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Don't Know What to Do?? Mum Not Able to Eat&Drink - is it End of Life Care Now?

blue4ever

Registered User
Sep 4, 2018
12
0
I think my Mum is at the later stages of this disease.

She's been in a nursing home for the past 2.5 years. At first she constantly wandered around the home.

Unfortunately, Covid got to her in the first wave early last year - her GP rang to say she had a 50/50 chance of pulling through.

She did fight it off, but was left without the strength to walk.

When we go to visit she's in a wheelchair and strapped in with seat belts, which she's constantly trying to take off and stand up.

Over the past couple of months she's been bed bound, while visiting.

Sadly, she was admitted to hospital last Thursday night with a terrible chest infection/cough.

It turns out that she has aspirated some food or drink and it's given her an infection which seems to be getting better with antibiotics and being nil by mouth.

The specialist at the hospital has just phoned my sister asking if she would be a good candidate to be fed by intubation.

The trouble is she won't let anyone go near her nose or throat to just run a covid Schwab to test.

And she is very agitated trying to constantly get out of bed and do tasks that she thinks are undone.

Reason for my post: - is this our choice and if we say no to intubation would Mum be put into end of life care?

Or could we let the chest infection clear and see if the Nursing home staff can get her to feed normally again. The specialist said in his experience this sort of problem will recur regularly.

I just don't know what to say to my 86 year old dad.

Thanks for any advice or help. Thanks again
 

Melles Belles

Registered User
Jul 4, 2017
883
0
South east
@blue4ever, sorry your mum is so unwell. If she is aspirating food and drink has she been seen by the SALT team(speech and language therapy who deal with swallowing problems)? She may to have special thickened drinks and pureed food. Personally I would not want a relative with late stage dementia to be fed by a tube because they would probably be agitated and distressed by the tube. That’s just my opinion though.
 

lemonbalm

Registered User
May 21, 2018
1,757
0
Hello @blue4ever

The same things happened to my own mum, the Covid, deterioration, then the aspirating. She was kept in hospital on oxygen for a few days, no food but was hydrated by a drip. She was not expected to survive but did make it. She has deteriorated further since then.

Personally, I would have not agreed to feeing by tube if it had been suggested. Mum would have found that too distressing. She was already so frail, I don’t think it was considered as an option. It was never mentioned.
 

lemonbalm

Registered User
May 21, 2018
1,757
0
By the way @blue4ever

My mum was discharged back to her care home for end of life care, which she is still receiving 4 months later. She was seen by the SALT team whilst in hospital and has since been given thickened drinks and puréed food when she will accept it. She is close to the end now but I am grateful that she was able to be discharged to the home for end of life care.

It’s a very difficult time for you and your family. I will keep fingers crossed that all goes well for your mum and that she can go back to the nursing home.
 

blue4ever

Registered User
Sep 4, 2018
12
0
@blue4ever, sorry your mum is so unwell. If she is aspirating food and drink has she been seen by the SALT team(speech and language therapy who deal with swallowing problems)? She may to have special thickened drinks and pureed food. Personally I would not want a relative with late stage dementia to be fed by a tube because they would probably be agitated and distressed by the tube. That’s just my opinion though.
Thanks @Melles Belles - Yes it was the SALT specialist that phoned my sister and I think we agree as a family the tube would be too distressing for Mum.

Hopefully, fingers crossed she'll be able to accept thickened drinks. Will keep the thread updated.
Hello @blue4ever

The same things happened to my own mum, the Covid, deterioration, then the aspirating. She was kept in hospital on oxygen for a few days, no food but was hydrated by a drip. She was not expected to survive but did make it. She has deteriorated further since then.

Personally, I would have not agreed to feeing by tube if it had been suggested. Mum would have found that too distressing. She was already so frail, I don’t think it was considered as an option. It was never mentioned.
Thanks for your feedback @lemonbalm - I totally agree the tube feeding would be too distressing. My thoughts are with you for you and your Mum.

Such a terrible time it is.
 

mariedaisy

New member
Oct 26, 2021
1
0
Thanks @Melles Belles - Yes it was the SALT specialist that phoned my sister and I think we agree as a family the tube would be too distressing for Mum.

Hopefully, fingers crossed she'll be able to accept thickened drinks. Will keep the thread updated.

Thanks for your feedback @lemonbalm - I totally agree the tube feeding would be too distressing. My thoughts are with you for you and your Mum.

Such a terrible time it is.
I joined this site after searching for help with my mum, she is 74 years old with dementia and paranoid that food and drink is poison and she is also refusing medication . I’m becoming very concerned and was hoping to find a answer that could give me some light at the end of the tunnel.
 

blue4ever

Registered User
Sep 4, 2018
12
0
Dear @mariedaisy it sounds like your Mum is in a different stage of dementia than my Mum.

I'm no expert at all, can only say what my mum used to be like.

In the early stages she became incredibly fussy about what she ate and only ate extremely small amounts. The weight fell off her.

Is there any help you can seek locally that would be able to help and convince your Mum that her food isn't poisoned?

I hope from the bottom of my heart that you find the help you need soon.
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,214
0
High Peak
Tube feeding in late stage dementia is not only distressing, it can prolong life where there is no quality of life left.

My neighbour's father was late stage and bed bound. He was put on a PEG feed after a bout of pneumonia. He lived another 6 years, bedbound, without speaking or having any awareness.

We're pretty good at keeping people alive these days. Sometimes, we need to ask whether we should.

(Apologies for any offence - I realise my opinions are not shared by all.)
 

blue4ever

Registered User
Sep 4, 2018
12
0
@Jaded'n'faded - I absolutely agree.

Mum passed away peacefully on 16th September. She would never have tolerated it, kept pulling it out I'm sure as she was so active.

Also, I know for a fact that she would never ever have wanted to be in a state where her body was alive, while her brain wasn't. Again - I mean no offense here.

One of my biggest worries is that I might develop dementia and knowing how it develops over time I might end up in the same situation.

Does anyone know of a way to make sure this doesn't happen, or so that my wishes are known in the future?
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,214
0
High Peak
@Jaded'n'faded - I absolutely agree.

Mum passed away peacefully on 16th September. She would never have tolerated it, kept pulling it out I'm sure as she was so active.

Also, I know for a fact that she would never ever have wanted to be in a state where her body was alive, while her brain wasn't. Again - I mean no offense here.

One of my biggest worries is that I might develop dementia and knowing how it develops over time I might end up in the same situation.

Does anyone know of a way to make sure this doesn't happen, or so that my wishes are known in the future?
Well, it's tricky! It's definitely worth making an Advance Directive - you can specify what care/meds, you would or wouldn't want, specify no tube feeding, etc. What you can't do is say, 'I I ever lose capacity/reach stage 6 dementia (or whatever) I want you to put me out of my misery.'

It's possible to do this in other countries but not here. If it was legal I would certainly do it as I have the same fears. My mother and grandmother had dementia. My father and possibly his parents too, so I'm not hopeful! I reckon I've got about 15 years before it starts. My brother and I even 'joke' about it - 'Have you got dementia yet?' etc. Won't be so funny if/when one of us does get it - fear makes you joke about things :(