Mums stopped eating

[Cappy67]

My mum has been diagnosed with vascular dementia for 12 years and is now in a care home. The last2 weeks she’s stopped eating and refusing meds. I think she takes a bit of water.
Question is do you think we are now nearing the end?
Up until a month ago she was her usual confused self.

 

[canary]

When people with dementia are at end of life, one of the signs is that they stop eating and drinking, but they are not the only signs and sometimes they stop eating for other reasons.

Have you talked to the GP about this? Have they checked for oral thrush, mouth ulcers etc?

If the GP thinks that she is indeed at end of life, they will prescribe the EOL meds - to be given by patch, injection, or syringe driver, although they may not give them straight away if she is not in discomfort or seems agitated.
Sometimes (more often than you would think) people who seem to be at EOL suddenly rally and start eating again. This stage is a real roller coaster
xx

 

[StephanT]

You have to be very careful here Cappy67, because depending where your mother is -that is , which country - practices around palliative care are very , very different from each other.

In my case, when my mother had the slightest difficulty eating, they wanted to place a tube. Thankfully the law in Spain allowed me to fight it given that my mother was a nurse and made it crystal clear that a pec tube was out of the question.

However, you should also know that unlike popular depictions and sometimes even referenced in these forums, people can and do survive for months on 3 spoons of yogurt and a few sips of water a day. My mother, for example, so i speak from experience.

As i mentioned in another post, this topic is VERY sensitive to a lot of people, and there are a LOT of factors to take into account. The first and main one being, no one can tell you 'when'. In my mother case, she has 5 years to live 7 years ago, then 3 months 5 years ago, then it became 'imminent' or 'three months' every other months since then. I lost track of movement (and accumulating bills) between the care home and the hospital.

I'm not sure what you can do yourself not being aware of your location and circumstances but my advice to anyone here who is just at the begging of this journey is to make absolute sure, and i mean at all costs, that the country your loved one is in a country where palliative care is actually 'a thing'. If that sound odd, note that palliative care didn't exist in spain until 2013, so they had only 10 years to implement some basic stuff - a far cry from other countries where palliative care facilities exists.

I also read a lot about "EOL meds",[[ WHICH (EDITED) are not what i thought they were, so this is removed out of concern for appropriateness]]


And also, evidently I want to wish the very best outcome for you and your mother, as i can assure you , i know exactly how this feels, and i realize how horrible it is.

 

[canary]

I also read a lot about "EOL meds", which i strongly suspect is a polite reference to giving anxiolitics , antiemetics and pain killers to someone who is calm, not nauseous, and not technically in pain.

Most people on this site are in UK and the references to EOL meds are almost certainly by UK residents - I have made reference to them myself. You are right in what these meds are, but they are not given to people who are calm, not nauseous and not in pain. They are usually prescribed when the person is actively dying and kept in readiness for when they are needed. I was with mum 24/7 for the last week of her life and the meds were used in her final days as they were clearly needed so her passing was painfree and peaceful.

I dont know what happens in other countries, though

 

[StephanT]

Most people on this site are in UK and the references to EOL meds are almost certainly by UK residents - I have made reference to them myself. You are right in what these meds are, but they are not given to people who are calm, not nauseous and not in pain. They are usually prescribed when the person is actively dying and kept in readiness for when they are needed. I was with mum 24/7 for the last week of her life and the meds were used in her final days as they were clearly needed so her passing was painfree and peaceful.

I dont know what happens in other countries, though

Thank you, i see now that I misunderstood, I apologize and edited both posts were I referenced this. In any case, yes indeed, things are very different between countries!

In fact, this has led me to making some , with hindsight, pretty bad decisions long term. The biggest takeaway I have for people is to be very careful which country your loved one is located. There's a big, big trend in Europe to move people to spain, as it appears like a 'much kinder' option than local care homes, which have (for good or bad reasons) a very, very bad reputation.

Spain, on paper, sounds good - and look,it was good for my mum, at the beginning, when the aphasia is still fluent-ish. She could enjoy the weather and certainly the location was more cheerful than my native, drab Normandy. There are two major risks however, which I hadn't factored in:

a) palliative care was not recognized as 'a thing' until 2013 in spain. So imagine a situation where hospitals dont' want your loved one and openly complain about him or her 'using a bed' because they aren't care homes, and care homes that don't want your loved ones because 'they aren't hospitals'. Sadly, both will then engage in petty arguments about who is right and who is giving the 'right' diagnosis.

b) linked to (a), if that sounds bad, and in addition it's costing you a lot more than initially expected, stretching your finances, it's really, really important to remember there's 'no way back'. People don't put alzheimers sufferers in a semi-vegative state in cars or ambulances or airplanes for that matter. No one does. It does not exist. You cannot purchase it even if you have all the money in the world, because the issue is one of legal liability.In addition, it's cruel to move someone who has this disease.

So if one advice comes out of this thread, it's to be very careful in selecting a good carehome from the very beginning in the correct location, which will vary based on your financial needs, the stage of the illness, your capacity to relocate in case of extensive illnesses (in addition to dementia), and so on.

I hope this helps someone somewhere.

 

[marionq]

My mum has been diagnosed with vascular dementia for 12 years and is now in a care home. The last2 weeks she’s stopped eating and refusing meds. I think she takes a bit of water.
Question is do you think we are now nearing the end?
Up until a month ago she was her usual confused self.

I haven’t posted since my husband died four years ago but this topic is so important that I wanted to comment. With no experience of EOL care I trusted the care home to know what to do. He had just been released from hospital after breaking his hip and was admitted to a new nursing home which unknown to me did not understand EOL. Over a period of two days my daughters and I were with him as he struggled and although a doctor was called he did not leave the necessary drugs to deal with the situation when things deteriorated the following morning. I would strongly advise anyone who is likely to have a loved one in this situation to familiarise themselves with all that will be necessary so you can keep nursing staff right .

 

[Catshak]

When people with dementia are at end of life, one of the signs is that they stop eating and drinking, but they are not the only signs and sometimes they stop eating for other reasons.

Have you talked to the GP about this? Have they checked for oral thrush, mouth ulcers etc?

If the GP thinks that she is indeed at end of life, they will prescribe the EOL meds - to be given by patch, injection, or syringe driver, although they may not give them straight away if she is not in discomfort or seems agitated.
Sometimes (more often than you would think) people who seem to be at EOL suddenly rally and start eating again. This stage is a real roller coaster
xx

My mum did this. GP and district nurses put everything in place for wool care and after a week she suddenly rallied and has been ok since (that was in April). She sleeps most of the time but will usually get up for about 5/6 hours in the day.

 

[AmIgullible?]

When people with dementia are at end of life, one of the signs is that they stop eating and drinking, but they are not the only signs and sometimes they stop eating for other reasons.

Have you talked to the GP about this? Have they checked for oral thrush, mouth ulcers etc?

If the GP thinks that she is indeed at end of life, they will prescribe the EOL meds - to be given by patch, injection, or syringe driver, although they may not give them straight away if she is not in discomfort or seems agitated.
Sometimes (more often than you would think) people who seem to be at EOL suddenly rally and start eating again. This stage is a real roller coaster
xx

Exactly what has happened with my mum. GP ordered EOL two weeks ago and then she rallied

But she’s not eating and refusing meds. I don’t think she can swallow easily.

 

[AmIgullible?]

Exactly what has happened with my mum. GP ordered EOL two weeks ago and then she rallied

But she’s not eating and refusing meds. I don’t think she can swallow easily.
.

Yes, she’s been checked for other things.