Preparing ourselves

[bex94]

My grandad was diagnosed with Alzheimer's and vascular dementia around 4 and a half years ago. My grandmother has been his carer since. Up until Christmas time my grandad was fairly mobile, was able to feed himself,go to the toilet alone and you could have some sort of conversation with him. Around a month ago he seemed to have downhill massively, he became very aggressive towards my gran, hitting her, grabbing her and pushing her. He was wetting himself regularly and wouldn't eat or drink anything. My gran had no help at all, she didn't have carers or any support.
It all got too much for her when he hadn't eaten or even attempted to drink anything for around 4 days and he was admitted to hospital. They decided to make him nil by mouth.
We have been told that he only has 3 months left. So we are all preparing ourselves.
How long have other people had with their loved ones when they are at this stage?

 

[stanleypj]

Welcome to TP bex94. I have no particular experience to offer. I hope others will be along.

But I'm surprised at the 3 months left in view of the 'nil by mouth'. It is well-known that Vas D can cause steep declines but this sound very dramatic.

 

[nitram]

Like stanleypj I'm a bit confused about the nil by mouth and three month prognosis.

If the nil by mouth is because of swallowing problems they could well be intending to move to 'feed at risk' or PEG although PEG can be difficult with a PWD.

Are there any co-morbidities that may be involved in the prognosis?

With the 3 month prognosis if he has not already been awarded CHC I would push for a fast track CHC application.

The individual fulfils the following criterion:
He or she has a rapidly deteriorating condition and the condition may be entering a terminal phase. For the purposes of Fast Track eligibility this constitutes a primary health need. No other test is required.

https://www.gov.uk/government/uploa...143/NHS-CHC-Fast-Track-Pathway-tool-FINAL.doc

 

[bex94]

They are thinking about feed at risk but it's not been confirmed yet.
They did assess him in the week and said that he is completely unable to feed himself and they think that PEG would not be suitable for his condition.

 

[nitram]

Feed at risk is probably the way to go but it is up to the various clinicians to advise you on the risk.

This risk is composed of two main factors, the likelihood of aspiration, and the skill and understanding of the person doing the feeding.

 

[BONDJDY]

My grandad was diagnosed with Alzheimer's and vascular dementia around 4 and a half years ago. My grandmother has been his carer since. Up until Christmas time my grandad was fairly mobile, was able to feed himself,go to the toilet alone and you could have some sort of conversation with him. Around a month ago he seemed to have downhill massively, he became very aggressive towards my gran, hitting her, grabbing her and pushing her. He was wetting himself regularly and wouldn't eat or drink anything. My gran had no help at all, she didn't have carers or any support.
It all got too much for her when he hadn't eaten or even attempted to drink anything for around 4 days and he was admitted to hospital. They decided to make him nil by mouth.
We have been told that he only has 3 months left. So we are all preparing ourselves.
How long have other people had with their loved ones when they are at this stage?

Hello my heart goes out to you ,my Mum went downhill very quickly with vascular dementia and a fractured leg which could not be operated on due to her condition I don,t know how they can say 3 months without food ,I stayed with mu Mum the last 3 weeks of her life 2 of those weeks she was having thickened fluids but then she got worse taking nothing at all ,and lasted a week my Mum was in a NH so I stayed there with her so so hard is he on IV fluids I feel for you all such a hard time xx

 

[jjude]

Hi my dad was admitted to hospital just before Xmas due to not drinking or eating and being very difficult to rouse. Prior to this he was losing weight and mobility and continence rapidly. He was in hospital for six weeks and they wouldn't give any predictions. They wanted him discharged as he was bed blocking even though we had to feed him and give him all his drinks etc. The morning of discharge the consultant asked me what my expectation was and when I asked him what he meant he told me he on,y had a few weeks left. He died less than three weeks later. I knew in my heart before the consultant told me but stopped trying to second guess how long and stopped continuously looking for imminent signs and just focused on loving him. Once I stopped looking I felt more peaceful and tried my best to help him have a peaceful pain free ending by reassuring him constantly that he had done a great job and we were all proud of him and loved hi etc etc. I honestly believe he understood every word I said as he continuously squeezed my hand during our chats. He died peacefully in early March. I wish you well x