you are doing now and offer food and drink regularly but respect her wishes if she refuses? Speak to the GP and ask them for a candid view on whether this might be the kindest way to proceed. You may find that you are surprised and occasionally she might choose to eat or drink and have a slow route back to some level of recovery. Then again, she may continue to refuse. Either way, you can take solace in the fact that you honoured her choices. I say this because it is a difficult situation for you to be in and you will start to question yourself and may encounter the old guilt monster at some point. The last thing you need is to be left with long term traumatic consequences as a result of decisions that are made.

When you need to clear your options/thoughts or just need to talk about what is happening then TP is here to support you through this. There are many of us on here who have been though this and understand what you are going through.

Fiona

 

[Downnotout]

That is just what I wanted someone to explain, thank you.

I feel that she, and I, would like no further interventions. Certainly not the feeding tube or PEG. I think that would be more like torture.

I will discuss this with the GP and the home tomorrow. I hope for some peace, relief and comfort for her. That is all I ask.