End Stage Dementia and Fortisip

[clareb1611]

Hi Everyone and a Happy New Year. My father is at the end stages of Dementia, being totally reliant on his carers at his Care Home, to do everything for him. There have been several times when we've thought he might leave us, but he has always come bouncing back. The difference now is that he has deteriorated physically, rather than just mentally.

He has lost over 3 stone in weight since moving to the home, that's not from their want of trying, if anything they have, in our opinion, been a little over zealous with trying to feed him up. My father is 89, nearly 90 and we know exactly what he would have wanted and what is really important to him, having had a wonderully close relationship with him.

We had a conversation with the GP, several months ago about the use of Fortisip, because Dad just stopped eating. The GP who looks after the residents there, asked if we could let him know as a family what Dad would have wanted and we all (there are 8 children) came back with the same response. Dad would not want to be kept alive in this way. Dad seemed to improve with eating and we presumed that food was all he was having.
Over the last few weeks Dad has deteriorated significantly and spends much of his time asleep. His eating is pretty hit and miss. It's come to our attention that there have been a few cups with fortisip left in his room. Half empty. He has not been prescribed Fortisip and having given Dad cups of tea, at times when he doesn't want/or simply won't take it, the only way they can be getting this into him is by "pouring" it in.

There is no recovery for Dad, he has no quality of life, if left alone he could not do anything for himself. So my question is why are they trying to revive him in this way physically, when he is in this condition?

I'd really like to know others opinions on this, what the consensus of opinion is with regard to build up drinks etc, in people at end stage Dementia, Thanks.

 

[fizzie]

This is awful for all of you.
I would suggest that having made the decision with the GP and the whole family that you need to speak to the Care Home Manager and make sure that it is all recorded - if you can do that at the time when the GP is there too then that would be best. Often at this stage clarity is essential because all the professionals worry about come back.

You might want to get the local hospice involved - most of the hospices are very good and will at the very least give advice and they often work with care homes at the palliative care stage of someone's life. I would suggest if you can that you pop along to the local hospice and ask to see the senior nurse/matron or one of the medics and have a word with them and see what they suggest. It is very comforting to have the experts involved at such a difficult time.

I went through similar with a close friend although not at a care home and the only way we resolved it was by recording everything so that everyone was clear.

thinking of you

 

[clareb1611]

This is awful for all of you.
I would suggest that having made the decision with the GP and the whole family that you need to speak to the Care Home Manager and make sure that it is all recorded - if you can do that at the time when the GP is there too then that would be best. Often at this stage clarity is essential because all the professionals worry about come back.

You might want to get the local hospice involved - most of the hospices are very good and will at the very least give advice and they often work with care homes at the palliative care stage of someone's life. I would suggest if you can that you pop along to the local hospice and ask to see the senior nurse/matron or one of the medics and have a word with them and see what they suggest. It is very comforting to have the experts involved at such a difficult time.

I went through similar with a close friend although not at a care home and the only way we resolved it was by recording everything so that everyone was clear.

thinking of you

Thank you for your response. Before reading your messgae I happened to see the Manager and following a chat with her, she has asked the staff to one stop giving fortisips, until my sister and I have had a chance to speak with the GP and also that Dad should be nursed in bed at present.
One thing I didn't mention was that no matter what, come rain or shine, the staff who I believe on the whole do a good job, get Dad up, washed and dressed even though he then simply sits in a chair asleep, slumped over and looking very uncomfortable.

I think one area where some of these homes fall down is their seeming individual approach to care, actually ends up being a blanket type of approach where everyone receives the same care ie, washed and dressed regardless. So if Dad's allowed to stay in bed after being washed I believe he'll actually be looked after better, because when someone is in bed the level of attention increases just by virtue of the fact they are seemingly unwell.

I'll certainly keep the hospice idea in mind as it's not something I thought of to be honest, but makes sense. We may well need them in the coming days and weeks as we proceed along Dad's final journey.

Thank you so mych for your kind words and advice.

 

[fizzie]

I do think that is silly of them and as you know your Dad best they really should be listening to you unless it is a medical issue. Sometimes they do it because families complain that their loved ones are being left in bed and then it becomes an issue with the CQC however if families say to them that they would like their relative to be allowed to stay in bed then that frees them to note it down and do so. So speak to the care home manager and say that is what the family would like and you know your Dad would be more comfortable.

To be honest as the journey continues he might find it painful to be moved (and then you might want to suggest that they keep personal care to a minimum- one of the reasons hospice staff are so good is that they know when this happens and they understand the words 'minimum intervention'.

I would ask though that they monitor hourly - they only need to pop their heads round and have a few words with him and moisten his lips - just basic stuff - but I'm assuming he can't use the call bell and so you need to write monitoring into the care plan.

Thinking of you and your Dad at this difficult time, do keep posting and well done for sorting out the Manager, one day at a time, keep plodding. You are right about one size fits all !